Aspitude!

Pretending to be normal: A photo story of Asperger's Syndrome

2011-12-19T13:44:00.000-08:00

Hey folks! I thought you might want to read a piece I wrote for Street Roots (see below), a publication that creates income opportunities for people experiencing homelessness and poverty by producing a newspaper and other media that are catalysts for individual and social change.

Leah Nash, an award-winning documentary, editorial, and portrait photographer followed me around for a year taking photos and documenting certain events in my life. To go directly to the video and narrative, click here.

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If you exhaust yourself to hide your challenges, you are often penalized for not showing evidence of your struggles. And if you possess no ability to hide from your challenges, you are often pitied or shamed. Damned if you do and damned if you don’t.

When someone says to me, “You don’t seem deaf or autistic,” my response is, “You might want to expand your perception of individuals who are deaf and autistic.”

Disabled people are as unique and varied as the rest of our world’s population. And it is everyone’s duty to stop limiting us by enabling and promoting archaic typecasts. Disabled people vary in personality just as much as non-disabled people. In a nutshell, there is no one way for a disabled person to be. And what all people have in common, regardless of whether or not disability is present, is the need for support and understanding. Every person on this planet will experience challenges in one form or another.

It is human nature to approach situations and to make assumptions and judgments based only on our previous experiences. Our brains are hard wired to explore and interpret the world in this way. But it is our collective responsibility to understand and address the limitations we unconsciously bring into our interactions with others—and especially so with others who are different. When any given person leaves the confines of his or her home, they will often interact with people who are not at all what their minds might perceive.

Some disabilities are invisible and are not immediately apparent. In the case of autism, it is a spectrum. While some people on the autism spectrum have noticeable profound support needs, others have light support needs. And yet there are also autistic individuals who seem like they don’t need much but actually, behind the scenes (e.g. in their homes, at work, and elsewhere), they might be getting a lot of support — it just isn’t observed in a context where it shows. Note that it’s important where you catch an autistic person in life. One month or year, or whatever have you, a person on the spectrum who previously had light support needs might all of a sudden require more support to meet the demands of life. This can be brought on by changes such as relocating or starting a new job, etc. Once a “script” is in place to address that change and all the dust settles, then that person’s needs might return to accustomed levels.

One of the most important things to understand about autism is that autistic individuals have uneven skills. For example, a person on the spectrum might be a genius at math, yet have difficulty preparing a simple sandwich. In my case, my math skills are light years behind my skills as an artist. I have the same issue with language, as my spoken expression (especially if I am expected to address an unanticipated question) is not in the same league as my written expression. This is the case for a notable percentage of autistic individuals.

In addition to being autistic, I have a profound hearing loss. I was born with a mild progressive hearing loss and lost a significant amount of hearing after a severe case of chicken pox in my teens. Becoming deaf is not something I mourn. It has actually been a blessing in disguise as I am very sensitive to and often bothered by noise. Via my cochlear implant and hearing aid, I can choose when I do and do not want to hear. I am also fluent in American Sign Language (ASL). A person might say to me, “But you speak and hear just fine.” In quiet settings, I can comprehend a lot of spoken language in close proximity, but as soon as too much background noise interferes, I am no longer aided by my cochlear implant or hearing aid. I am deaf and always will be deaf regardless of any future advances in technology. And that is okay.

Perhaps you might be wondering why I have used identity-first language more than person-first language (e.g. autistic verses person with autism). The idea behind person-first language is to support recognition that someone is a person first and that the disability is secondary. I support this approach for those who have made a personal choice to use it. In my case, I feel that deafness and autism are too much a part of me to warrant secondary status. Of course I am a human being first. But there is no part of me that is lost and needs to be mourned or recovered. I am who I am: a deaf autistic individual who is passionate about art, disability rights, and self-advocacy. And I will let nothing stop me as I explore, learn, and grow. When disabled individuals are truly included, the concept of disability and its supposed limits change.

Lots of mothers have warned their children not to judge books by their covers. I know, that same old tired cliché. But it’s true. Not all disabled people are in a constant state of grief and pity. Matter of fact, fear mongering and shame are the very things that serve to hold disabled people back from what we truly need: acceptance, accommodation, accessibility, and integration in the here and now. We are just as shaped by community, education, opportunity, parenting style, and overall approach to our support needs as is the case with any other member of society.

Don't DIS my ABILITY Campaign: Meet Audrey!

2011-12-02T10:58:00.001-08:00

Heard of International Day of People with a Disability in New South Wales? If not, click here to check out the Don’t DIS my ABILITY campaign. Up to 100 events are held throughout November and December each year to celebrate the diversity and ability of people with disabilities.

Let's applaud full inclusion of people with disabilities joining the worldwide conversation about us! Nothing About Us Without Us!

World Autism Interviews: Anemone Cerridwen/Montreal, Canada

2011-11-15T19:05:00.001-08:00

Anemone Cerridwen is a mixture of scientist andmystic who is most comfortable around people in the performing arts -unconventional people who DO things. She's from Ottawa, Canada, and has livedin Edmonton, Calgary, Pembroke Ont, Vancouver, and now in Montreal (but wouldlike to move again soon - preferably to Europe). She's always changing anddoing new things, torn between having a home and travelling, being in thecentre of things in large cities and immersing herself in nature far away fromeveryone. She's been on her own for a long time - having outgrown theenvironment she grew up in a long time ago but not having found a new niche, yet.Her life is about probably mostly about exploration, inner and outer, ratherthan conventional social roles.

Elesia: I enjoy supporting authors on the spectrum. Please tell us about yourproject, Why it Takes Ten Extra Years toGrow Up: The Evolution of Adulthood from Prehistory to the Age of Complexity.

Anemone:I wrote this book originally as an introduction to a book I was going to writeon what religion would be like in a world where people are defined byauthenticity rather than by imposed rules from outside, and I was usingClifford Anderson's The Stages of Life as a starting point. My introduction gotaway from me, but I'm glad it did, because writing it was such a hugeaccomplishment. It took me 3.5 years full time - it was like writing a PhD, butwithout the course work or recognition.

The book looks at how the logic we use to understand the world affects not onlyhow we do science, but also how we perceive ourselves and other people. So itaffects behaviour and social systems. And right now (for the past few decades)we have been going through a shift where people no longer stick with linearlogic and simple nonlinear systems (machine logic) but have expanded intochaos, complexity and emergence - the logic of living systems (and most of theuniverse). Well, when you start treating people like living systems instead ofmachines, everything changes. And it takes a while to figure it out.

People went through a similar shift in the Renaissance with the spread ofliteracy - a fully literate culture uses linear logic rather than the haphazardlogic of preliterate societies, and social norms change as a result. And peoplewent from starting work at around 11-12 (or earlier) to continuing in schoolfor another 5-10 years. Some places in the world are still going through thisfirst transition as they modernize. If you're familiar with cognitivedevelopment at all, some cultures stop at earlier stages than others do. Allhuman societies reach a mental age of about 6-7 (the end of Piaget'spreoperational period, and Kohlberg's stage 2 of social and moral development)but only literate cultures go past that point. And now we're going past the endpoint of "modern" literate cultures into new territory.

Elesia: What are the core messages you are in hopes readers will gain from yourwork?

Anemone:That they don't have to be all grown up as soon as they finish high school oruniversity, and that there's an actual roadmap that can help them continue to mature.It should help with getting support from families, grad schools, etc., forthose whose instincts tell them not to settle down yet.

Elesia: How do you feel the concept of it taking more time to grow up relatesto individuals with developmental disabilities, such as autism? For example, Iam very different in adulthood in comparison to childhood. And I am stilllearning new things everyday. Some individuals with disabilities are unable todevelop beyond a certain point due to factors such as profound support needs,significant Intellectual Disability, and/or services and supports that do notmeet the individual's needs. How does your theory apply to people withdevelopmental disabilities who are in a situation where they are supported,self-determined, and able to make strides in regards to common life milestones?

Anemone:I don't think autism has anything to do with whether people continue to maturepast linear logic or not. That has more to do with feeling like you havepermission to think for yourself or not - whether you're immersed in anauthoritarian environment (which doesn't allow that kind of growth) or not. Andyou don't have to be economically privileged either. Some people travel toAfrica or Southeast Asia to visit foreign cultures - I went to the NativeFriendship Centre downtown to attend sacred circles and sweat lodges. And I didan enormous amount of reading - libraries are a godsend. (And now theinternet.) All you need is to be exposed to contrasting points of view (insideand outside yourself) and to be open minded enough to study their logic.

On the other hand, development past linear logic has a great deal to do withhow autism, and disabilities in general, are perceived. My impression is thatthe medical model and the drive for a "cure" is linear logic, andneurodiversity and the social models of disability are complexity theory.There's more room for people to be different with complexity theory.

Intellectual disabilities are another matter. There are people who do notdevelop all the way to a mental age of 16, for whatever reason, and this putsthem at a disadvantage culturally. If you raise the threshold mental age of anadult to late 20s or early 30s, then even more people will probably not make itall the way to the end, which could increase the number of people considered tobe disabled. I don't know if IQ makes any difference past a certain point ornot. I suspect that emotional intelligence may be more important fordevelopment into the complexity period. Regardless, this is something that willbecome relevant at some point down the road.

Elesia: Have you applied your theory to yourself? If so, what strikes you asmost interesting in relation to your life experiences as a person on thespectrum?

Anemone:I went through all this before writing about it. I went through all of itbefore seeing it described in Anderson's The Stages of Life, even. So theorycame after experience.

It'spossible that going through all these new cognitive developmental stages myselfhas affected how I perceive myself as an autistic person. It's hard to say. Iwasn't really allowed to be "disabled" growing up, and it was closeto the end of my development (early 30s) that I went looking for a diagnosis.(I finished the whole growing up process at age 35.) I don't know how much ofthat was my development, and how much of that was society not being willing tosee people like me earlier.

I can say that using complexity theory to understand myself and the world makesit easier to understand myself as a person with human rights.

Elesia: What is adulthood? And how can we define it beyond age of maturity?

Anemone:Adulthood is being able to think for yourself, determine truth for yourself,and having a sense of inner completion - you aren't missing any parts ofyourself anymore. At this point, you lose the drive for inner development andshift your focus to doing things out there in the world. It comes from inside,rather than being a role we put on from the outside in.

Elesia: What currently prevents society (e.g. collective consciousness) fromadopting the views you hold about evolution and the extra time required toreach what we interpret as adulthood?

Anemone:First, this is new, so it takes a while for it to seem normal to people. It'salways hardest for the first generation or two, because you can't just do whatyour parents did and have it work. Second, it only seems to be happening whensociety shifts away from authoritarianism (which suppresses conflict insystems), and there's still lots of authoritarianism around. I think whatstarted all this in the first place is the shift away from authoritarianparenting after WWII. Researchers wanting to prevent another Holocaust found alink between authoritarianism and bigotry, and that's what triggered the shift.And the first generation to grow up under the new parenting were the ones toget involved with the second wave of feminism, the civil rights movement, thedisability rights movement, plus a shift towards authenticity and away from conformity.Take the lid off and all of this stuff comes out.

Elesia: Do you feel your experiences as a person on the autism spectrum havegiven you greater insight into your research? If not, why?

Anemone:I don't know if being autistic has made any difference or not. I mean, we'reall different in the end. I do know that I felt a strong need to go through allthis development myself because the scripts my parents gave me weren't working,but that might have been the case regardless. Certainly, I was abused, and Ineeded to rewrite that script. And I knew I didn't want to conform (actually, Itried, but I couldn't get it to work). At the core it was a drive to be wholeand authentic, to live life from the inside out. I think that's universal, whenpeople have permission.

Elesia: Do you have plans to submit your work for publication?

Anemone:I submitted to Jessica Kingsley last week at your suggestion. They say 6 weeksor less for a response (which is hugely fast) so I should know before the endof the year. If they don't take it, I will need help figuring out how to getpublished (and promoted). Hopefully your readers can help.

Help Improve Healthcare for Adults on the Autistic Spectrum

2011-10-18T12:30:00.000-07:00

World Autism Interviews: Katie Bridges/Vancouver, Washington

2011-10-03T07:06:00.000-07:00

Katie Bridges is a full time writer who lives in Vancouver, Washington. By full time writer, she means she hardly ever stops writing. Whether she's working on a piece of fiction or writing a letter of encouragement to someone, she's always at her computer typing away. She also enjoys hiking and nature. Children’s science books are another favorite. In fact, she's quite addicted to them and has a huge assortment she's collected over the years. Between writing, she spends time with my family, giving a great deal of care to her grandchildren. Together, they love to star gaze late at night and talk about the latest scientific discoveries. Check out Katie's website at warriorsoftheedge.com

Elesia: Congratulations on Warriors of the Edge! Give us a quick synopsis, plus tell us where we can go to find out more and/or place and order.

Katie: Tarek Ortzen wants what any twelve-year-old kid wants, a day to himself so he can play games in his gaming booth. He gets his chance when he signs up for the role of Stone in the latest war game, Warriors of the Edge. He figures the game will help him escape the real world and its troubles. But after one day of nonstop play, Tarek wishes he'd never heard of Warriors of the Edge. The game has brought nothing but trouble into his life.

When the game begins to blur the line between reality and fantasy, Tarek finds himself caught between those who believe in the game and those who oppose it. Is the game trying to warn him of danger or lead him into it? Tarek doesn't know who to believe.

As Tarek's home world faces the threat of destruction, he must determine whether the character he plays can make a difference in their real lives.

To find out more, visit warrriorsoftheedge.com or order a copy through Amazon.com or Barnes and Noble.

Elesia: What do you love most about the writing process?

Katie: I love the way writing takes me to another place and time, far from my present reality. Reading does the same thing for me. I can be sitting in my house on a hot summer day and suddenly, I’m stuck in a snowstorm on a dangerous mountain top. The more descriptive the book, the more I’m swept in to that world. The difference between reading about a picturesque scene and writing it myself is that the imagery has a more powerful effect on me when I’m the one writing it. In order to produce a descriptive scene, I must enter fully into it. It has to be real to me. As I step into the scene, I’m looking around at the scenery. I’m seeing every detail. I’m observing whatever my characters might be experiencing in that moment. I’m literally feeling the impact of what is taking place there. If it’s a tender scene, I will have a big smile on my face. If it’s scary, I will likely be biting my lower lip. If it’s cruel, my forehead will be furrowed in wrinkles. If it’s humorous, I can be heard laughing out loud. I allow myself to go deep into that experience so that it feels real.

One of the scenes I’ve created for Warriors of the Edge involves a transfer station. It is much like an airport, except it takes you from one dimension to another. I have walked through that transfer station countless times. I can tell you what the entrance looks like, how wide the aisles are, and how crowded it is, depending upon the time of day. I have traveled from one point of that transfer station to the other. I’ve seen things going on in there that aren’t mentioned in my book. Because I always see more than I end up writing about, I’m able to experience my scenes more fully than my readers. This is the advantage of writing. Writing for me is an experience that makes life richer. I feel as though I know what it’s like to travel through space or descend into the depths of the ocean, all because I’ve written about it.

Elesia: Do you feel being on the autism spectrum gives you a unique viewpoint of life that comes through in your writing?

Katie: Absolutely! Growing up, I had a very limited way of thinking, mostly due to how repetitive my mind was. I would get one thought stuck in my head and I would repeat it for days on end, being unable to think of anything else during that time. It didn’t allow me to catch on to other things going on around me. My world existed of that one thought. In the beginning stages of my life, this was a problem for me. I wasn’t able to learn as quickly as others because I wasn't taking in as much input as they were. But that “problem” also held great potential for an advanced thought life. It was by thinking on one thing for long periods of time that I was able to expand on that thought and figure out all that it entailed. It was my way of studying something to the inth degree. Eventually, after a few years, I would become an expert on that thought and then I would move on to other thought. I’ve kept up this pattern throughout my life so that I now have quite a collection of ideas and concepts I’ve developed along the way. This brings much flavor to my writings and adds to the details I come up with.

Another advantage I have in my writing is that I see pictures in my mind all the time. Those pictures tell me stories. It will happen in a flash. In a split second, an image will flit through my mind and an entire scene will unfold before me. I can see it so clearly that it’s easy to write up what I’ve seen.

I view everything with a questioning, analytical mind, always probing deeply, but I’m also quite emotional, and so I put a lot of emotion into my findings. This enables me to describe a scientific scene with feeling. I may not be well suited to laboratory work, but this combination of traits is perfect for fiction writing.

Elesia: What advice do you have for aspiring writers who have disabilities who might feel intimidated by writer's agents, the publishing world, and the press?

Katie: Facing a myriad of responses from all sorts of different people can be tough, especially if you’re easily intimidated. You need a way to compensate for this difficulty. The best way, I’ve found, is to surround yourself with supportive voices who can keep you encouraged during this process. What makes it even tougher is that there are people nowadays who don’t hesitate to speak forcefully or even hurtfully to others. I grew up in an era when adults would say, “If you don’t have something nice to say, don’t say anything at all.” Most people abided by that rule, more or less. It’s not so much that way anymore. When I’ve been unfairly criticized or handled in a rough way, I’ve gone to people who will speak out the opposite of that so they can undo the hurtful word I’ve heard. Then I cling to that and do my best to shrug off the negative remark. The more positives you can collect, the more you will be cushioned from these blows. You might want to write out the positives and keep them posted where you can see them. Anything that works for you, go for it.

My mother used to say, “Prepare for the worst and hope for the best.” It’s helpful to prepare yourself ahead of time so that nothing takes you by surprise. If you have a realistic expectation of what might happen, it girds your mind so that you’re better able to handle any negativity that might come your way. But the surprise could be that you run into people who handle you with care, making it easier for you. I’ve had some negative experiences along the way, but I’ve had far more positive ones. Thankfully, there are plenty of people out there who still believe that kindness is important. I hope they are the ones you run into!

Sometimes it is our dreams that help carry us through impossible situations. For an easily intimidated person, having to deal with rough treatment can be an impossible situation. But the tenacity that develops from having a dream can bring you through that. Think of yourself as the Energizer Bunny, who just keeps going, no matter what. Keep going. Live your dream and the reward will be yours in the end.

To read Katie's interview on Autism Women's Network (AWN), click here.

World Autism Interviews: Shannon Reynolds/Portland, Oregon

2011-08-30T15:17:00.000-07:00

ShannonReynolds is a thirty-something wife, mother, and former teacher for Deafchildren. She and her husband, Matt (both are Deaf), have two sons, ages 8 1/2and 7, who are Hearing. Their eldest son, "Jordan" is on the spectrumwith Asperger's. Shannon enjoys reading, drawing, crafts, antiques, gardening,farmers' markets, being in nature, watching films and spending time with familyand friends.

Elesia:Were you born deaf?

Shannon:In a nutshell, probably. For the longer version...

My parents suspected I wasdeaf when I slept peacefully right through the banging of pots and pans. Theytook me to the doctor and it was confirmed I had a profound sensorineuralhearing loss, which means you literally have to yell in my ear for me toregister any sound. I was 9 months old. I have come to appreciate the abilityto sleep through any sound! That changed when I couldn't sleep through flashinglights that went off whenever our two boys as babies cried. Then, I got a tasteof what it was like to be hearing and suddenly wake up to "noise"!

Many Deaf people list thecause of their deafness as genetics, illness, or unknown. My husband becamedeaf as a result of meningitis at 18 days old. Since my mother did not recallanything more than the common cold while pregnant with me and I did notexperience illness associated with deafness as a baby, doctors put me in the"unknown" category. At age 2, way back in 1975, my family exploredthe possibility of genetics causing my deafness. Doctors then said it was apossibility that a recessive gene passed down by both my parents may have beena cause. Of course, they couldn't prove it. It would be interesting to explorethat possibility with the advances in the genetic field since then! Both ourboys were born hearing so the cause is still primarily "unknown".Doctors have always said I was born deaf and I have been deaf ever since!

Elesia:Do you use either hearing aids or a cochlear implant/s?

Shannon:I was fitted with hearing aids when I was 18 months old and wore them consistentlyuntil I was 30. They helped me hear noises however, I had to look at the personand lipread in order to make sense out of the words I was "hearing".Otherwise, it was mostly jumbled. Hearing people have asked me if what I"heard" sounded like the teacher in Charlie Brown specials, "wawa wa wa wa". Kind of like that, yes. Lipreading involves many factors.Thick moustaches, stiff lips, looking away from me, or even over-enunciatingmakes it difficult for me to lipread.

I had to stop wearing hearingaids because of vertigo/inner ear/imbalance issues that developed later inlife. Since I already depend heavily on sign language, I was more okay with itthan not.

As for cochlear implants,I support them for whoever has weighed all the options available and still wantthem. Since hearing aids benefited me, I did not seek a cochlear implant untilI heard that in some cases, it could make vertigo virtually disappear. In mycase, the doctor believed it would make it worse. I decided right then that I wouldrather be standing upright vertigo-free, not hearing anything, and be with myboys as much as I can.

Elesia:Are you fluent in ASL? Do you have a preference for English or ASL?

Shannon:ASL is a beautiful language! ASL is a beautiful language and I cherish it, however,I am not a native ASL user. Anative signer usually is a person (Hearing or Deaf) who was born to one or twoparents using ASL. Their first language is ASL. A native signer also could be aperson who attended residential schools for the Deaf in which the curriculumwas taught in ASL.

My parents were faced withthe decision to place me (at 18 months of age) at either a residential schoolfor the Deaf or the closest self-contained classroom for Deaf children. I grewup in a small town in California and the state school for the Deaf in Fremontwas too far. I wanted to be physically close to my family rather than stayingin a dorm overnight. My mother learned SEE (Signing Exact English), which wasencouraged in many mainstream/self-contained classrooms in the 1970's, and sheeven interpreted for me everyday in elementary school. I started mainstreamingin 1st grade. She was a pioneer in those days when there were little resourcesavailable for sole mainstream Deaf children in small towns. And I am grateful tomy mother for her dedication!

As an adult, I prefer toconverse in either pure ASL or "ASL signs in English order". Myhusband is Deaf and most of our friends (Hearing and Deaf) sign to somecapacity. It is much easier on my eyes and communication flows more smoothlythis way.

To answer your question, Iprefer to converse in ASL even though I write, think, and speak in English.

Elesia:Tell me about your family. You have a hearing son on the autistic spectrum,right?

Shannon:Matt and I have been married for almost 12 years. He is my soul mate and we arevery blessed with two boys, ages 8 1/2 and 7, in addition to a cocker spanielnamed M & M. Yes, now you know the name of our favorite candy! Matt and Iare both Deaf and our sons are Hearing. Faith in God has carried us throughmany wonderful, challenging, and rewarding days.

Our oldest son is on theautistic spectrum. I will call him "Jordan" during this interview forprivacy reasons. Please know that we are not trying to hide our son's identityor him being on the spectrum. He is still very young and when he is ready todeclare himself to the world, we will most definitely support that! Jordan is a*whole* person who happens to be on the spectrum and we don't want peoplezooming in on his "label" without first knowing him for his strengthsand what he offers to the world. Whatever "label" we have, I thinkevery person deserves a chance to be known first.

Jordan was born with veryintense eyes and ears. From the start, we knew he was an incredibly sensitiveboy. When he was less than 24 hours old, he turned his neck towards his daddywhen he talked. We knew without a doubt that he recognized Matt's voice. He wassensitive to loud, sudden noises and would cry for a long while. Sometimes itwould be challenging to get him to smile. Looking back, we now know why. Hiseyes always looked thirsty for knowledge. Jordan was first introduced to a bookat 4 months old, and he was mesmerized. He has been in love with books sincethen! He talked early, could recite the whole alphabet at 13 months, read fullsentences in books at 2 1/2 years of age, and is now reading at ahigh-school/college level. He has competed in two school spelling bees and wonthe first one. He recently finished 2nd in a neck-to-neck competition with a7th grader and hopes to compete in the Scripps National Spelling Bee someday!

He loves Jeopardy andWheel of Fortune and anything to do with spelling and trivia. He loves to readnovels, comic books and reference books and to do research on the Internet. Heloves Poptropica, Wikipedia, Marvel superheroes, everything Mario, the historyof the U.S. Presidents, the Diary of A Wimpy Kid series, Big Nate, Adventuresof TinTin, The Edge Chronicles, and the history of arcade and video games (andso much more). Jordan tends to dive into a subject and learn everything he can.He is a movie buff and can recite the 10 top-grossing films of all time and theamount each movie has made. He has an amazing memory! He is particularly closeto his younger brother and really prefers to be with his family and a few closefriends.

When Jordan was almost 2years old, we noticed some behaviors that made us suspect autism. He lovedlists and would repeat them, and had some other behaviors that were a result ofeither being over stimulated or seeking sensation. We took him to an autismclinic and they diagnosed him with PDD-NOS, with a possible diagnosis ofAsperger's when he was older. We are now convinced Jordan is on the spectrumwith Asperger's. Because he is also profoundly gifted with some aspects ofADHD, it was not crystal clear until he was 7-8 years old. Obviously, we arelearning and there is much to learn still!

Jordan knows aboutAsperger's. And he is amazed to know about famous people who also are on the spectrum.He has befriended a few kids at school who are on the spectrum. When he firstdiscovered he was on the spectrum, he said, "It's no big deal. You andDaddy are Deaf, so..." :-) Jordan seems relieved to know and heunderstands himself even more as a result.

Elesia:What is the predominant language used in your home? And how does Jordan feelabout ASL?

Shannon:Because both my husband and I grew up with Signing Exact English (SEE) andlearned ASL as adults, we now tend to use ASL signs in English order in ourhome. We have always signed with the boys since they were born--even thoughthey can hear--because we wanted to know them and them know us. We usually talkand sign at the same time with them, although we turn off our voicesoccasionally.

Jordan has always beenwilling to use ASL, even though he is a strong auditory learner. He wants tocommunicate his thoughts and ideas with us and he knows that we depend on ASLto understand. He sometimes wishes that we could converse in speech onlybecause it is easier for him, but he is also used to signing. It is what he hasalways known.

Elesia:Some individuals who are both Autistic and Deaf mention that they find ASL tobe demanding, as the language relies heavily on interpretation and use offacial expressions and body language. Do you feel Jordan struggles with thataspect of ASL?

Shannon:Yes, Jordan struggles with different aspects of ASL. He is able to maintain eyecontact with us though, and perhaps because we are family and are familiar tohim? Because of his ability to maintain eye contact, he does see our facialexpressions. We think he does rely heavily on the *words* being used and if wedid not use facial expressions, he would still get the message. I supposeJordan probably doesn't depend as heavily on facial expressions forunderstanding, as Deaf people do.

What Jordan strugglesmostly with is the speed of his thought processes and signing them out. Hewould much prefer to fingerspell. It is the opposite for most Hearing peoplewho know signs. They internally groan when they have to fingerspell long listsof names at graduations and are relieved when they can sign full words again.Not with Jordan! It's almost soothing for him to fingerspell. Signing can becumbersome for him, especially when his mind is racing so fast. He does have agood ASL vocabulary ready to use if we ask him to "Slowwww down" or"Switch to signing mode". After a minute or two, it's back tofingerspelling!

Elesia:What challenges do you face being a Deaf parent to a hearing child on thespectrum (if any)? And what is something you feel would help you?

Shannon:The biggest challenge I face being a Deaf parent is not being able to overhearpeople around us who talk with Jordan. If another child is trying to befriendJordan, I feel ill equipped at the moment to guide Jordan through theirdialogue. During their conversation, I have to depend heavily on facialconversations to see how smoothly it is going. I find myself relying onscripts, conversation etiquette, and social "rules" I have learned asa Deaf person. That has helped whenever Jordan and I talk about a socialinteraction *before* or *after* an incident. *During* has been the mostdifficult. Not only are we dealing with challenges with Asperger's, but withDeafness. These are two similar, yet different, worlds trying to communicatewith the bigger world out there at the same time.

I think it will always bea challenge because we live in a predominantly non-Deaf and non-Asperger'sworld, but in the meantime I think what will help is:

1) Time.

2) Patience.

3) Humor.

4) Prayer (lots of it!),hoping that things will turn out all right in the long run.

Elesia:What supports does your community lack that you would like to see for yourfamily?

Shannon:I would like to see support groups for Deaf parents who have a child on theautism spectrum. There are support groups for Hearing parents of children onthe spectrum and certainly Deaf parents can attend and benefit from them. Thisusually means the cost of hiring an interpreter, which can be expensive for thegroups already struggling with low funds. There are unique aspects to the Deafparent raising a Hearing child on the spectrum that it almost requires a wholedifferent support group.

Hearing children on thespectrum also could use a support group. They have double challenges, beingAspergian in a non-Aspergian world, and being Hearing in a Deaf home.

The invention of a devicethat captions/translates the dialogue between my son and a Hearing person wouldbe most welcome! I know that's far-fetched wishful thinking, but with thetechnology age we live in, why not?!

Elesia:Do you see any similarities in challenges between autism and deafness?

Shannon:Yes, very much so. Each person on the autism spectrum and deafness spectrum areunique individuals, both the same and different. I think a person who is bothautistic and deaf is the best person to answer this question because theyexperience both worlds firsthand.

We have learned over timethat we are "different" from the majority, but that we must embraceour differences and realize that we ALL are in the same majority on a journeycalled "life". A personwho is Deaf may depend heavily on facial expressions and miss out on verbalcues such as tone of voice or idioms/phrases that Hearing people use. A personwho is Autistic may depend on the written word and other avenues and miss outon the social cues such as facial expressions and nuances. We learn that we"miss out", but we also learn that others actually miss out in thewonders of our world. A Deaf person sees things a Hearing person doesn't, andan Asperger's person sees things a non-Asperger's doesn't. In the big picture,we ALL miss out and gain something as a result.

I believe many of us seekpeople "like us". It gives us a sense of likeness, unity,understanding, and knowing "we are not alone." This is why many Deafand Autistic children and adults seek friendships with those who truly dounderstand the unique challenges they face. This is evident in both Deaf and AutismSpectrum cultures. This is why each culture has its own advocacy groups,websites, forums, annual conventions, and the like.

Elesia:Do you feel your son is accepted and understood by your local Deaf community?

Shannon:It's too early to tell whether Jordan is accepted or understood by the Deafcommunity. The Deaf community's viewpoints are diverse. Some would say Jordanis not accepted because he is Hearing. Some would say he is not acceptedbecause he is Asperger's, and not Deaf. Some would say yes, he is acceptedbecause he has Deaf parents and makes every effort to communicate in ASL.

What we focus on is notthe community at large, but the circle of family and friends around us. Thefriends we have who are a part of the Deaf community, I do feel they acceptJordan. Not because he has Deaf parents or because he is Asperger's but simplybecause he is Jordan.

Elesia:What do you wish the Deaf community understood (as a whole) about people on thespectrum?

Shannon:Eye contact is very important to most Deaf people. It is their gateway tocommunication, either through signing or lipreading, or both. Many Deaf peoplefeel it is rude to look away during a conversation because it can beinterpreted as "This conversation is over." For some people on the AutismSpectrum, it is painful to look at another person's eyes. It's not a choice forthem to look away. It is a necessity to function. My hope is that the Deafcommunity as a whole understands that there are creative ways to communicatewith people on the spectrum if eye contact is an issue. When there is a will,there is a way!

Elesia:What do you think parents, educators, and service providers should know aboutindividuals who are on the spectrum? What valuable insight have you gained thatyou would like to share?

Shannon:I am amazed at how many people are able to look beyond the label of autism andsee the individual as that...an individual. A large part of that is trulylistening to adults on the spectrum who are voicing to the world who they are,the joys and challenges they face being on the spectrum, and through books(John Elder Robison, Donna Williams, etc.), documentaries, movies (TempleGrandin), and especially advocacy networks/ websites such as yours, Elesia.Your championing neurodiversity is a great asset for future generations ofpeople on the spectrum and those who love and work with them. On the behalf ofour son, thank you!

Despite breakthroughs ineducation, science, and technology, some parents, educators, and serviceproviders *still* see only the "pathology" in a Deaf or Autisticperson. As a result, they are left feeling inferior. What service providersdon't realize is that Deaf and Autistic people can sense that a mile away andare deeply offended. We want to be seen as people, period!

One major issue I havewith medical literature and their criteria of being on the spectrum is this:"lack of empathy". Every time I read those words, I get so angry! Ihave seen Jordan cry because his brother is hurt, asks me "What's wrong?",or wanting to put on a play so he can earn money for those affected by theearthquake in Haiti, wanting to give all of his money to those who arestarving, and he also says "I love you" often. One Asperger's adultsaid it so well: "Sometimes, we have too much empathy!" I stronglyand firmly believe that. In fact, some non-Autistics have no empathy at all!

Those words "lack ofempathy" are very misleading and detrimental to parents who have momentsthroughout the day where they do see empathy from their autistic child. It canactually prevent them from seeking critical early intervention services becausethose concepts just do not fit their child. That needs to change...now.

Thank you to those whoallow us to have our VOICE. Our voice...Deaf or Autistic...DOES matter!

World Autism Interviews: Jessica Sergeant/Kingston, Ontario

2011-07-24T19:17:00.000-07:00

Jessica lives in Kingston, Ontario. She is profoundly deaf and uses American Sign Language (ASL) as her main mode of communication. Jessica was recently diagnosed on the autism spectrum. She has a Master's degree in Business Administration and a Bachelor's degree in Accounting. Jessica is studying for her Certified General Accountant certification, which she expects to complete in 2013. She is a globe trotter, and has traveled to over 30 countries! And she likes to scuba dive whenever she can. Her current interest involves learning as much as she can about Asperger's Syndrome as she is in hopes of becoming an advocate in the near future. Jessica will be presenting at the Canadian Deaf Women's Conference in Niagara Falls in July of 2011.

Elesia: Were you born deaf?

Jessica: The cause of my deafness is unknown, but my mother suspects genetics. There are several distant relatives of mine who have hearing loss. I have never met them, so I am not sure what type of hearing loss they have.

Elesia: Do you use either hearing aids or a cochlear implant/s?

Jessica: When I was growing up, I wore hearing aids everyday until I transferred to a residential school for the deaf, which then was limited to weekends. I stopped using hearing aids at 19 years old. Additionally, I quit speech therapy at age 12. Both of them did not quite benefit me as all I could hear were garbled sounds and I felt that I identified myself as a culturally Deaf person.

American Sign Language (ASL) is my first language, and it is the language I communicate and access information through. Spoken language never really was advantageous and was tremendously stressful to learn.

Elesia: What was school like for you? Do you feel your needs were accommodated? If not, why?

Jessica: I was mainstreamed until age 11. There were no sign language interpreters and I had to rely on looking at other students' work to get an understanding of what was expected. In addition, I had an educational assistant for an hour 2-3 times a week. Classroom access was nil as I could not understand any of the students or the teacher. Reaching my potential to the fullest was inadequate. The mainstream school was ill-equipped for deaf students.

When I was 11, I started attending to a school for the deaf. All students were Deaf and the classes were instructed in ASL. I could understand everything that was going on in the classroom. My peers looked at me as an equal rather than a “defective” person.

Between these 2 experiences, the school for the deaf was more beneficial as appropriate supports for me were in place as Deaf person. Students at my mainstream school weren’t very accepting of me because of my deafness and I was excluded. And that wasn’t the case at the school for the deaf.

On the other hand, I always did felt different amongst my Deaf peers. My socialization and communication skills weren’t on par with my peers. It seemed that I struggled substantially in these aspects, but was doing academically well and was involved in various sports/committees.

Since Asperger's Syndrome was not recognized until 1994, I fell through the cracks and was not diagnosed with it until last year at the age of 30. I self-diagnosed myself with it a year after first learning about it through the TV series, House, M.D. Then I obtained an official diagnosis of my self-diagnosis.

Elesia: What could have been done to make your schooling experience better for you?

Jessica: Well, I think I would have benefited greatly if I had a mentor for socialization and communication skills. That individual could have been someone to turn to whenever I had difficulties in those areas. Additionally, awareness about Asperger’s Syndrome would have benefited myself and my peers. They might have been more understanding of why I was “stubborn" or "self-centered," or why I had to "have things my way."

Elesia: Did your parents ever suspect something else in addition to hearing loss while you were growing up?

Jessica: Since I was deaf, I would assume that my family never suspected something else. They most likely attributed my differentness to being deaf. My peers did mention to me that they did feel that there was “something” about me, but could not pinpoint what it was until I disclosed my Asperger’s Syndrome.

Elesia: As for being on the spectrum, did you always feel there was something different about you, even when you were around other Deaf people and immersed in Deaf culture?

Jessica: Even though I was a part of the Deaf community, and everyone was "accepting" of me, I still felt like I was an outsider. Often I felt like I was the fish in a fishbowl - watching, but not really interacting. Everyone seemed to know "their place" while I was trying to figure out "my place".

There seemed to be this invisible expectation that everyone knew how to follow and I felt like I was on a social minefield. Social steps I took were often disastrous or out of extreme fear.

Elesia: Do you presently feel accepted and understood by the Deaf community?

Jessica: Before my diagnosis, I did not feel truly accepted for who I was. It often felt like that I was constantly failing to meet social expectations and I felt false as an individual. There were masks that I was wearing and I wanted to yell out that I was *Jessica* and wanted to roam around being true to myself.

Since my diagnosis, I am slowly letting my authentic self come out. However, since my diagnosis is very recent, I’m still coming to terms with how it defines me as an individual. There has been a paradigm shift since my diagnosis. I have disclosed my diagnosis to several people. To date, they have been accepting and understanding.

Elesia: What do you wish the Deaf community understood (as a whole) about people on the spectrum?

Jessica: ASL can be very demanding of me. There are facial expressions we are expected to identify and read since it indicates grammatical meanings. Body language meanings, which I often struggle to interpret, are also very important and signers are expected to know them. Too often I have missed things until someone points out that I have should know better. It was “obvious” that this or that happened.

The Deaf community is infamously known for hugging everyone we know upon greeting or before parting. This can be taxing sometimes because of my sensory issues. In the past, I have been accused of being cold or rude for not hugging “hard” enough. It is not my intention and it is just that my body sometimes is oversensitive to other people’s touch.

Elesia: What unique challenges do you face as a person who is both Deaf and on the spectrum?

Jessica: Since my diagnosis, I have recognized that I face double barriers. First, I need accommodations related to being Deaf. That means I require an ASL interpreter for interviews, meetings, and appointments. Interpreters are difficult to obtain on a short notice, and I get very stressed if one is not arranged. That can be a barrier to finding employment. Second, it exhausts me to socialize since I have to pay attention to key social rules. For instance, I’m constantly reminding myself to sign within my body, smile when appropriate, take turns in conversations, and not talk too much about a topic.

Elesia: What do you think parents, educators, and service providers should know about individuals who are both Autistic and Deaf (or individuals who are on the spectrum and who also have a significant hearing loss)?

Jessica: That is a tough question. Basically, both being on the spectrum and Deaf is a double challenge. There must be double strategies implemented in order to integrate in a world that is often confusing and full of invisible barriers.

Even though I may not show it, I often suffer in silence. When an ASL interpreter is not arranged for anything, I meltdown within myself. Thus, when I want to participate in my special interest and an
interpreter is not provided, this is a double whammy for me. Without the interpreter, I am not included fully in my special activity.

Back in April, I attended John Elder Robison’s lecture and requested an ASL interpreter and was THRILLED that one was provided. Imagine that if I was refused, I would be unable to attend as I would be unable to understand anything.

Also, it is important to note that I also struggle with accessibility issues related to captioning and subtitles. It often frustrates me that I want to watch a YouTube video that was viewed informative by others, but cannot watch it due to lack of subtitles. Anything related to knowledge building that lacks subtitles irritates me. I feel that I have missed out a lot on important information.

Elesia: Is there anything you are--or want--to do to raise awareness about our unique population (Autistic and Deaf)?

Jessica: I will be presenting about Asperger’s Syndrome at the Canadian Deaf Women’s Conference in Niagara Falls on July 26th. This will be my first public advocacy about the spectrum. Recently, I was asked by a local autism chapter to give a presentation, so I am looking into this. Since I was only diagnosed last year, I think I have done great strides in such a short span of time. I will see where this
leads to and perhaps I will become an international advocate. Right now, I am taking it one step at a time.

Elesia: In my own experience, I have expressive language issues, and it does not matter whether I use English or ASL, I still struggle to express myself unless I use written communication. Do you also struggle with expressive language? If so, how do you feel about English and/or ASL?

Jessica: When it comes to expressing myself, I am better able to articulate through written words rather than through ASL. Sometimes, at the moment of expressing--when using ASL--I am unable to find the words that would fully explain what I am thinking/feeling. Too often I have felt pressured to make quick responses when they aren't exactly what I had intended. The words did not come across as I had intended or it was an incomplete response. Also, the Deaf community is known for waving "I Love You" to everyone. I personally don't practice that as I don't see the point in flaunting that sign to everyone.

Autistic Pride Day 2011

2011-06-18T10:09:00.000-07:00

Strong communities know they need everyone, as there is unrecognized capacity and assets in every community. Who are we? The Autistic community. We are a collective consciousness of citizens at the center of the national conversation about us. We are advocates and leaders involving others as we ask, listen, motivate, and insist on Nothing About Us Without Us! Most importantly, we recognize that everyone on this planet deserves a chance to make a wonderful life.

Happy Autistic Pride Day!

My Interview with The Riot!

2011-04-25T16:21:00.000-07:00

I was recently interviewed by Nancy Ward who is an Editor for The Riot! newsletter. Here's the full scoop:

Nancy: Please tell me a little bit about yourself. What is your role with Autistic Self Advocacy Network, and what else would you like Riot readers to know about you?

Elesia : I am the National Chapter & Outreach Coordinator for Autistic Self Advocacy Network (ASAN). I also work with several other organizations including Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and Autism Women's Network (AWN). Classical ballet is a passion of mine. I love training and performing, in addition to reading and writing both fiction and non-fiction.

Nancy: How do you use technology in your daily life? And what works best for you?

Elesia: Technology is the mainstay of my job. I would be lost without my MacBook! ASAN Board members, employees, and Chapters are based all over the States. We use the Internet to communicate via email and Instant Message (IM) chats. Phone calls account for an extremely small percentage of communication.

What works best for me? Email or IM chat services such as Gchat or Skype--no phone or video, text only.

Nancy: Why is technology important to you?

Elesia: Not only am I Autistic, but I am also Deaf. The Internet breaks down--if not smashes--communication barriers often presented through traditional work styles. For Autistic people who struggle with communication issues, and/or sensory overload, connecting via Internet can provide a much better option for meaningful participation. Conducting meetings online when possible via an IM chat service is extremely important. Phone conversations and/or meetings can pose a problem for Autistics who have Auditory Processing Disorder and who might struggle with voice as opposed to text. IM chats also often provide a workable solution to address social anxiety issues.

Melanie Yegeau, an ASAN Board member, brought up a lot of points when we recently spoke about technology. In summary, at root, the digital divide issue has to do with accessibility (very broadly speaking). Adam Banks' book Race, Rhetoric, and Technology breaks down access into some very handy-dandy categories.

-- First: there is material access -- that is, having the means to own a computer, pay for the internet, etc. (An aside: This is certainly an issue that Autistic people, and disabled people more generally, face. Unemployment and underemployment rates for Autistic people are high.)

-- But access isn't just about having money to buy things. This is a fallacy. It also involves functional use: that is, understanding how to use technologies in fruitful and productive ways. Social media can be of immense benefit to Autistic people, especially in a self-advocacy sense. But we're not necessarily trained to be self-advocates, and we're certainly not trained (at least not very often) to use social media for advocacy and activism purposes.

-- According to Banks, another layer of access includes critical use: that is, understanding the advantages and disadvantages of technology, and having the option to resist use of certain technologies. Again, this can present a problem for Autistic people: In what ways are we afforded the right to refuse to use something -- be it a specific computer program, certain AAC device, picture board, etc.

A lot of positive things surrounding critical use have come up for Autistic people. We don't just use social media because it's there -- we critically analyze its positives and its drawbacks.

-- Banks says that the most encompassing form of access is that of transformative access. This is key to self-advocacy, and key to surmounting the digital divide. Transformative access involves direct participation in the very design of certain technologies. I feel transformative access is another name for universal design. A technology cannot be truly accessible unless its users are also its designers.

Nancy: Given all the different types of technology tools that are out there, how are you able to get information out to ASAN members quickly, especially for things like legislation and budgets that might need quick action?

Elesia: Here I am answering Internet to every question. And it's time to do so again. Internet. Internet. Internet. Smiles. Honestly, it's really simple: We send mass emails, post to listservs, post to social networking sites such as Facebook, and connect with committees, organizations, and other persons within the broader disability community.

Nancy: Members of a self-advocacy group might have a different understanding about how to use technology. How do you teach somebody who is just learning?

Elesia: Part of my job involves teaching Autistic self-advocates how to use technology. Sometimes, it boils down to me sending an email to a potential ASAN chapter leader with instructions on how to go about downloading and signing into Skype. From there, we might have an IM chat--including step-by-step instruction--on how to set up a Meetup site to advertise their chapter. In a nutshell, if someone can understand how to send and read a basic email, that is all I need to do my job efficiently.

As for accommodating people who are just learning how to use technology, this is a goal we're continually working toward. Not all Autistic self-advocates have access to computers, and some individuals may have a difficult time using computers, reading instructions, etc. There aren't always easy answers, which leads me to note what access and self-advocacy are about... constantly brainstorming on what we can do and how we can do it better and more inclusively.

Nancy: Do you think that technology is going to be something we use in the future as a tool?

Elesia: Yes! And I wouldn't want to be a part of a future that shunned technology. Speaking of technology, I just got a new Apple iPhone 4. Now I am connected wherever I go via plane, train, or automobile (as long as there's a service tower near). Within the span of 15 minutes, I can:

1. Have an American Sign Language conversation with my husband using FaceTime Video Call

2. Text message my lovely boss, Ari Ne'eman, and request an extension on an assignment because it got put off due to my excessive YouTube ballet video watching (kidding Ari!)

3. Download the latest e-book on Disability Rights

4. Send an email

5. Surf the web, or post a message to Facebook

6. Chat on Skype

All of this happens from a phone the size of an extremely thin camera. Will smartphones and technology be something we use in the future as a tool? You bet! They are the future!

World Autism Interviews: Melody Latimer/Texas

2011-04-08T14:57:00.000-07:00

Melody Latimer is an active Autistic adult. She lives with her husband and two beautiful Autistic boys. She volunteers at her sons' school, directs the Dallas-Ft. Worth chapter of the Autistic Self Advocacy Network, and is also a part-time employee for ASAN. She runs the website ASParenting for Autistic parents and manages the corresponding email list. Melody is working on a book about Autistic parenting, which is meant as a guide to neurodiverse parenting.

Elesia: When did you receive a diagnosis on the autistic spectrum?

Melody: I received my initial diagnosis in the summer of 2008. This was a year after my oldest son was diagnosed and only a few months after my youngest was diagnosed.

Elesia: Autistic people who are diagnosed later in life often share that an ASD diagnosis does not seem foreign, but more like an official definition that finally sums up how they have experienced the world throughout their lives. What are your thoughts?

Melody: Before I was diagnosed, I had been diagnosed with a plethora of anxiety disorders and depression. Most of the symptoms for all the diagnoses combined easily equaled up to Autism. To me, it wasn't necessarily something that finally summed my experiences, but what combined all my previous diagnoses. There was a slight deviation from where I thought all those diagnoses came from, especially OCD and Social Anxiety. I now don't even try to treat those as I feel they can be useful to me.

Elesia: You're the mother of two boys on the spectrum. Being Autistic yourself, do you feel you have firsthand insight into what your boys are experiencing? If so, please share a few examples.

Melody: I definitely think that being Autistic has helped me understand my boys. I remember, before any of us was diagnosed, my oldest would push this bus that sang “Wheels on the Bus,” but only when the wheels went round. He got down on all fours, and rolled it back and forth looking under the bus. My in-laws thought this was strange. But I knew as soon as I turned it upside down why he was doing it. The speaker that sang was underneath the bus.

I use this skill all the time. If they are having a particular issue at the school, I will go in and observe and tell them things that they could change. Most of the time my changes are right on. It also helps to explain to their new teachers why they do certain things. Autism doesn't explain everything, but the things it does, I definitely feel I have an advantage over others.

Elesia: What are some difficulties you face being a parent on the spectrum? All parents--regardless of whether disability is present--can become overwhelmed and stressed. Do you happen to face any unique challenges being an Autistic parent?

Melody: Some of the biggest difficulties I have aren't necessarily to do with parenting--most are related to being a parent. Going to social events has always been difficult for me, but as a parent, even to two Autistic boys, you are obligated to go to things. Birthday parties, PTA events, school concerts, and so forth are just not my strong suit. I continue to do them because I know that my kids exposure to these from a young age will help them along. I never did any of that as a kid and I think it left me at a disadvantage of learning how to properly regulate myself.

As for unique challenges, I think the sensory issues are the worse. I have auditory sensitivities, so crying, or whining, or sometimes even just constant talking can be really difficult to take. I'm also tactile defensive, so light touch has always been a problem. When the boys were babies, I would have to lay them on the floor, and lay beside them, because their little movements were too light. I wanted to give them plenty of love and nurturing, but I couldn't hold them for more than 5 minutes without becoming very uncomfortable. In the end, I improvised a solution that I think worked out quite well.

Elesia: There's a notable percentage of non-autistic parents on the spectrum who make it their mission to find a cure for their autistic children. Other parents accept that their child is autistic and instead aim for securing services in the here and now to assist their children. What is your experience and opinion?

Melody: I'm definitely a here and now person. I will say that the science behind all their cause and cure search is interesting, but that's the scientist in me. The implications of that research is harmful to us all. Funding for cures only means taking away money from research and services to make their children's lives successful. We CAN lead successful lives! I want my kids to grow up, live on their own, work and be happy. If they get married, great. If they have kids, even better. But that's not what my job is as their parent. My job is to give them the tools to succeed and be happy. That is all. Services is one of the many ways I do that, and no research into a cure is going to help me in my job.

Elesia: How do you feel when you navigate the waters of hanging out with other non-autistic parents of autistic children? Do you feel accepted? Or do you feel at odds? Or both?

Melody: It really depends on the parent. My oldest son has this great friend. They love playing together. He's accepted by this other boy. And this boy happens to have a little brother who is autistic. This means I must be around their mother if they do play dates (which I do not like to deny my children of). The boy's mother happens to be a curebie. She tries to convince me my other son isn't Autistic. She thinks I should try all these supplements and diets.

On the other hand, there are a lot of parents who know my diagnosis who treat me no different. Parents of other Autistic kids at school, at support groups, and so forth are all very kind to me. We know not to bring up the subjects we don't agree on. Most are all for Neurodiversity principles for “people like me” (whatever that means). They also think it's encouraging that I have gotten where I am with no intervention or services.

Elesia: What do you want to teach your boys about what it means to be Autistic? Have you had a conversation with either of them about autism? If so, what did you make a point to discuss?

Melody: We haven't really discussed it with either of them. They're 6 and 7. While highly intelligent, they just don't understand that others have different thoughts and feelings, let alone different neurology. We try to teach them for now that it's okay to remove themselves if they are overwhelmed. We let them stim when possible and explain to them why they cannot in certain situations, ie. safety concerns (some spinning is just dangerous around a lot of people).

In the end, I want to teach them that they are different but still as equal as anyone else. I want to teach them to stand up for themselves while still being respectful of others. I want them to understand they can accomplish what they want and that all people need help from others. Being Autistic just means they think differently, they experience things differently. It does not make them lesser or greater. It doesn't make them exempt from the lessons in life. It may mean extra work or extra help, but it does not mean they cannot lead full and happy lives.

Elesia: Some parents tell their autistic children that they love them but not autism. Do you think this is damaging to autistic children? If so, how?

Melody: I think it gives a child the wrong impression. Damaging, I don't know. I think it depends on the child. Autism is who they are, how they think, how they experience life. Without Autism, they would not be who they are, but someone completely different. The neurology makes their whole world. I think many of these parents put more focus on the deficits and not enough on the benefits of their child's Autism.

Elesia: You are currently working on a non-fiction book addressing being an Autistic parent of children on the spectrum. What are 3 main points you wish to drive home? Please give examples.

Melody: In my book, I want to give normal parents some sort of way to raise their child while respecting their Autism. Autistic Parenting gives us all an insight into our Autistic child. In the book, there are three ways I'm approaching teaching typical parents about their Autistic child's world.

First, I want parents to feel the way their child feels. In one section on sensory difficulties, for instance, there is an exercise to put a piece of Velcro on their collar and where it there all day. Obviously, this will only give them understanding of their child if they are tactile sensitive. But my hope is that feeling it will help parents come up with clothing that feels good to their child. It's not about pitying the child, but experiencing to come up with better solutions. Each chapter has a section like this.

Second, I want the parents to deconstruct their preconceptions then redefining and reteaching them. With all Autistic children, the “norms” are just not going to be the same as they are for typical children. Parents often forget the development in developmental disability. Our development is just not on the same track. Parents really need to focus on their child's development, and not where the charts say they are supposed to be. Only then will they learn to teach their child is to know where they are truly at.

Last, I want parents to see how “we” did it. The Autistic parents among us have developed skills for a vast array of issues. So in each chapter of the book, there will be a personal story from an Autistic parent. They will talk about their issues that relate to that chapter, how they overcame them, then how they help their Autistic child learn those same skills. This is more than a feel good story. It's meant to show that most problems have solutions, which reinforces the lesson learned in deconstruction and rebuilding.

In the end, it's up to the parent to decide the course of action for their child. I just want to give them the skills to understand what their child is going through, how Autistic parents overcame any issue, then how to develop a plan to come up with similar solutions for your own child. It may require therapies, interventions or time, but there is a reason for everything, and hopefully a solution too.

Elesia: You run a website called AS Parenting. Tell us about it.

Melody: ASParenting is often misunderstood by the title. Many people think it's for parents who have Autistic kids. It's actually the other way around, it's for Autistic parents. I blog about my experiences with my kids, send out advocacy information and manage an email list for other Autistic parents. Those who are members do not have to have Autistic kids, just be Autistic themselves. Other welcome people are Autistic adults who are thinking of parenting. Our issues are different from those of non-autistic parents. Some members are hermit-like, others hold down jobs, and others are fervent activists. However, we have a lot of the same gripes or problems. So it's often good to go there for support. Parenting groups don't often understand our Autism, and Autistic groups don't really know how to respond from lack of experience. ASParenting gives Autistic parents a happy medium.

[Ed. the capital A used in the word Autistic, denotes the Autistic community, which is much like the Deaf community. There is a difference between being Autistic and autistic.]

Happy 2nd Birthday, Aspitude!!!

2011-04-01T10:43:00.000-07:00

Happy birthday to you, happy birthday to you, happy birthday, dear Aspitude, happy birthday to you! And many mooore...!

Wow, has it been 2 years already? And ya'll are still hanging around? Aww, thank you! No party on a massive yacht this year. Maybe next year...

[This post was originally a 3rd birthday post. But then Silly Editor realized Aspitude is only 2 years old. Time for a math class--oy vey! Nothing I can do about the 3 candles on the cupcake in the photo above. Enjoy!]

World Autism Interviews: Isabel Espinal/New England

2011-03-10T10:12:00.000-08:00

Isabel was born in New York City. Her parents are from the Dominican Republic. As for college, she enrolled at MIT and nearly flunked out. She decided science and technology were not for her and transferred to Princeton where she wound up flunking her senior thesis. Eventually, she submitted a passing thesis, earned a Bachelor's degree, and then a Master's in Library and Information Studies. She has been a librarian since 1991. Isabel is a mother to 3 children. Her kids are now teenagers (and her son is in his first year of college). She loves literature and especially enjoys translating poetry from Spanish to English. Isabel is currently working on a PhD in American Studies with a focus on Literature.

Elesia: How old were you when you received a diagnosis on the autistic spectrum, and how did your family respond to the news?

Isabel: I am 46 years old and just received a diagnosis two months ago. I started reading about Aspergers and autism through a friend of mine (Rachel Cohen-Rottenberg, who writes about her own autism since her diagnosis at age 50 on her blog Journeys With Autism). All of this is so new to me, so unexpected, and yet so wonderful too. I don't think I have completely assimilated the diagnosis yet--let alone my family.

I have a big family and I have not told a lot of people, but as soon as I started to think I might have it, I sent an email to my sister and to a few close friends. I emailed my therapist, and I also told my kids. My sister reacted by saying that she said it made her wonder how many other people in the family might have also been on the spectrum. Autism definitely resonated with her as something that may exist in our family, and I found that very affirming.

I had a friend who said, "No way," because I am very empathetic and the classic symptom of Aspergers (in her view) is lack of empathy. But I had done a lot of research and I sent her a few links that refuted that theory. She said, "Wow, I had no idea."

Another friend was very mean. He said I did not have Aspergers, that it was a fad diagnosis, and that what he thought I had was Narcissistic Personality Disorder. It was very upsetting that he would dismiss my thoughts, as well as dismiss my own observations. I explained that there was a lot about me he did not know, but he insisted that his view was correct. I was so upset I could not stop crying. But that experience did not stop me from pushing what I felt was the truth about myself, even though I was sad not to have his support.

My boyfriend has been very supportive. We talk about it all the time. I can see how my autism has affected our relationship, and how the diagnosis and knowing about autism will improve how we relate to each other--it already has.

As for my kids, my oldest said he knew students who had it and he did not think I had it because I was not like them. But it's different now that it's not just my own suspicions, as I have a professional diagnosis. For me, I know that it's my kids who I most want to explore what autism has meant in our lives, as well as what my autism has meant for them, and will mean for them. I think it may help them understand some things, but I also think that we need support services so they can understand this and better deal with it. In this sense I feel very different from a lot of women I have read about. It seems that women and men my age who get diagnosed often do so because they have a child who is diagnosed first. Discussion of autism is already in the family in many adult cases. In my case it wasn't, so I have the challenge of being the person who introduces this concept to my children. And it may seem like it's coming out of nowhere. It's daunting, but also promising - I feel like this can really help us in ways not found in the past because we were solving the wrong problems.

Elesia: In many communities, autism and disability are stigmatized. As an American-Dominican, do you feel autism is a stigma or taboo in your culture? If so, why?

Isabel: I don't think there is much understanding of autism, and of what the spectrum is. I certainly did not have that understanding until recently. I don't know if it's a taboo. I don't feel it that way. I feel that it would be much easier to talk about autism in my Dominican family than it is to talk about sexuality or divorce or religious alternatives, for example. My family is huge - I have 73 first cousins, and there are many 3rd, 4th, etc. I think there is a lot of variety and in many ways a lot of acceptance of difference. I have a cousin who has a daughter with developmental delays. I'm not that close to him so I don't know all the details, but for all I know it's probably autism. He and his wife have structured their lives around meeting their child's needs. They moved to Boston to be near specialists. This was a very difficult move for them because they are now far from the extended family. I visited them a few years ago before I knew anything about autism. Everyone treats their daughter with so much love and affection. In my family children are precious no matter what.

There are aspects of my own autism that garnered praise in my family. When I was a child, I was often complimented for my ability to sit still, quietly. For me it was natural, as I was often in my own world. It was easy to sit still at church or at a medical clinic. I remember one time I was picked to be an angel in a church event. They dressed me up in a silvery costume with silver wings. Everyone kept saying I was the perfect angel because I was so still. Another thing that earned praise and attention was my ability to read, memorize, and figure out visual things like maps and charts. People exclaimed things like, "¡Esta niña es una Biblia!" ("This girl is a Bible!") So when I recently read about autism and Aspergers and the "little professor" syndrome, I totally related. I probably cried reading about that because it was so close to my experience.

Elesia: Have you ever felt misunderstood by family members or friends who expect you to behave in certain ways?

Isabel: Yes, yes, yes! In particular, people did not understand why I liked to be alone. I'll never forget the day one of my aunts confronted me with the question: "A tí te gusta estar sola, ¿no es verdad?" ("You like to be alone, don't you?") I felt cornered, exposed, and ashamed because I liked something that was so seemingly horrible. Until recently, I attributed this difference to culture. I thought the fact I liked to be alone was a result of having grown up in the United States where people are almost obsessed with themselves and always seem to want their own space, as opposed to Dominicans.

Another thing that was criticized in my family when I was a girl and a teenager was the fact that I liked to read so much. I was always reading. I would bring books to the dinner table if I could get away with it. But this was a habit that worried some people in my family. Aunts would tell me it was not healthy to be reading so much. When I was a teenager in high school and college, a lot of family thought I was rude because I was not overly friendly. And in high school a lot of the girls thought I was a snob. I felt confused and hurt by this in both cases because it seemed so removed from my inner reality. I had to learn so much – teach myself so many things about how to behave so I would not get that reaction. And yet, to some extent, I still get that reaction despite having worked on this so much.

Being bicultural gave an alternate explanation for a lot of my problems "fitting in." If I didn't fit in with my Dominican family, it was supposedly cultural. If I didn't fit in with my New England white co-workers, it was also supposedly cultural. But after I discovered autism, it made much more sense why I have never fit in anywhere.

Some of the aspects of Dominican culture that might have made my autism more hidden (when in the context of the dominant US culture) are things like interrupting conversations, blurting things out, being too honest, and talking too loudly or too softly. For example, I exhibit all these things at work, and they always made me stand out in that context, but not among Dominicans.

Elesia: What has been most frustrating to you in regards to how you might be perceived by others who share the same cultural heritage (do you feel you have to cover up, hide, or overcompensate for being on the spectrum)?

Isabel: I don't live among a lot of Dominican people anymore, so it's hard to answer. I think in both my cultures it was frustrating to be misunderstood. It's frustrating to have people put expectations on me based on how they think and perceive the world and to assume that I perceive the world the same way. Because I have been successful in academics and work, people expect more of me. Parenting has been very challenging for me and it's been very hard to always have people say, "Why don't you just..." or "How could you let.." People expect me to be a certain way or assume that because I have a certain outward appearance that certain other things should be easy or be common sense. It's frustrating that what is common sense to some is very hard for me and really needs to be broken down in ways other people I know cannot seem to fathom. I guess my sense is just not common.

Elesia: Do you know anyone else of color, on the spectrum, who has also expressed similar cultural struggles?

Isabel: No, only the people I have read about on your blog and maybe a few other blogs. But I have seen very little even in blogs about people of color. Most autistic blog writers seem to be white. I would love to read more from people of color on the spectrum, especially adults and people my age.

Elesia: In general, do you feel a healthy percentage of Dominican parents are likely to look into further diagnostic testing if either they or others (e.g teachers) notice non-standard development in a child?

Isabel: The kind of behaviors I had I'm not sure would cause either Dominicans or non-Dominicans to seek diagnosis--even today. I wasn't a disturbance to anyone. I wasn't a problem. Adults loved me. Teachers loved me. I was often set up as a "model," which made me uncomfortable. I don't think the field of diagnosis and diagnostic follow up has caught up with kids who are similar to what I was like. Other autistic individuals are likely to be treated differently, especially if they are more easily identifiable. But even there, I think because of economics, Dominican parents would not have the resources to get the kinds of diagnoses that whites can get for their children. I think the differences from the "standard" would have to be more severe for Dominicans to get help. Based on what I'm reading on parental blogs, the kind of intense help and attention that autism spectrum kids are getting is probably not fully available to Dominicans.

Elesia: Do you feel accepted and understood by the Autistic community regardless of your cultural heritage?

Isabel: It seems like in some ways being autistic itself is a kind of culture. I feel I have so much in common with people in this community, that I can't help but feel identified. When I received a diagnosis, I emailed Rachel Cohen-Rottenberg to let her know and to thank her. She asked if she could post my response on her blog and I got a lot of nice welcoming messages. On the other hand, I feel that a lot of people in this community have limited cultural perspective in general and sometimes I wonder if some of the things that are assumed to be true of all or most autistics might really be more indicative of European-heritage autistics.

World Autism Interviews: Kassiane Sibley/Pacific Northwest

2011-01-10T12:52:00.000-08:00

Wowee zowee, look at Kassiane rocking some radical gymnastics up there. I'd give her a 10, but I can't quite see the percentage of extension on the back foot with the blur and all. Can I get a replay...?

Kassiane Sibley is a vintage 1982 autistic woman who lives in the Pacific Northwest. She has spoken at conferences across the western hemisphere and is active in Autistic and neurodiversity advocacy. Kassiane "writes when she feels like it" at Radical Neurodivergence, has contributed to Ask And Tell, and has written numerous articles, as well as participated in several interviews. In addition to gymnastics and advocacy, she enjoys swing dancing, other dancing styles, tabletop role playing games, and neuropharmacology.

Elesia: When did you first develop an interest in gymnastics, and how long have you been a gymnast?

Kassiane: My mom put me in a tumbling class when I was about 5, but I wasn't immediately successful so she yanked me out. I continued to teach myself cartwheels, walkovers, and handsprings in the yard and started classes again several years later. I consider myself to have been a gymnast for about 20 years now.

Elesia: Did gymnastics come easily to you? If not, please explain how you accommodated or overcame any struggles.

Kassiane: Hahaha, NO. Oh my gosh, no. I needed very patient coaches who were willing to work around skills, present them in different ways, trick my brain into not over-thinking things so my body could do what it knew. I competed in several events (occasionally in earplugs), and learned skills in a kind of screwed up order. Also, I was at very different levels for different events. But hard work, that I could do, and I did.

Elesia: What are your favorite and least favorite gymnastics events?

Kassiane: I have done both trampoline and tumbling--it is what it sounds like--and artistic gymnastics, which is what you see in the Olympics. My favorite in T&T (Tumbling & Trampoline) was tumbling, followed closely by double mini, which involves a smaller trampoline. I'm atrocious, simply AWFUL, at trampoline. I like to bounce but never could put all the skills together for an impressive routine. In artistic, I loved floor, and liked training beam, but had a tough time competing it. My bars were simply tragic and frustrating.

As a coach, I love teaching tumbling to my T&Ters, and I actually really like teaching bars. I've got a very technical brain that really groks nuance and the biomechanics, so teaching bars is nowhere near as hard as DOING bars!

Elesia: Tell us about a gymnastics accomplishment that makes you proud to this day.

Kassiane: When I was 19 or so, I won the Amanda Howe Memorial Sunshine & Sportsmanship award. It's an award to recognize athletes who work hard, have a good attitude, and are good role models, even if they aren't at the very top of their sport. That means way more to me than being recognized for having the best physical abilities, because flips are temporary but being worth looking up to is forever.

Elesia: What are your current goals as a gymnast? Do you feel there is an age limit to how long a gymnast can train and enjoy gymnastics, even if they are no longer competing?

Kassiane: As you know, I haven't competed in years and it's unlikely that I will again. I'm thinking about doing a T&T meet for fun at a level much lower than I used to do, but that's just an idle daydream right now. I mostly want to stay flexible and still be able to do a back tuck and an aerial cartwheel in a few years. I also hope to use the skills and body awareness to learn some of the throws in swing dancing.

I don't believe in too old. If you are enjoying it, you are exactly the right age. Elite is not the be all and end all of gymnastics, and the attitude that it is is what leads to people thinking they're too old. But if someone enjoys it, they can learn skills and get strong at all ages.

Elesia: You're a gymnastics coach and instructor, and part of your job involves working with autistic children. How do you approach instructing kids on the spectrum? Are there any common accommodations?

Kassiane: I teach all my students as individuals. That helps more than one would think. We do a lot of reinforcing what a position means and that it always means that (like a tuck is in a ball with your knees to your belly button) no matter what you are doing-jumping, flipping, or just sitting. Then the position is automatic, even if the rest of the skill isn't. I do a lot of demonstration for the visual learners, and I break down things really far for the kids who need it. Like, we have had kids who do not know how to jump off 2 feet, and we spent about 45 minutes just practicing that once.

I also try to make sure they always know what's going to happen (like, "We are going to stretch, go to tumbletrak, then trampoline, and then get strong!) so that there isn't as much anxiety over the future. I'm willing to make a visual schedule but no one has needed that yet. And I try to make sure they know what I liked about skills, not just what needs work. Or if a kid just needs to be mad at me, whatever, I can deal with that. Getting in a power struggle over it is silly.

Elesia: Some people think that autistic people are too clumsy or uncoordinated to ever master a sport like gymnastics. What is your response?

Kassiane: A no handed cartwheel *grin*. This comes back to elite not being the be all and end all. This whole idea of Don't Do Something If You Can't Be The Best is really detrimental. An autistic person may not ever get good enough to go to the Olympics, but you know what? Neither do most gymnasts. And that's ok. The physical and mental benefits come to everyone, not just the best of the best of the best. There's so much about gymnastics that is SO GOOD for us, whether we can do a somersault or a double back.

Elesia: Is there anything I haven't asked that you would like to share?

Kassiane: I love talking about the benefits of gymnastics. There's the physical, like strength, flexibility (fun fact: most gymnasts need to WORK for splits), ease of movement, and posture. There's the character traits, like confidence, perseverance, setting and achieving goals, sportsmanship, being part of a team...confidence in particular is systemically destroyed in a lot of autistic people. And there's the whole "I can do something that less than 1% of the world can do" peer-recognized skill, and the proprioceptive and vestibular input are unmatched. If you can walk on your hands, you can get good pressure to your upper extremities wherever you go.

Oh, and being able to learn new sports and movement patterns faster than all other athletes, that's pretty rad too...

Further reading:

Clay Marzo's official website (surfer who happens to be on the spectrum)

Jason McElwain (high school basketball)

Autism Women's Network (AWN)

2011-01-10T12:51:00.000-08:00

Check out AWN's new Editorial Coordinator: Elesia Ashkenazy (me!) I look forward to assisting AWN with providing quality information, in addition to researching, writing, and editing new material. I'm enthusiastic about engaging readers with community news and tidbits, interviews, musings, and much more. My first post will go up Friday, 14 January 2011. See you there! And just in case you're wondering, yes, I'll still be posting on Aspitude monthly.

Happy New Year!

2011-01-01T14:46:00.000-08:00

Best wishes for an awesome, peaceful, and prosperous 2011!

Autistics Speaking Day 2010

2010-11-02T17:06:00.000-07:00


Ari Ne'eman and me at SABE's 2010 National Self Advocacy Conference

The past month has been busy for me on the advocacy front. I attended the 2010 SABE Conference in Kansas City, Missouri. While at the conference, representatives from organizations such as Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) interviewed hundreds of people with disabilities on the subject of institutions. And boy did they have a lot to say.

Though the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act (ADA), and other legislative acts, decisions, and rules exist to serve people with disabilities, reality shows that many individuals who receive home and community based assistance do not experience genuine community environments or lifestyles.

When I interviewed conference attendees about what they think of when they hear the word community, I received responses such as: access, choices, equality, inclusion, people making contributions, living and working, and a place where you are allowed to come and go as you please.

When I asked interviewees to describe what they think of upon hearing the word institution, I received responses such as: bad, bossed around, disrespected, electric shock, forgotten, jail, lonely, limited choices, never visited, rejected, sad, segregation, and unworthy.

When I asked interviewees (a percentage of whom live in group homes or institutions) to share what they wish they could change about their lives, I received statements such as:

"I wish I could touch my own food first--before someone else does--and prepare what I want to eat for once in my life."
"I wish I had the freedom to fail. I wish I could make my own decisions, even if they are not always right."
"I wish I had a job that really means something to me."
"I wish I could get married and have children."
"I wish I could make mistakes without having the people in charge take my checkbook away from me as punishment."
"I wish I could come and go as I pleased."
"I wish I could choose my own friends."
"I wish my friends could come visit me whenever I ask them to come visit me."
"I wish people understood that people with disabilities can be of help and support to others. Just because someone uses a wheelchair, or just because someone might need help with toileting, does not mean that person cannot be of support to someone else."
"I wish I had real friends; friends that are not paid to be with me. I appreciate my support person, but they are paid to be my friend."
"I wish I could decide when I want to use the telephone. I have to ask permission like I am a baby or something."
"I wish I could have an iPod."
"I wish my group home did not have a sign on it. I think it scares people away. They see that and they keep on walking. They don't stop to chat like they do with our neighbors. I wish someone would stop and chat with me if they see me. I am different, but I don't bite."

The information we collected from interviewees will be shared with policymakers. After reading what we pooled and presented, I don't see how policymakers cannot be swayed in favor of closing down institutions and integrating people with disabilities into society. After all, it's the right thing to do. Community integration should be available to all people with disabilities regardless of where they live. And any standards applied must reach all community-based services and settings.

Kansas City wasn't my only stop. Dora Raymaker and I just returned from the Primary Care Research for People with Intellectual and Developmental Disabilities Workshop in Hershey, Pennsylvania.

After scampering back and forth through our connected rooms with big eyes and utter delight, holding hands and jumping up and down in our plush Hershey Hotel robes, admiring our chocolate-scented bubble bath solutions, ordering room service, (and--ahem--running round the outdoor flower gardens and ponds using false British accents pretending we were firing this gardener and that gardener--off with their heads!) we put on our professional hats to speak about Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Our presentation encompassed Community Based Participatory Research and how AASPIRE has employed this approach in its Healthcare study. Here's an excerpt from what I shared when it came time to explain how I felt as a community member being part of CBPR:

"At first, I found our internal emails to be too convoluted with scientific jargon to make any sense of them. I panicked thinking about how I was in deep water if my university degree and work experience combined was not enough to help me stay afloat in the world of CBPR. I possessed no inner resources to pull from in order to decipher the emails. Feeling shamefaced and unworthy, I dove under the table, knees shaking, nails bitten down. A week later, I peeked up from beneath the table and noticed the Principal Investigators of AASPIRE had emailed to ask how I was doing. I swallowed the lump in my throat and took this as a cue to come clean and explain I was an imposter, and that they should fire me and relegate me to the fringes of society where I belong. "No, no, no!" they said. "This is CBPR! We need you! We really need you."

When I heard the sincerity in their voices, I knew what I had to do: I had to confront them about their jargon. I had to confront them about the convoluted scientific email structures that made no sense to me. And to make a long story short, my suggestions ended up revolutionizing the way AASPIRE continued with the CBPR process."

In summary, the emails are now broken down and delivered in a format using the caps below with the answers plugged in beneath each one:

WHY AM I RECEIVING THIS EMAIL (PURPOSE)?
WHAT AM I EXPECTED TO DO IN THIS EMAIL (ACTION/S)?
WHEN DO I NEED TO RESPOND (DEADLINE)?
BACKGROUND/INFORMATION
HOW AND WHO TO PROVIDE A RESPONSE TO

CBPR acknowledges the communities it works with as a unit of identity (something an individual *belongs* to), and builds upon strengths and resources of community stakeholders. It facilitates collaborative equitable partnership--never tokenship--in all phases of research. It encourages co-learning and capacity building among all partners, as well as focuses on community relevance of all research. The community itself defines relevance of the research, and the research conducted benefits the community and the researchers. For further information about CBPR, click here.

The catalyst for the development of CBPR was to address and solve the issues minorities faced in research. Many researchers tend to connect minorities in research with ethnic and racial minorities. However, the Autistic community is also a valid minority. Autistics are a small group facing challenges such as discrimination, marginalization, mistreatment in research, and underrepresentation. Having our own Autistic culture, language that belongs to our community [I am not a fan of this term, but for the sake of example, "Aspie"], social spaces, and events such as Autistic Pride Day and Autistics Speaking Day defines us as a legitimate community. To learn more, check out Jim Sinclair's description by reading about the History of Autism Network International.

In his work, Phil Schwarz has pointed out that members of the Autistic community, like members of the GLBT community, can be born into families who have no other autistic members. Family members who do not identify with the Autistic community may be at odds with the wishes of the Autistic community by taking part in advocating for cures, or pushing for normalization of individuals on the spectrum. CBPR gives the Autistic community a direct platform for dictating research agendas that are in line with the community's culture, goals, and values. Nothing About Us Without Us! CBPR gives the Autistic community a chance to have a say in research and science about us. It's designed to ensure that all research is beneficial to both the community and researchers. And, most importantly, CBPR is designed to give something positive and useful back to the community's it targets for research (e.g. it is not positive and useful for researchers to claim we have no imagination without consulting, as the the contrary is true). CBPR facilitates the very idea of Autistics Speaking.

Autistics are asking for acceptance, accommodations, equal civil rights, and services to help ALL individuals on the autistic spectrum in the here and now.

There's a lot of work to be done in the world of disability rights and self advocacy. It is my pleasure to work alongside those involved in this endeavor. It's time to end discrimination and segregation against disabled people. Happy belated Autistics Speaking Day.

Further resources (warning: these videos contain disturbing footage from institutions):

Video Suffer the Little Children

Willowbrook: The Last Great Disgrace

World Autism Interviews: Aspie Teacher/Pennsylvania

2010-10-24T18:24:00.000-07:00

Aspie Teacher is a woman diagnosed with Aspergers and wife of what she coins a "spectrumy" husband. She has a Bachelor's degree in Psychology and a Masters in Education. Aspie Teacher is a Community Outreach Director for the Autism Women's Network. Check out her blog, Aspie Teacher. She is passionate about sensory solutions and making the world sensory-friendly because she has several conditions that affect her sensory processing. In her free time she enjoys categorizing dog breeds and cooking.

Elesia: In many communities, autism and disability are stigmatized. Do you feel autism is a stigma or taboo subject in Korean culture? If so, why?

Aspie Teacher: Autism definitely carries a stigma in Korean culture. The culture emphasizes conformity, so there's no place in the culture for anyone who is perceived as different. But it's not enough to be like everyone else; parents are obsessed with their child being the best. Everything an individual does is believed to reflect on their family, so if a child is perceived as weak or flawed in any way it would cause shame for the whole family, especially the mother who made raising that child her entire world.

Many Koreans think nothing of using hurtful slurs to describe anyone different. I've grown up hearing "animal" and the R-word being thrown around to refer to myself and others on the spectrum. That's what they say if they talk about it at all. It's seriously easier for families to withdraw from society than to risk hearing reactions like that.

Elesia: What has been most frustrating to you in regards to how you might be perceived by other Koreans?

Aspie Teacher: Despite having grown up immersed in Korean-American society, I've always struggled to grasp and adhere to the culture's social rules. Because I don't do what's expected of me (such as following the crowd and trying hard to please people), I'm generally seen as too "independent" or just plain bizarre. (And despite what many people think, a fair amount of eye contact is expected in Asian cultures. I feel they can tell right away if someone is "off.")

I've been in situations where because I didn't say the right things or react with the right social graces, other Koreans told me I didn't act Korean enough, or specifically, not enough like a Korean girl should. It was really more about my being a girl with an ASD and thus not knowing the subtleties of socially appropriate behavior, but the culture tends to describe unacceptable behavior as "acting white" because they have no other frame of reference. Like forgetting to say hello and goodbye has anything to do with race!

The irony is that when non-Asian people don't understand anything about me (such as when I pause before responding because of my auditory processing disorder or if I make a social mistake), they attribute it to my Asian heritage. When you're non-white, people automatically assume race explains individual differences.

Elesia: Do you feel like you have to cover up, hide, or overcompensate for being on the spectrum around other Asians or Koreans? If so, how does this make you feel?

Aspie Teacher: When I was younger, I felt like even if I was giving 500%, it was painfully obvious I was always the person falling over my own feet socially and physically in any group of Koreans. Eventually, I started using a weird fake voice when speaking Korean, except I wasn't aware of it until someone I knew well pointed it out to me. And then I realized that I wanted so badly to fit in that I was overcompensating.

At some point it hit me that there was nothing I could do to cover up my autistic traits in order to fit in with other Asians. That was when I learned I could just be happy celebrating Korean heritage in my own life and that culture didn't have to mean fitting into some clique. I don't have to put on "the act" anymore, but that doesn't make me any less Korean.

Elesia: Do you know of anyone else who is Asian and also has a diagnosis of ASD? If so, have they expressed any of the same cultural struggles as you?

Aspie Teacher: Yes, and the most commonly expressed concern is not being able to talk about their experiences openly within the culture. They mention feeling alone and misunderstood within the culture. Not everyone who is Asian with ASD mentions feeling completely excluded from the culture, however.

Elesia: In general, do you feel most Korean parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice non-standard development?

Aspie Teacher: While it's changing among some more informed parents, there are still plenty of Asian parents who refuse testing despite strong suspicions that their child has a developmental disorder. They'll even secretly admit that the child needs help yet refuse testing because they don't want the label to stigmatize their family. Beyond that, many parents will choose to focus on potential giftedness (if it exists) because that's all they want to see. And then they hope that any developmental or social skills issues will disappear or be overshadowed by achievement.

I've also noticed teachers failing to identify Asian students with potential ASDs. Teachers tend to stereotype Asian students as quiet and antisocial so they dismiss possible autistic traits as cultural differences. And because many Asian parents are hesitant to challenge authority and less likely to have accurate information within the community, they're less likely to speak up about testing if they have any suspicions and a teacher or doctor does not mention it.

Elesia: Do you feel accepted and understood by the Autistic community, regardless of your cultural background?

Aspie Teacher: Race and cultural background haven't been obstacles to being accepted or understood by the Autistic community, although sometimes I wish I knew more people who've been through similar experiences with both autism and race.

World Autism Interviews: Socialworks/Toronto, Ontario

2010-10-17T10:21:00.000-07:00

Socialworks is a single mother of one child. She has a Bachelor's in Social Work with a minor in Public Administration, as well as a Master's in Social Work. She spends her time in community advocacy, namely accommodations and housing education. Socialworks is the Organizer for the Toronto Autistic Adult Network self-advocacy group, which started up in 2009. She enjoys cars, chess, home renovation projects, listening to all kinds of music, mechanics, and soccer. She's also a Star Trek fan (except for the most recent series).

Elesia: How old were you when you received a diagnosis, and how did your family respond to the news?

Socialworks: I was 29 years old when I received a diagnosis. I was treated for depression and anxiety, and after being put through a bunch of medications that did more harm than good, I was assessed as having bipolar disorder. I did nothing with the diagnosis because it meant nothing to me. I was unable to see the mood swings that were supposedly evident in my vague generalizable answers. When I joined a local bipolar group and heard the stories and difficulties people lived with, it was then I knew I was not bipolar.

After having a 'meltdown' that landed me in the hospital, it was almost impossible to get professionals to listen to me because I was a "person with bipolar disorder." When asked what I needed at the hospital, I mentioned that I could not go home. They never asked me why. They didn't ask what I was reacting to. I was simply "bipolar."

I was put on medications again. But my routine was interrupted when the pharmacy fixed an error in the dosage and didn't tell me. I was functioning at a basic level, and with that medication change, I ended up in the hospital again a week later. I knew it was a medication switch, but no one was listening to me. In retrospect, I could have died because I was being given medications intended for individuals who are bipolar. Instead, I was autistic and didn't know.

Since I live alone, my family had no idea what was going on.

Months later, I decided to examine the root causes of my issues and the things I have difficulty with. I had to identify social norms and redefine the obstacles I was facing. It was then that I found my issues to be sensory related and went on to seek non-medicated ways of addressing the issues.

I was diagnosed during a three-session Cognitive Behavioural Therapy assessment for anxiety and depression.

Unfortunately, I had to struggle with the doctor to get the diagnosis because the doctor felt that labeling me wouldn't do much, and that there wasn't really much support for adults with Asperger's. I didn't care. I wanted the formal diagnosis so I could decide for myself what it was I wanted to do with it.

My family has been neutral about the issue. They have little to say and don't seem to be too interested in understanding. I don't think they believe me because I have been able to accomplish many things. Autism is apparent with other family members who either have persevered and have not experienced systemic difficulties that would force them to take a second look, or they live in environments where autism is never discussed.

I have also been bullied by relatives who don't understand Asperger's, and likely never will because I have chosen not to disclose to them for my own safety.

Elesia: In many communities, autism and disability are stigmatized. As an African-Canadian woman, do you feel autism is a stigma or taboo in your family? If so, why?

Socialworks: It is definitely considered taboo in African and West Indian-Canadian cultures. Many times, children with developmental disabilities are ignored, and when you are raised like that, 'coming out' to family is an uphill battle. Oftentimes, adults are mocked, ridiculed, or belittled. And the more we speak, the more familial disdain becomes apparent. You're not just outing yourself, you're also outing your family. There are few spaces to talk about disabilities in the African-Canadian community.

Although I have autistic members in my family, I wouldn't consider autism open for discussion. There are fears of labeling yourself or being labeled by others that, historically, we as a community have tried to get away from. It just is what it is...hidden.

Elesia: Have you ever felt misunderstood by family members or friends who expect you to behave in certain ways?

Socialworks: In my family, being seen as a strong individual has oftentimes made it difficult to be heard. Subjectivity plays a huge part in how my family understands my difficulties. I tend to keep it to myself instead of trying to get them to understand. I can speak, but speaking is not my first method of communication, as it is quite tiring. Add in the emotional piece that exists (even if you can't tell) and the whole experience can leave me unable to function afterward.

In regards to being misunderstood, I find that the old "You don't act autistic" attitude exists within my family. Sometimes my autism is hard to see. I've also focused a lot of energy over the years trying to fit in. I lived with a belief that such challenges (of fitting in) was a skill that would be beneficial to have as I moved forward. It got much harder as I got older.

My family doesn't see me when I not 'on' for the most part. They don't understand why I spend so much time at home alone, and why I don't react positively to spur of the moment invitations outside of the home, or to invitations to most social gatherings. My family never asks, and only recently did I know what was really going on myself. I grew up being called antisocial, selfish, narcissistic, "having emotional issues," strange, weird, etc.

My behaviour is what has been misunderstood for most of my life.

My family doesn't understand why I won't go certain places, why I can't work in certain spaces, why I'm a picky eater, why I feel cold most of the time, why I don't speak much in groups, why I carry all of my heavy grocery bags at once, why I go grocery shopping rarely--and only during the wee hours of the morning, why no one really visits me, why I've worn dark coloured clothing most of my life, why my walls are virtually bare, and why I seem to avoid most things others find appealing.

They do not understand, and I no longer see much of a benefit to them gaining an understanding. It's important to be understood to a degree, but it's more important to understand yourself. It is only then that you can decide for yourself who you want to be. Anything less (i.e. being defined by what other people tell you you are) tends to hurt the self-esteem.

Elesia: What has been most frustrating to you in regards to how you might be perceived by others who share the same cultural heritage (do you feel you have to cover up, hide, or overcompensate for being on the spectrum)?

Socialworks: I think the fact that attitudes and assumptions are the same, if not more, by others who share my cultural heritage. It is frustrating to try and share a part of your identity when doing so sometimes closes the doors to being seen as a human being, or "more than just [this or that]..."

I will say that I have been in various spaces where, based on discussions--which had little to do with ASD--it was clear that I was not in a safe place to be open about myself. Hostile discussions around gender roles, sexuality, race, cultures, education, and the reinforcement of linear thought around these issues have repeatedly told me that if I speak out on any of these topics, my social location alone would set me up for a battle I can't say I am always up to fight.

For the most part, I feel neutral about it all. The only times I get heated is when my apparent neutrality makes it difficult for others to believe me when I say I am experiencing some sort of emotional difficulty. Then I feel frustrated. It is then, and only then, that I wish I could better communicate my feelings so as to avoid the doubts of others.

Elesia: Do you know anyone else of color, on the spectrum, who has also expressed similar cultural struggles?

Socialworks: Yes, I have met other people of colour who have a diagnosis of ASD, and we share similar struggles. Our age differences, access to opportunities, and general life experience may play a role in how we internalize societal pressures to hide or fit in, but the issues are the same.

Elesia: In general, do you feel a healthy percentage of African-Canadian parents are likely to look into further diagnostic testing if either they or others (e.g teachers) notice non-standard development?

Socialworks: The scars of black children being labeled in the school system and streamed are still there, so many parents are hesitant to seek a formal diagnosis for their child, and when they decide to, service providers rarely approach assessments with a deeper understanding of the complexities around disability within culturally specific groups.

It can be tough for any parent to accept that their child could be having difficulties. I do not believe that more parents will look into further testing without community outreach. If parents seek services through the school, they have to keep in mind that schools are not necessarily eager to swallow the costs of assessments. In addition, once a child has been assessed, the school must take action. Add the fears of the parents, and the fears of the school being seen as labeling another black child and/or labeling too early in the child's development, and nothing meaningful really happens.

Elesia: Do you feel accepted and understood by the Autistic community, regardless of your cultural heritage?

Socialworks: I do know that I have not felt rejected by the Autistic community because of my cultural background. At the same time, I don't feel included. I see it has another dimension to the third person perspective I find myself in most of the time as an Autistic adult.

Elesia: Is there anything I have not asked, you would like to share?

Socialworks: The most frustrating thing is that people rarely ask why. If we begin to ask why, and if we value the lived experience of individual persons at least as much as we do those who perceive, we could dispel a lot of misconceptions. We need to take into account some of the cultural attitudes we have around autism and disabilities, as well as open up spaces for understanding and change. We need to help others fight for and access needed services in ways that protect the dignity of individuals, as well as their families and communities.

2010 ASAN - OHIO Protest Against Autism Speaks

2010-10-11T14:52:00.000-07:00

ASAN - OHIO had a successful protest against Autism Speaks in Columbus, Ohio at Ohio State University. The four-hour protest attracted media attention, in addition to independent reporters. Protesters raised the same points as other ASAN chapters:

Autism Speaks funnels only 4% percent of solicited monies back toward the families and communities it drains.
Autism Speaks fails to include autistic people--other than in token ways--in their decision-making.
Autism Speaks puts monies toward eugenics.

Autism Speaks' walkers addressed ASAN - OHIO protesters with:

"Autism Speaks can't have autistic leaders or board members because autistic people are incapable of making important decisions."
"Are you all stupid? You're all stupid!"
"Go home! You suck!"
"You're a bunch of idiots!"
"How do you sleep at night?"

ASAN - OHIO responded with slogans such as, "Nothing About Us Without Us!" "Autism Speaks needs to listen!" and "2, 4, 6, 8, Autism Speaks discriminates!"

State Representative, Ted Celeste, stopped by to listen to, as well as applaud ASAN - OHIO for their message. "You're all heroes," he commented.

Benzion, an autistic person in support of ASAN - OHIO, said, "Autism Speaks is focusing on curing autism...not being able to live with, not integrating autistics. Two years ago, I very naively came to Autism Speaks to walk for autism, until I learned I was a disease that needed to be cured."

To view footage of ASAN - OHIO's protest, click here. To view their blog, click here. To view the ABC news report, click here.

Yay, Terrariums!

2010-10-09T20:19:00.000-07:00

Once a month, my dear friend Dora and I make time for a play date. And not just some slop-shod-devil-may-care date. We compose an agenda and approve it before we get together (through trial and error, we have come to realize that our agenda must be created and emailed--by either one of us--at least two days before our rendezvous.) No agenda, no date.

Today's agenda:

Meet at Dora's house.
Drive to Blossoming Lotus for lunch.
Drive to Wonderful Terrarium Place in SE Portland.
Head back to Dora's house and gleefully take pictures of our terrariums in Dora's art studio, sit down and talk about our computers (Dora just got a new business Mac that Elesia is so very jealous of), and then talk about either our recent business trips or current writing projects until we run out of communication bandwidth.

Now, I'd like to know who's behind those myths out there that say autistics aren't capable of making friends.

World Autism Interviews: Mei Ye/Portland, Oregon

2010-10-05T17:02:00.000-07:00

Mei Ye is the mother of an autistic son, and the wife of a self-diagnosed autistic husband. She is trained in multiple engineering fields, and works as a system software engineer for the computer industry. Mei grew up in what she describes as the ascetic pre-industrial era of the 70s and 80s in China. She has spent most of her adulthood in the States as an observer and thinker.

Elesia: Autism is often stigmatized in American culture. Do you feel autism is a stigma or taboo in Chinese culture? If so, why?

Mei: Yes, Most Chinese have little knowledge of autism. They most likely consider it as a mental disorder. Family pride is deep-rooted in Chinese culture.

Elesia: Have you ever felt misunderstood by family members or friends who expect your son to behave in a specific (or traditional) way?

Mei: Yes. Years ago, a Chinese woman scolded my son--who was then four years old--for not sharing with her two-year-old at a party.

Elesia: How did this make you feel?

Mei: I forgave her ignorance. I discussed autism with her. She is an understanding person. Years later, I heard that her son was diagnosed with autism too. The rate of autism occurrence is indeed astonishing.

Elesia: Is there anything that frustrates you in regards to how your son might be perceived by other Chinese people?

Mei: I am a person who does not care about other people's perceptions. I have jumped many hurdles in my life. I am always learning, thinking, and looking for my spiritual and intellectual allies.

Elesia: Does anyone else in your family have a diagnosis of Autism Spectrum Condition? If so, have they expressed similar cultural struggles?

Mei: My cousin in China observed autistic behaviors in her two-year-old. Her family is in dismay and denial. There are very few specialists in China who can diagnose autism.

Elesia: In general, do you feel most Chinese parents are likely to look into further diagnostic testing if either they or others (e.g. teachers, relatives) notice atypical development in their child?

Mei: Chinese care deeply about the wellness of their offspring. Chinese people are good followers. If one of their respected relatives or friends sets a good example, they will follow. So it is very important for families like mine to be open and honest on this issue.

Elesia: Is there anything else you would like to share?

Mei: I am passionate in finding the best education model to grow and harvest the giftedness part of autism.

Survey News

2010-10-05T10:11:00.000-07:00

Got an extra 15 - 20 minutes? The survey posted below received full ethical approval from the Institutional Review Board and contains consents. It examines the relationship between the autism spectrum and Internet use, identity (including language use and neurodiversity), and visual perception. Scores are completely anonymous, and it's for any adult--or child of at least 7 years in age--who is diagnosed on, and/OR who self-identifies as on, the autism spectrum. Participants may receive help if needed.

Click here to reach the survey.

Steven Kapp
PhD student, Psychological Studies in Education
UCLA Graduate School of Education & Information Studies
Co-Director, Autistic Self Advocacy Network - UCLA/LA Area

2010 ASAN-PDX Protest Against Autism Speaks

2010-09-29T17:59:00.000-07:00

[A special thank you to Kassiane Sibley, who led the protest in my absence, as I was at the Self Advocates Becoming Empowered (SABE) conference in Kansas City. Founded in 1990, SABE works for the full inclusion of people with developmental disabilities throughout the States.]

Autistic Self Advocacy Network (ASAN) aims to advance the principles of the disability rights movement, as well as to ensure equal access, opportunities, and rights in society for individuals on the autistic spectrum. The 2010 ASAN-PDX protest against Autism Speaks in Portland, Oregon comes on the heels of larger advocacy efforts being undertaken by Autistic people and cross-disability allies throughout the nation. In addition to the Portland protest, further protests are being organized for Saturday, October 23 in Dallas/Fort Worth, as well as Saturday, November 6 in Washington, D.C.

ASAN-PDX asserts that Autistic adults will not be bullied, and that they will raise their voices. If Autism Speaks is to continue speaking for autistic individuals, they must include them in their leadership, and not only in token ways. They have zero Board members who are on the spectrum. And it is unfortunate that only one autistic is in an advisory position with their organization. Allowing only one autistic person in an upper-level position is simply another form of exclusion. Autism Speaks solicits monies from communities and puts little back in. Only four cents of every dollar goes toward services to help autistic people in the here and now.

"I share ASAN's concerns around the use of biomedical research to eradicate autism," says Dominic Le Fave in a blog post which includes a photo of the protest, "...the eugenic potential of genetics research is something that has already outstripped the capacity of our current ethics." To read more, click here.

When Wired.com asked ASAN President, Ari Ne'eman, what non-autistic people can do to become effective allies of the Autistic community, Ne'eman replied: At the political level, watch where your money is going. There are a lot of well-meaning people who think they're helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities, and ask tough questions like, "Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?" To catch the full article, click here.

The actions of ASAN-PDX supporters were met with a measure of glares and hostility from some Autism Speaks proponents, a percentage of whom resorted to verbal attacks during the protest. Autism Speaks' booing of ASAN-PDX supporters ceased when Jim Sinclair's Don't Mourn For Us was recited in a dramatic reading. People began to ask for copies of the article, and some tension ceased.

To the Autism Speaks hecklers who yelled, "You aren't a parent, you have no right to say that," take note that three of ASAN's Board members, as well as several ASAN supporters are Autistic individuals who also happen to be parents of autistic children. And those who uttered such statements as, "This is why we need a cure," and "You aren't really autistic," please refer to A Handbook for Disempowering Advocates. When your autistic children grow up and decide to become self-advocates themselves, will you seek to disempower them too?

Now, not all of the Autism Speaks proponents responded to ASAN-PDX negatively. To the few Autism Speaks allies who brought cookies and water bottles to protesting ASAN-PDXers, thank you. Thank you.

Last year's local protest coverage:

ASAN's Elesia Ashkenazy Interviewed

Protest Against Autism Speaks

World Autism Interviews: Susan Golubock/Arizona

2010-09-14T10:10:00.000-07:00

Sue lives in Sun Lakes, Arizona. In addition to providing consult services to adults on the spectrum, and to parents of autistic children, she presents at conferences through her business, Making Sense of Autism. She has been an active participant at Autreat for the past ten years and is in hopes of launching a similar autistic conference/retreat program on the west side of the States. For relaxation, Sue plays tennis, and has recently joined a Mah Jongg group (stating that it's easier to socialize with a game to focus on). She is a Star Trek The Original Series fan who also enjoys books about forensic science.

Elesia: Employment issues are a huge topic in the Autistic community. As a mature adult on the spectrum, please share your experiences in the work force.

Sue: For me, burnout started in my 40s, almost 10 years prior to my self-discovery and diagnosis. I was a school-based occupational therapist. I championed getting out of the medical model of pull-out services and getting into the functional environment (the classroom) to work with students. Unfortunately, I worked myself out of a job. I discovered I couldn't function in other people's environments. I went back for a master's degree in assistive technology, thinking this would get me into an environment I could handle--a computer environment. I cut back to part-time employment to handle working on my degree.

When I finished, I accepted a part-time position at a university, thinking the small class size and quiet of a university setting would work for me. It was then I self-discovered why I was struggling so much with employment despite my years of previous success in my field. I started "coming out" to a therapist who worked with autistic children. At this time, my well-hidden--due to vigilance--autism-related characteristics started coming out. And I ended up losing my job without really understanding what happened until much later when I went back into school-based practice (this time asking for places where I could "escape" in the schools, though I phrased it as needing places to assess students and write reports). Later in life, I left school-based practice and ended up in clinic-based practice where I was guaranteed my own space.

Elesia: When you received a diagnosis, did you choose to share it with others?

Sue: I outed myself to anyone and everyone who would listen. I was desperate to learn what it is I did not know about other people, but was pretending to know so I could fit in. There was no way to ask people without disclosing my status on the spectrum.

Elesia: How did revealing your diagnosis affect you at work?

Sue: I focused my work on autistic clients. For a time, this combination of private practice in an autistic setting helped to keep me working full-time. By my mid-50s, I could no longer handle the pace and demands of full-time work. I dropped back my hours to less than 20 per week.

Every few years, I've redefined what I am willing and able to do (fortunately, I have a supportive boss) in order to find my remaining niche in my profession.

Elesia: You are still working now. Has anything changed? Do you have new struggles to face?

Sue: I'm now 64 and have reached another crisis, as I cannot deal with the energy and time demands of creating written reports, even though what I produce is excellent! Despite my constant effort to find a more efficient method, it just takes so long to convert what I know into words. I'm justified in retiring, but there is much more I still want to do. But I can no longer work in conventional ways. I've also found I no longer have the energy to keep up the image my husband, family, and friends have of me as a person who remains emotionally calm and able to handle life's little bumps (despite sharing my diagnosis with them). Interestingly, with each "letting go" of the person I never was, I am enjoying the person I am as I discover the pleasures of living life rather than just surviving it.

Elesia: Do you have advice for younger people on the spectrum who are entering the work force?

Sue: You are doing yourself and those who live and work with you a disservice by constantly working to compensate for the person you are by trying to "fit in." The energy required is neither recognized nor appreciated by others who assume you are Doing Your Best Without Knocking Yourself Out (like many people). As you get older, it only gets harder, and you'll find you are missing enjoying the pleasures in life. I gave up a lot to achieve what I have. And I would do anything to have back the enjoyment I felt in those years when I was a child and I was being the person I was born to be.

World Autism Interviews: Rachel Cohen-Rottenberg/ Vermont

2010-09-11T10:21:00.000-07:00

Rachel Cohen-Rottenberg publishes the blog, Journeys with Autism. She is a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).

At the age of 50, she awoke to her place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. Her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurdiversity section of the ASAN website.

Elesia: You have a unique perspective to add to the employment arena in regards to people on the autistic spectrum.

Rachel: My main thoughts on employment issues come from the perspective of being a middle-aged autistic. Something significant and disheartening happens here in mid-life. A lot of us who were employed for many years, who didn't know we were autistic, and who therefore went full steam ahead trying to be like everyone else now find ourselves in a quandary: unable to work at the level we used to, but with very good track records of jobs, marriage, and kids that make it difficult to get disability or any kind of accommodations. We also tend to find that we don't have the energy to "pass" anymore, and so finding any kind of job becomes even more difficult. I have a master's degree with over 20 years experience as a writer and editor, and I was at the top of my field when I quit in 2003, but I'm now having trouble finding part-time work in my local community.

Elesia: Are there other barriers to employment middle-aged autistic individuals may experience?

Rachel: For me, it seems to be equally a problem of not being able to do the work inside a crowded office and not being able to come in and just chat it up with people and make myself more visible as a potential employee. I know that I can assert my right to employment and reasonable accommodations, but part of the problem is limited energy; whatever energy I might use for actually working gets taken up with the struggles to explain the basics of disability rights. I used to fight through every kind of overload and injustice, but at the moment, I'm feeling quite tired out. And I say that as an extremely tenacious and strong-willed person who has always made my own way. It's just what happens over time to those of us who didn't know what we were dealing with. It's a very big problem. I hope the folks coming up, who know they're autistic, use that knowledge to take much better care of themselves.

I'm fortunate in that I'm financially secure and don't have to work. And yet, I miss work. I miss the collaboration of working with other people on projects. I miss being a part of something bigger than myself.

Elesia: Please share solutions to the work issues related above.

Rachel: For disabled people in general, I feel that the most important thing is to make employers aware that asking for accommodations is not asking for special treatment. We don't have special needs. We have the same needs as everyone else. We need love, food, shelter, work, community, and purpose. What differs is the mode of delivery. Most typically abled people don't realize that they receive assistance for the way they operate every day, because the world is set up to accommodate them. It's set up to accommodate them so completely that the accommodations are all but invisible. When people with atypical abilities ask for accommodations, we are simply asking that the world be designed with our abilities in mind as well. For example, because of my acute hearing and auditory processing issues, I can't work in a crowded office, so I need an employer ho can either give me quiet space to work or enable me to work at home. All too often, though, employers see that kind of request as a burden rather than an opportunity to get a talented person in the door.

For autistic people in particular, the single most important obstacle to be overcome, in my opinion, is the expectation that we are going to socialize like everyone else. I can talk with someone about subjects of mutual interest, about work-related projects, and about problems that need to be solved. However, I cannot schmooze. I cannot make small talk. I cannot be indirect. I cannot read body language. In other words, I cannot do social networking. Unfortunately, we autistics are judged by the social norms of the non-autistic world, and that often leaves us unable to compete.

When I talk about the fact that autistics socialize differently, many non-autistic people think that I am excusing rudeness, which is not at all the case. I don't believe it's an inevitable outcome of anyone's neurology to be rude. I believe in courtesy, in consideration, and in friendliness. They are sorely lacking among people in general in our society, and I do my best to put them in action. But courtesy, consideration, and friendliness only get us so far in the social arena of work, as any autistic person will tell you.

Elesia: What do you miss most about work?

Rachel: I miss the dignity of having work. I've always been good at creating work, and I always have any number of projects going, but it's really not the same as having the larger world include me and tell me that I still have something to offer. That's a very hard thing to lose, and I'm not sure that I can get it back.

This is the story of a lot of us in mid-life. I hear it regularly from other autistics my age. It's a big problem, and the only way to approach it seems to be self-advocacy, early and often.

Is Adaptation Bittersweet?

2010-08-28T17:13:00.000-07:00

I was recently asked, "Would you consider adaptation more difficult, and thus more exhausting, as an aspect of the social challenges of autism? Or is that something you would disagree with?"

Yes, I do often consider adaptation to be difficult and exhausting.

Imagine being relocated to an unknown planet. To gain the civility and respect of the inhabitants, you must adapt by submitting to strange painful shoes that alter your feet so you can walk on their terrain how they see fit. In addition to the shoes, the natives have decided they do not like the human quality of your voice, and so--to fit in better--you must use a voice modifying contraption. (Your voice is intelligible without the modifier, but it is viewed as atypical, ugly, and as something that must be corrected.)

The natives have decided lots of things for you, and they neither ask nor care for your input. They collect monies to open leading research centers to push for solutions for your kind. Scientists conduct studies without consulting you or your people. The natives talk about you without you. Even worse, they see to it you do not forget your human eyes fail to capture what their perfect ideal eyes do, and that though you can see, your eyes are deemed substandard and in need of a cure. If the natives are not discussing your defective eyes, then it is your appalling feet, your eccentric voice, or your odd human mannerisms and traits.

Your reward for adaptation and assimilation on this planet means the natives might hold you in higher esteem for making a conscious effort to submit to their conventions. Perhaps they are less likely to look upon you with eyes that scream: Inferior! Opportunities open up and life flows smoother, but only for a lucky few (mostly the token specimens of your kind).

Compliance will lead to consideration, tolerance, and understanding..."I'll keep trying," you tell yourself. But burnout is inevitable because, in spite of your best efforts, the natives still view you as in need of being fixed--or better yet, extinct. And they have no shame in discussing eugenics for your kind. Some go so far as to wish you would drown or be electrocuted by lightning.

You're offered anything from medications, surgeries, and treatment to quackery in order to transform you into an acceptable individual. You watch your people dragged off to asylums and institutions, or relegated to the fringes of society. And there's not a damn thing you can do about it but advocate and raise an army of like-minded individuals to reason with a body of native legislators and service providers who do not have the decency to treat your actions or words with respect. Dear Zaos, what you have to go through to gain an inch of consideration and equality! You search your mind for valid reasons to justify why the natives believe they reign supreme. What is this indispensable planet that dispenses! Is there any hope?

Resentment grows, and when you've had enough of putting up with native ways you find yourself interacting with them only when necessary.

At this point, what a relief it is for you to connect with your own kind. You are beyond joy to find an established community where you can be yourself without anxiety, fear, and ridicule. Concepts of civil rights and pro-diversity are music to your ears. As word spreads, some natives step forward and eagerly assist and support your community. But still, there are those who continue to make fun of you, kick you down, and demand conformity. Natives who deem themselves less barbaric and cruel simply ignore you because they do not understand you; a percentage admit to being too uncomfortable to interact with you. Can you blame them? After all, there are too few models to show them the way.

Adaptation is as difficult and exhausting as it is useful. It is often bittersweet. Home is where we make it, and it should be in our hearts. For some, the only home they have is their community.

The worst sin toward our fellow creatures is not to hate them, but to be indifferent to them: that's the essence of inhumanity. -George Bernard Shaw

Neurodiversity Tidbits That Make This Blogger Smile

2010-08-11T12:22:00.000-07:00

1. Mary and Max! It's a movie about a pen-pal friendship where neurodiversity themes are explored.

2. The National Autistic Society in the United Kingdom has these words on its home page: Accept difference. Not indifference.

3. The London School of Economics recently took action to hire a Neurodiversity Coordinator for their Disability & Well-being Office.

4. President Obama signed an executive order calling for an increase in federal employment of individuals with disabilities. Several disability-related organizations are banding together to ensure its success.

5. Snow Cake was released in 2006, but if you've yet to see it, put this one in your Netflix queue.

Autistic Pride Day, 18 June 2010

2010-06-18T20:09:00.000-07:00

Some supporters of Autistic Self Advocacy Network - Portland (ASAN - PDX) met at the Oregon Museum of Science and Industry, OMSI, for Autistic Pride Day. We wore our "posautive" tees.

Click here to see last year's APD post.

The Uncharted Path: My Journey with Late-Diagnosed Autism, by Rachel B. Cohen-Rottenberg

2010-06-16T11:03:00.000-07:00

In case you don't know this about me, I am an aspiring author (Young Adult paranormal fiction, short stories, and nonfiction) and so it pleases me greatly to compose this post--yay! What a treat!

Congratulations to my friend Rachel Cohen-Rottenberg on her memoir about life, love, struggle, and joy through the eyes of a woman awakening to her place on the autism spectrum!

It was an honor to review this novel (check out the back cover!) Here's what I had to say:

"The Uncharted Path is a journey that moves from lonely beginnings to a meaningful kinship found within the Autistic community. This book is an excellent example of how capable autistic people are at self-growth and acceptance. Readers will gain insight into the determination it takes to move from a three-year-old child's budding realization of the vast chasm of separation between the autistic self and the world to the adult realization of: It's me. It's just me. Rachel puts it well by stating that the key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. A place on my bookshelf has been earned by this memoir, as it is right up there with my personal favorites authored by individuals on the spectrum."

There were many times in reading Rachel's book that she struck a chord of recognition in my own life story. I especially liked how she described what it is like to always be functioning at emergency level (pre-diagnosis). When I look back, it's truly amazing that autistic people like us have survived. Emergency level is definitely not a daily state I ever want to enter again. It takes a strong sense of realization--in addition to an astute competent diagnostician--to move beyond wondering why you are different to knowing and accepting why you are different.

Rachel carries her point forward by writing clear and succinct. I will never forget this sentence: After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense.

This book also provides valuable insight into the things us autistic parents can do. I laughed aloud when Rachel shared her husband's response when, like all mothers, Rachel questions her adeptness: “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

This title will be available as of July 2010. To purchase a copy, click here (be advised that you will need to wait until July, which is just around the corner).

Be sure to check out Rachel's blog, Journeys with Autism.

(Love your book cover, Rachel! And I love you too!)

Related post:

Autistic Aspirations: Do We Have the Same Chances?

Cross-Disability Letter on Disability Health Disparities

2010-06-10T16:52:00.001-07:00

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of "Medically Underserved Populations" (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don't want to pay interpreters or "bother" with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, "eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities." Further, "[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care."

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft "A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions " by the HHS Working Group on Multiple Chronic Conditions" (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine "medically underserved populations," HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

World Autism Interviews: Me

2010-06-01T14:38:00.001-07:00

Two grad students from Ohio State University (who are Aspitude fans--yay!) asked if they could interview me for their literacy narrative project. I'm always up for an easy blog post, so I've decided to share my answers.

Students: What does "disability" mean to you?

Elesia: The Americans with Disabilities Act has a basic definition of disability: an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.

There are medical and social models of disability, which may be generalized as one being cure-focused and the other being inclusion-focused.

A lot can be said about the term disability. It is a word that conducts current.

Some people view disability as a negative while others view it as a positive. Disability has been defined many ways: as a way of life, as a burden, or as a gift. In my book, disability has the power to unite communities seeking equality, inclusion, and respect.

There is the neurodiversity movement, which promotes social acceptance of neurological difference as a part of the broad panorama of human diversity. It seeks to bring about a world in which people with disabilities can enjoy the same access, opportunities, and rights as all other citizens. Acceptance of variety is essential to benefiting from and understanding the contributions of everyone in our society.
In a nutshell, disability defines a particular minority group that I'm a part of. Disability is me.

When I think about disability, activist Norman Kunc's words run through my mind. As a keynote speaker at a conference, he said no matter how far technology advances, disability will always be here because it is a normal part of human diversity. Way to go Norman!

Students: What does disability studies mean to you? How would you define it, in your own words?

Elesia: I think of it as an interdisciplinary field that explores disability through numerous mediums. Disability studies should be introduced in preschool and it should continue throughout formal schooling years and beyond.

Students: How do you think your life has been affected by disability studies? Is it more negative or positive, if at all?

Elesia: There is a greater awareness about disability in comparison to when I was born, but I still run into insensitive people.

Students: What does literacy mean to you? How would you define what being "literate" means? Illiterate?

Elesia: The term literacy may be looked up in a dictionary. Assuming you're wanting a bit more than that, I shall move on to the importance of Augmentative and Alternative Communication (AAC), which consists of strategies that assist people with specific communication challenges
to participate more fully in any aspect of life (e.g. education, employment, community activities, care management, volunteerism). The general goal of AAC is to achieve the most effective communication possible for the individual.

To reach maximum literacy potential, a key factor involves the medium through which literacy is obtained. Barriers must be either accommodated or removed.

As for people with disabilities, illiteracy is often an unforgivable result of compromised access to ideal communication.

Students: How has your disability related to your definition of literacy?

Elesia: Empowerment and self-advocacy (especially in regards to gaining access to ideal communication) are important steps toward removing barriers to literacy.

As for my life experience, literacy comes and goes. Sometimes I am very coherent and able to understand whatever is thrown at me. Sometimes I am not. My ability to understand is like a light switch that gets turned on and off. This is a profound realization I have come to in regards to myself, and it is as fascinating as it is frustrating. If a work obligation comes to me when I am in one of my fogs, I will not understand, and that leads me to procrastinate. But when the fog lifts, all is clear and I feel invincible.

Students: What role does blogging play in your life? How does it relate to your disability?

Elesia: I enjoy blogging, as it is a way for me to air my ideas and opinions and receive feedback. Being both Autistic and Deaf, I may have unique experiences or perspectives others may wish to learn or read about. We spoke of disability studies above: my blog is a small speck of color that helps to make up the great collage of disability.

Students: Do you feel like blogging has enabled you to better express your feelings about disability? Inform others?

Elesia: Yes. The best part about blogging is that I can organize my disjointed garbled thoughts in one sitting. In a back and forth conversation, doing so would take me much longer. I enjoy reading a multitude of blogs within the disability community, as I learn so much and come away with new ways to explore how society relates to us. I want to know what people with disabilities think is important for others to know. We blog about things that hit us deeply. For readers, it's a voyeuristic look into our personal worlds.

Students: What do you think blogging has done for disability studies, the disability community?

Elesia: Given a forum, people with disabilities may express, firsthand, what's really on our minds. This reminds me of Community Based Participatory Research, which is an interdisciplinary research methodology in which scientific professionals and members of a specific community work together as equal partners in the development, implementation, and dissemination of research that is relevant to the community.

Recommended books on disability/disability rights:

Claiming Disability: Knowledge and Identity, by Simi Linton

Disability Theory, by Tobin Siebers

No Pity: People with Disabilities Forging a New Civil Rights Movement, by Joseph P. Shapiro

Nothing About Us Without Us: Disability Oppression and Empowerment, by James I. Charlton

AASPIRE Healthcare Study 1

2010-05-12T20:43:00.000-07:00

AASPIRE's new survey compares the healthcare experiences of adults on the autistic spectrum, non-autistic adults who have disabilities, and non-autistic adults without disabilities. There are two main goals for the survey. Goal one is to see if there are differences in how people feel their healthcare needs are being met and how satisfied they are with their care. Goal two is to compare the barriers to healthcare for the three groups to see if there are differences in the types of things that make it hard to get health care.

In the second part of the study, AASPIRE will conduct in-depth interviews with about 30 adults on the autistic spectrum. The main goal is to get an in-depth understanding of autistic adults' experiences and recommendations about healthcare, including examples of what worked or did not work and what they think would help them get better healthcare. If eligible, you can choose to participate in an interview via email, online chat, or telephone.

Participate in a New Gateway Study

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.
Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:

Register for a Gateway account at the Gateway homepage http://thegatewayproject.org.
Take the online Gateway Survey. It will take about 20-40 minutes to complete.
Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can

Go to the Gateway home page at http://thegatewayproject.org
Send an email to Dora Raymaker at dora@aaspireproject.org
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602

Breaking Boundaries: The Art of Alex Masket

2010-05-04T11:09:00.000-07:00

This film has been accepted to the Berkshire International Film Festival. View and vote for this awesome documentary by clicking here (scroll down to Breaking Boundaries)!

Breaking Boundaries spreads a positive message about autism that is free of fear-mongering and pity, a terrific way to raise autism awareness.

Dr. Kathleen Hull of Rutgers University spoke eloquently on the subject of autistic communication, expression, and humanity. She put it well by stating that instead of pathologization of autism, why not explore it and discover how autistic individuals see the world? This idea is fundamental to education. Why not approach autism as a theme and open our minds to ask what it means to be a human being.

As mentioned in the documentary, Alex's nonverbal nature has forced the art community to question standard communication, as his artwork is deeply articulate. Alex's communication and language is visible. And it teaches us that verbal ability is not linked to our intelligence or to our ability to communicate in powerful ways.

Alex's mother made an especially poignant statement by expressing that Alex has spent enough time trying to be who everyone else wants him to be. Now he is showing us who he is, as in: This Is Me.

Elesia gives this film two thumbs up! What a wonderful message. What a wonderful world. What a wonderful way to reinforce the concept of a social model of disability.

Check out Alex on Facebook by clicking here.

You may peruse Alex's Photo Gallery at his website (www.alexmasket.com).

World Autism Interviews: Spacey Hippie/Portland, Oregon

2010-05-04T08:42:00.000-07:00

Elesia: You are self-diagnosed as being on the autistic spectrum. What do you feel are the main barriers that prevent self-diagnosed autistic individuals from gaining an assessment if they wish to pursue a formal diagnosis?

Spacey Hippie: the main barrier is: i don't know who to ask. one of the questions i have is: where should i go, who'd be best? i have the hardest time finding out where to go n how to get there

i've taken a few autism tests online (scored as expected, just over the line) but that's not accredited, it's only a guide: like astrology (colloquially, entertainment only) legally you can't take it to anybody

mostly what i've found is absolute nothing: as if it's all in my head. and that's the real barrier: what you get back from the world is the same as if everybody's like that, cuz no one has the authority to say: yeah, here's what this is, n now we're gonna give ya what ya need (n then knowin whatever that is already as they're worthy of that authority) n often no one wants to speculate on any subject involving empathy so they're either... really for it... or refuse to have an opinion...

n that's if you have health insurance which i do, from being on disability... but if i didn't have that, there'd be no way...or i'd have no clue

the biggest barrier is someone like me is... powerless, uninformed

Elesia: You are diagnosed as agoraphobic. What unique challenges do you face when pursuing assistance and services as a person who is agoraphobic and autistic?

Spacey Hippie: well, first thingy is: people don't believe in it... or they have no sympathy no understanding comprehensive compassion... n don't have to

cuz everybody feels a little social anxiety, n they think that's all it is... n that i just simply refuse to get it... n therefore, i'm bein a big baby... at which point, no respect for me... so it's a form of bigotry... totally... n why am i so nervous all the time? i dunno, yer job requires dispassion?

my brain actually shuts down... i become intellectually disabled, i lose half my IQ: forget how to make change, tell time n then i get taken advantage of easy... so now we know why no one was acknowledging... n now i'm bein paranoid

where my autism kicks in (n it was there from the start) is: i can't deal with corporate... i can't handle a phone call... objection: pressure

n in order to get help with that that's just what i have to do... which i'm no good at... n it damages me, mere attempting... n little thingies, like sitting in the waiting room for 45 minutes filling out forms... dude, i can't handle that... tough, too bad... only option... n then what the appointment or phone call... or runaround turns out to be... (and i knew it)

so there's no avenue set up for me to follow... anyways it... is a fruitless endeavor, no solution possible... but no one will admit they don't have every answer i could ever possibly need initially... n corporate = zero flexibility...

but just that right there: that i can be so easily dismissed... they know i'm a sap, or too silly... so therein is sufficient auto-irony (n society creates its own satirists)... but that system is not designed to target n fell people like me, is it? it's just we're a minority...

i need an in home care worker... n not like an elderly or physically disabled person (i can do my own laundry n dishes) but it's such an abstract concept that people don't hafta understand it if they don't want to... no one's ever heard of such a thing... i go away feelin silly, which is my problem being so alienated...

frustrating, desperation n then i become too absorbed in it n think "man, my life is such a mess" ...and i really need to do something about it, but i can't, or not well enough, so i fail... but there's nothing else to do... if i become unable to do anything, even just watch tv... debilitating... whatever my affliction, i feel like i'm in prison

Elesia: What do you feel is assumed or misunderstood about people who are autistic as well as agoraphobic?

Spacey Hippie: seriously, no one knows what agoraphobia means... it's from the greek... fear of the marketplace... crowds, basically... being around people is associated with...things going badly...

n as for autism... if you think of a savant, you know there's something missing... i think it's confused with Tourettes and such, but society so pushes individuals to excel... n justa fit in... that we forget that the so afflicted are not these like rare anomalies, not like dots on a map... some static on the species, or people missing a circuit... it's more of a gradual thingy n those with it only a little... learn to hide it, compensate... even never know they have it... n those of us who can't do that... that's one of the functions we're missing

n if it's a really super ordinary thing, like agoraphobia... going to the store, going out to check the mail... my friends don't understand... they think i'm... whatever... being silly, extraordinaire...

i'm the guy who can't function without an assistant... who never made enough money to be able to afford one (some people need glasses)... and on needing an assistant: there's a million people on this planet who can solve this problem in 10 minutes, i need to talk to one of them for about 10 minutes

Elesia: What is something you would like people to know about both autism and agoraphobia?

Spacey Hippie: to be without wisdom or reason is both unwise and unreasonable

n here's the part where i say, "we rule," or, "we rock" (n some of us do, back n forth... it's what we do)... n i don't mean that disparagingly... n yes, funny, but in the nicest possible way, that maybe many people really don't even see... we needta be looked after... n more'n jus put inna box, ok?

(on Fraiser, the other day) Freud said "we need 2 things to be happy: work and love" ...translation: something to do n someone to share it with

Elesia: What keeps you going when life overwhelms you?

Spacey Hippie: Dilbert sez: the cure for loneliness is feeling like yer being listened to... getting someone on the phone is usually the highlight of my day... especially someone i know... or someone who can help me

i feel like i'm the only musician in town that doesn't have anybody to jam with (that wants one)... i'm a musician, i jam a little... but ya hafta play well... otherwise it's embarrassing... i should play daily, but it's hard to when yer depressed...

like, what i did just now is: dishes (add house cleaning to accomplishments); and it'd been pilin up for a coupla daze, n my once in awhile scrub out the sink didda good job, hooray... now i feel like jammin...

Elesia: Tell me about your comic Dudeman.

Spacey Hippie: i should pack the whole thing up n label it: "things you tell liars" ...this is what inspires dudeman episodes... all the frustrating things you think of, that need to be said, and often aren't:

wow, you get to be totally be like that n no one stops you?

izzit that you want me to... guess?
izzit that you want me to... guess...incorrectly?
izzit that you want me to... keep...guessing?

Elesia: Thank you for this interview.

Click here to check out Dudeman. Click here to visit Spacey Hippie's website.

IACC Appoints Ari Ne'eman of ASAN

2010-05-01T14:49:00.000-07:00


Interagency Autism Coordinating Committee (IACC)

The Autistic Self Advocacy Network applauds Department of Health and Human Services Secretary Kathleen Sebelius' appointment of Autistic Self Advocacy Network President Ari Ne'eman to the Interagency Autism Coordinating Committee (IACC), which is a Federal advisory committee that coordinates all efforts within the Department of HHS concerning autism. ASAN has given regular public comment at IACC meetings and looks forward to continuing to be an active part of the IACC process.

To learn more about the IACC, visit http://iacc.hhs.gov/

A news release has been posted on the HSS website:

http://www.hhs.gov/news/press/2010pres/04/20100430a.html

Misperceptions About Diagnosis of ASD in Adulthood

2010-02-04T09:16:00.000-08:00

Some people believe individuals identified with Autism Spectrum Condition in adulthood have less impairment and better overall functioning across the board. This is a perfect example of a biased belief that does not apply to all individuals identified in adulthood. It is a myth that serves to disadvantage late-diagnosed adults, as well as undermine healthy views toward this population.

Some autistic adults may have been previously misdiagnosed with conditions such as ADD, intellectual disability, OCD, a personality disorder, schizophrenia, et cetera. This is especially true for adults born before autism was included in the Diagnostic and Statistical Manual of Mental Disorders (though autism is contained and defined in the DSM, autism is a neurological condition that is classified as a developmental disability. It is NOT a mental disorder).

Asperger’s was not introduced into the DSM until 1994, which explains a notable percentage of adults recently identified as Asperger's autistic (it's important to note that these adults are often included in current autism statistics).

Should we assume that individuals who meet the requirements of an ASD diagnosis in adulthood (of which a mentionable percentage may have been hospitalized or suicidal at one point in their lives) have little to no support needs due to their acquired ability to often pass as what is perceived to be normal? Does learning how to cope with, cover up, or even hide a disability mean than a person is not really disabled, or that such a person has grown out of a disability? I strongly disagree.

How do such assumptions positively foster understanding of late-diagnosed autistic adults? It takes a lot of courage to question or seek an autism assessment as an adult. Autistic adults--in addition to those who are deeply familiar and personal with autistic adults--have related that in many cases, the functioning or impairment of an autistic adult may actually be similar to what may be seen in autistic children, yet the autistic adult’s ability to compensate for it, or hide it, may be anywhere from mild to moderate to extreme in sophistication.

Some individuals who are diagnosed as having ASD in adulthood may have light support needs. Others may have moderate or heavy support needs. These needs can and often do vary over the course of a lifetime (ex: light needs one season or year, and moderate or heavy needs the next). Day to day variability across the lifespan, and task-based variability, are important points that are in no way tied to what age a person is when diagnosed with an ASD.

Most, if not all, individuals on the autistic spectrum have uneven skills and strengths. An example of this would be an autistic person who is a computer whiz, yet challenged or completely incapable when it comes to attending to self-care needs, checking the mail, grocery shopping, housekeeping, or preparing a sandwich. It is important not to box and rigidly classify individuals on the spectrum by using only functioning levels, which are subject to incongruence and variability.

Myths about autism and late-diagnosed adults too often lead clinicians, community members, families, and service providers to believe or say unfortunate things to late-diagnosed adults on the spectrum. Some examples:

“The fact that you can walk into my office and ask for a diagnosis means that you cannot possibly have an ASD;”

“I don’t agree that you have an ASD. You seem to have a great sense of self-awareness, plus you are quite articulate;”

“You get overstimulated in daily life? So does everybody;”

“You think your employment issues are related to autism? You’re just lazy;”

“Your level of intelligence makes it hard for me to believe that you could possibly have any support needs;”

“You have friends plus a significant other? No. Autistic people are incapable of that;”

“You don’t look or seem autistic. My cousin and my best friend’s children are autistic and you are nothing like them;”

“Your ASD is very slight, if that. The fact that you have received a diagnosis in adulthood means that you are obviously capable in daily life.”

I am profoundly deaf. In addition to American Sign Language, I successfully use a cochlear implant. My cochlear implant has significantly increased my speech intelligibility. Acquaintances and strangers may not ever suspect I have a profound hearing loss. Matter of fact, if someone were to ask an acquaintance or stranger if they think I am deaf, they may likely respond with something like, “No. Elesia could not possibly be deaf. She hears and speaks to me just fine.” And they would be absolutely certain.

But in reality, I am deaf, and without the use of ASL, my ability to easily communicate in situations where there are either a lot of speakers or significant background noise, I am at a loss. Without my CI, my world is nearly silent (which I happen to like). I do not try to pass as a hearing person, but I cope with my deafness in a hearing dominated world by advocating for my needs.

Does the ability to set up ideal communication or hearing environments whenever possible make me any less deaf? Not according to an audiological instrument that measures hearing loss.

My deafness is a HUGE issue when it is not accommodated, yet it can easily be undermined or go undetected when I have appropriate useful assistive devices, communication, and support in place. Without such supports, the change in my functioning level (outside of my comfort zones) is immediate and radical. Take away my ability to advocate and set up ideal environments and there would be absolutely no room for denial in regards to my hearing loss.

The same goes for my diagnosis on the autistic spectrum.

I am self aware enough to know how to set my world up so I can function best. I know what to avoid, and I constantly strive and struggle to know what routines, support, and whatever have you I need to be my most successful in life. I am a highly self-determined individual. But again, without the supports I have in place, my whole world would come crashing down and the person I am with intact aid would become significantly less functional. The last thing I would need at that point is for someone to deny me assistance based on misleading assumptions, perceptions, or myths.

I cannot put words to how adverse, damaging, demoralizing, and depressing it is for autistic adults who have gathered enough skills to fit in—in this often unforgiving world—to not always be able to count on being taken seriously by the very people who are appointed to help them.

Most individuals identified as having an ASD in adulthood have less impairment and better overall functioning? I disagree. I recommend something more appropriate and useful, such as: autism may present differently in adults than it does in children.

World Autism Interviews: Amanda Baggs/Access to Quality Healthcare in an Autistic World

2010-01-27T12:58:00.000-08:00

Amanda Baggs is a 29-year old autistic person who also has various cognitive and physical impairments. Her interests are cats, ethics, cats, cats, ethics, children's books, writing, ancient Egypt, ethics, and cats. By ethics, she means the application of personal principles in specific situations in a flexible manner rather than a rigid ethical code (because she figures reality is more complex than any ethical code could ever be). Most of her writing is about applying those ethics in various situations, and she participates in movements like disability rights because of those principles rather than the other way round.

Elesia: Please share with me in what ways being on the autistic spectrum has effected your ability to obtain quality healthcare.

Amanda: I have a hard time knowing what symptoms need to be reported and I have a hard time reporting them even if I know they exist. My body language rarely matches what most people would expect given certain kinds of symptoms. I have frequently had serious medical problems neglected, either because doctors haven't known how to look for them, or because they didn't believe me when I told them. And since I have the particular appearance I do (I am not sure what aspects of my appearance cause it, but I know that people who see me often act like I'm not really a person), I have also run into neglect from doctors or other medical professionals who were flat-out prejudiced and didn't want to help me at all.

There is prejudice against autistic and other disabled people that says that our reactions to pain and other medical symptoms are actually behavior problems. Ideally, when a doctor has an autistic patient they should do a lot more objective testing to make up for communication or perception differences that make it hard for autistics to report exactly what's going on. When that has happened for me, the problem was invariably found in the end. But I have nearly died a disturbingly large number of times, because appropriate testing wasn't done and people assumed I was okay when I wasn't.

Elesia: Please share an example that touches on the above mentioned issues.

Amanda: I began having a lot of pain that I couldn't really isolate as pain, and it began affecting my ability to function. By the time I did figure out something hurt, I couldn't locate it. I was sent to one specialist who didn't want to bother with me, and he actually slammed the door in my face after screaming at me that he was right about what was causing my problems (even though I wasn't, for instance, eating the foods he assumed were causing the problems). My staff person said she'd never seen that much rudeness from a doctor in her life.

Years later, I started doing things like lying down on the sidewalk, moving slower in general, not understanding as much of the things that were going on around me, and other things that showed something was really wrong. I was in even more severe pain, and I was very sick. It occupied so much of my mind that I couldn't understand it or articulate it very well. Some people around me got mad at me and thought it was a behavioral problem. A staff person finally realized I should go to the doctor, and took me there. I explained to the best of my ability (which wasn't a lot) what was going on. The doctor pushed straight on top of the area that was causing the worst pain, and I didn't move or say a word. She said that since I didn't respond when she did that, she was pretty sure it wasn't that, but that she'd send me to an ultrasound anyway. (And this was a decent doctor, she just didn't entirely realize the extent to which my reactions differed from other people.) The ultrasound indicated a severe problem. I got surgery very quickly, and the surgeon found that the organ in question had failed a long time ago. The surgeon ended up writing a nasty letter to the specialist who had slammed the door in my face.

I am afraid of doctors and don't tend to go to them unless I know something's very wrong. I am believed much less often on the first try, because it always seems to be assumed that I either don't know what I'm talking about, have bad behavior, don't have the right body language, am not worth treating even if I do have something wrong, or whatever other excuse for not believing me when I say something's wrong. And from what I've gathered from talking to other people, and reading the few things people write about such things, this is a fairly typical experience for an autistic person, for a developmentally disabled person, or for a disabled person in general.

Elesia: How does it make you feel when you reflect on your negative healthcare experiences?

Amanda: I get either really annoyed and pissed off at the doctors, or really scared that it will happen again (or will happen to my friends) and that this time it'll be too late or something.

Elesia: At what time in your life did you feel that the people who you are closest to, and that the people who help to support you, fully understood your healthcare issues and struggles? Also, how did this transpire?

Amanda: As far as the people who support me, that happens gradually over time. The turnover rate in this field is so high that most of them don't last longer than a few years at most. Over time, with case managers and such, I've built up more and more information for them after they've seen me end up in the hospital, or gone to appointments with me, for long enough that they start to figure out what's going on more and more over time. The people I'm closest to have mostly had similar experiences so they already know about things like this.

One person who supported me had another client--at the same time that she was learning about prejudice in healthcare--where she took him to the emergency room and the doctors took one look at him and said "He won't live out the night" and refused to treat him. She had to scream at them a good deal to get them to take care of him. Several years have passed since that incident, and as far as I know, he's still alive. For years, he had a dislocated hip and all kinds of health-related issues. So she'd already seen it with him, and when it happened with me, she was the one who knew to take me to the doctor if I started acting different.

Elesia: Please give a few examples of how you may act differently when a healthcare issue is the culprit.

Amanda: One thing a friend has told me is that whether the issue is pain, overload, or a medical issue, I seem to often become more slow in movements, my expressions get even flatter, I respond less quickly to other people, and I look more stereotypically autistic than before. It's like all the little ways in which I normally struggle to look a little more comprehensible to other people, fall apart. I also start being less capable of whatever I normally do. Like I might not be able to type, I might not be able to move my wheelchair, I might not be able to understand what people say, all those things that normally take effort, tend to fall apart because I don't have the energy left to do them.

I also often end up very much attached to any hard and solid object near me, like I grab onto it and won't let go for anything. (That's because the feelings in my body make me feel kind of liquid and floaty and if I grab something solid it makes me feel more solid myself.) One time when I was delirious and in and out of conscious awareness I "woke up" in a room where this guy was prying me off the bedrails that I had somehow entangled all my arms and legs in them trying to hold on really tight and was pressing on them with my face. I also might just stop doing whatever I'm doing wherever I am, and lie down. I notice with toothaches I often hit my face. It really depends on what the situation is. I have friends who can spot something wrong right away, but I don't know beyond what they have told me about how it is that they can tell.

Elesia: What do you feel are some of the most damaging assumptions and myths about autistic people when it comes to healthcare and service providers?

Amanda: The absolute worst assumption is that we don't matter. That we have such a low quality of life that it's better to just "let nature take its course" with us if we get sick, whereas a non-disabled person would get treatment for the exact same condition. And that's an assumption we have in common with a lot of other disabled people, it's not unique to autistic people. Another myth is that we don't feel pain, or that when we do report something, we must be either mistaken or making things up for attention. Another myth is that if we are not responding to pain in a really typical way, then the pain is not there. (I remember reading in a book by Tony Attwood that two autistic boys with a very high level of expressive language, started acting a bit different and got taken to the doctor. One of them had a crushed testicle, the other one had appendicitis. Both of which are very painful conditions. And neither one of them said a word, and neither one of them reacted in typical ways to pain. I have had similar experiences.)

Another assumption is that if you don't find anything with the first test you do, then nothing is there. Often we have trouble reporting the exact location of pain, so it's necessary to do many more tests before you can figure out what's causing the problem, and often it seems like the tendency is to assume there's no problem rather than to assume we just haven't found the problem yet.

Elesia: Let's end with a few questions about communication and interaction. What advice do you have for healthcare providers--or any person--who does not know a lot about communicating with autistic people? What do people need to keep in mind when communicating with individuals like you? Also, is there something that a lot of people do, and they have good intentions, but it is actually offensive or off-putting?

Amanda: One of the biggest problems I have with doctors and communication, is that they don't leave enough time for me to communicate. I communicate about three times slower than the average person, and I also take longer to understand things others say (even harder than communicating in words is understanding them) unless they're what I expected. I have actually had doctors walk in, ask a question, I start typing my answer, and they go "Call me when you actually want to communicate, I don't have time for this," and run out the door before I can say anything to them. Or "I have other patients and this is taking too long." I try to ask doctors now to leave extra appointment time, but only some of them do it.

Another thing they often do is expect me to process information very quickly, when that's not possible. They poke my body and say "Does it hurt here?" "Or here?" "Or here?" and by the time I've figured out whether something hurts or not, they've pressed five more spots on my body. Sometimes I can remember to do what they want and say "ow" or pull away if something hurts, but a lot of the time I can't figure it out in time.

One thing that I think doctors should do nearly across the board with autistic people, unless it's for some reason not possible or advisable, is to do more testing on us, not less. Because we may be able to say something hurts, but we may not be able to give the full picture even when we're trying. This is a problem if what we have is something that doesn't show up on tests, but it's better to just do as many of the tests as possible, because often the first or second or even third thing you think of isn't the problem, because we don't report things in the same standard way most people do.

One of the things people seem to be well-meaning about but that creates real problems, is get in my face, try to make eye contact, and then talk really loudly two inches from my face. In fact my very first doctor used to do that and my mom said my response was to sort of skittle all the way to the back of the room and try to hide in the corner. My reaction is only a little better right now. Talking louder makes it harder for me to understand. Getting in my face makes it harder for me to understand. Making eye contact makes it harder for me to understand. None of these things are good things in the end.

Elesia: Thank you so much for this insightful, poignant, lovely interview. I appreciate your time.

Take action to help improve health care for autistic people:

Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) Healthcare Study 1

Related article on autism and health care:

Health Leaders: On the Spectrum

World Autism Interviews: Alex Cheezem/Applied Behavior Analysis

2010-01-21T18:32:00.000-08:00

Alex Cheezem is autistic. He recently completed Nova Southeastern University's program in Applied Behavior Analysis and is presently engaging in supervised fieldwork, with approximately 250 hours remaining before he can sit the BCaBA exam. Alex's hobbies include reading Cochrane Reviews, trolling epidemiology journals for experimental methodology articles, and following autism research.

Elesia: Please share a summary of your background, experience, knowledge, and training in relation to ABA.

Alex: I suppose my background and experience start when in my adolescence. While I was running the metaphorical gauntlet of misdiagnoses that many of us on the spectrum seem to experience, one of the "treatments" I was subjected to -- based on a complete misunderstanding of what was going on with me -- was a particularly incompetent form of ABA-based "therapy".

I have to clarify on this that I don't just mean that the people in question were abusive. They were using abuse as a substitute for skill and understanding, and their lack of those was pretty extreme.

That experience left me rather thoroughly traumatized, but I eventually got a sense of closure and moved on.

I studied ABA as part of my undergraduate psychology courses, and entered the postgraduate BCBA/BCaBA certification program at Nova Southeastern University in August of 2008. I completed the full BCBA coursework as of August of 2009. At present, I'm about 250 hours of supervised independent fieldwork away from taking the BCaBA exam -- the BCBA exam will have to wait until I get a Master's.

I've completed two semesters of practicum in ABA at the Mailman Segal Institute for Early Childhood Studies. Most of that time was spent working with the Baudhuin Preschool, which specializes in autistic children. I'm presently working on setting up supervised fieldwork, but running into a variety of delays.

Elesia: Is the ABA approach for children who are on the spectrum regulated by a professional organization?

Alex: That's a misleading question -- there isn't a singular ABA approach for anything, much less for autistic children. That said, such approaches are supposed to be. I phrase it like that because the Behavior Analyst Certification Board really only has control over people who certify as behavior analysts, and not everyone who practices based on ABA does for a variety of reasons.

This can be benign -- for instance, psychologists often incorporate behavioral techniques into their practice; in that case, their practice simply falls under different authorities (and, frankly, stricter ethical codes). It can also be quite problematic.

The full situation is phenomenally complex, and doesn't lend itself to a brief answer.

Elesia: What do you feel are the positive aspects and benefits of using an ABA approach with children who are on the autistic spectrum?

Alex: I think I'll need to take a step back and address what ABA and ABA-based approaches are. Modern ABA really started as a reaction to psychoanalytic theory, and its roots really show in a lot of places.

In essence, B.F. Skinner decided that the explanations based on inner processes and subconscious hypotheticals were responsible for a lot of the problems with psychoanalysis, and decided to go in the opposite direction. Contrary to a number of people's beliefs, he didn't say that those processes don't exist, but rather that they couldn't be directly observed and thus would be difficult -- if not impossible -- to study.

Anyway, several of the advantages of behavioral approaches to dealing with issues come from the fact that ABA basically ignores the mind and inner experiences and instead focuses on observable, measurable behavior.

How a behavior analyst practices -- or is supposed to practice, anyway -- is by measuring and observing patterns in behavior. Based on these patterns, they then make changes in that environment (including the behavior of the people in it) in order to exert prospective control over some aspect of people's actions.

There are obvious potential issues here, but discussing them doesn't really lead to an explanation of the advantages to ABA-based approaches.

Despite the best efforts of some truly gifted researchers, we still really haven't come to a practical understanding of autistic learning processes and how they differ from neurotypical learning. Since we don't have that understanding, the best we can really do in clinical practice is to acknowledge this.

What I'm trying to get at here is that ABA-based approaches don't require knowledge and understanding that we don't have. I'm sure that we'll develop better methods in time, but we certainly aren't there yet.

ABA-based methods are also extremely flexible. The same basic approach can be applied to getting a child to stop tantrumming at mealtime and to get him to learn arithmetic.

Finally, I suppose I should mention that the empirical support for ABA-based methods is generally better than that for any other type of autism approach available... although that is admittedly not saying much.

Elesia: Explain the potential dangers, drawbacks, or negatives related to ABA-based therapies for autistic children.

Alex: There isn't exactly a shortage of them.

When you practice based on ABA, you are attempting to manipulate or control what someone else does… and there's a huge number of problems with this, mostly centered around the issue of someone deciding what is acceptable behavior for someone else.

Understanding behavior analysis does not mean understanding autism. Many behavior analysts basically think of autism as nearly interchangeable with mental retardation, certain issues in Angelman's Syndrome, and so on, mentally lumping all of the conditions together as "developmental disabilities". This is not accurate... and the confusion can lead to a number of problems.

Then, of course, there are the people who make inflated claims about just what practice based on ABA can or can't do, those who don't practice based on the evidence, and those who don't seek adequate training and/or understanding. Frauds and incompetents exist in just about any profession, but I think the ABA-based ones are particularly vile.

There's the dangers involving focusing on what a person does rather than on the person themselves. The technical language of behavior analysis doesn't help with this.

There's also the various research issues, like lack of placebo control, lack of blinding, lack of randomization in trials, lack of control for expectancy effects... I could go on and on here, but I tend to laugh inwardly when ABA-based methods are described as "scientifically proven". Beyond the more general fact that science doesn't prove anything (it works by providing evidence, and specifically by providing evidence against ideas, not for them), very few of the studies I've seen are even capable of providing a level of evidence that would be acceptable in, say, Circulation Research.

Of course, they provide a level of evidence that's much higher than most of the education research I've seen, so take that as you will.

Elesia: What do you feel is most misunderstood about ABA in general?

Alex: Everything -- the list starts with just what ABA is and continues straight on from there. It often makes it nearly impossible to get legitimate criticism of ABA and ABA-based practice from people other than behavior analysts... even if the people writing the criticism have legitimate points.

For instance, I ran across a detailed criticism of "ABA" a few months ago that would have been almost entirely correct... if you'd substituted the phrase "Lovaas-type DTT" for every usage of the term "ABA". Suffice it to say that Lovaas-type DTT and ABA are most certainly not the same thing, even if Lovaas-type DTT does have ABA as its theoretical basis.

Elesia: Thank you for your time.

Another blog post on this subject: The Language of Therapy

Parents in the Autism World

2009-12-15T09:01:00.000-08:00

Do Autistic self advocates view parents of autistic individuals as enemies? Do they perceive parents who support organizations such as Autism Speaks as opponents?

It should not be forgotten that a portion of Autistic self advocates are parents of autistic children themselves.

Enemy is a strong word to use toward parents who are most often at the hands/mercy of educational and medical service providers. Information about autism that parents may receive from these service providers often does not focus on self advocacy and equal rights for autistic children. Instead, provided information tends to focus on only medical views of the autistic condition, in addition to services and treatments provided for autistic children. While some of the information contained in the references may be helpful and worthwhile, there is often nothing educating parents on the existence of the adult Autistic community and its literature and organizations. Parents are given little to nothing in regards to the concepts of autistic self advocacy, disability rights, and the social model of autism.

A parent's main concern is going to be to help their child by utilizing whatever means are available. Good Parenting 101 = Help Your Child No Matter What. Parents will naturally lean toward autism-focused groups and/or organizations offering help and support. Inspecting the inner-workings of such groups and organizations may be the last thing on a parent's mind when they are knee-deep in making sense of the new course or path their life has taken.

People who have never been exposed to disability on a wide scale cannot even begin to fathom why an autism-focused organization--such as Autism Speaks--may not necessarily be all that it claims to be. After all, why on earth would organizations that are claiming to help the disabled have nothing but only the best of intentions?

Self advocacy and empowerment of the disabled is a giant step in thinking when coming from a place of needing healing, help, and support, especially when the support services offered have come from a one-sided medical perspective.

Some parents of autistic children are extremely proactive, sensitive, and thoughtful. Some parents latch on to the first thing they see/try and cling like a vine. Some parents reach out and contact other parents of children on the spectrum and ask what those parents are doing. Some parents go home, Google autism, and BOOM: Autism Speaks and Autism Research Institute appear.

It is of significant importance to remember that heart-broken well-meaning parents are going to be quite confused when they see Autistic adults protesting an organization that has essentially served as a resource to parents of autistic children. Many parents who feel they have done a decent job navigating the world of autism are going to be shocked when they see a protest sign with a message reading: Autism Speaks Does Not Speak for Us! Or: Nothing About Us Without Us!

Autistic Self Advocacy Network (ASAN), The Autism Acceptance Project (TAAProject), and TASH are organizations that are just as valid for parents to know about and utilize as resources. Are we fully preparing autistic children for life if we ignore the voices of autistic adults? What message does that send to ignore autistic adults and exclude them from important decision-making processes?

Thanks to the intolerant structure of our society, many people need to be taught to release fear, pity, and myth in order to accept what is different. It is a shame that we seem to be born with acceptance and tolerance intact, however, some of us are poisoned by the social climate we inhabit (ex: media throwing around the word retard as if there is no consequence, therefore feeding and perpetuating damaging conscious and subconscious stereotypes).

Many upright well-intentioned people do not know how to accept autism because it is not being taught on a wide enough scale. People have to want to accept autism, and only then can they Google it and make informed decisions regarding the sources presented.

There is a great void to be filled. As far as the Autistic community is concerned, we have a lot in common with parents, only it needs to be explained that the *means* of cure is not effective toward our common ends. I would like to see the growth of auxiliaries to autistic self advocacy organizations and groups so that parents may get involved in a pro-self advocacy spirit.

Parents of autistic children are not the antagonists of the Autistic community. They are potentially our greatest support.

[26 March 2010: A few readers have commented that they DO NOT feel that tolerance is innate from birth. While I agree that tolerance must be taught from as early an age as possible, the sentence a few paragraphs above, "It is a shame that we seem to be born with acceptance and tolerance intact..." is intended to show that we are products of our environments. For example, children who are raised in homes that teach love and tolerance have a high chance of being loving and tolerant in adulthood.]

ASAN seeks advocates to fight against school abuse

2009-12-08T08:14:00.000-08:00

Bipartisan federal legislation to protect children from dangerous restraint and seclusion in classrooms will be introduced this Wednesday by U.S. Reps. George Miller (D-CA), who is chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA), who is a member of that committee, as well as the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov at 11:00 AM EST on Wednesday, December 9, 2009.

A recent investigation by the U.S. Government Accountability Office found numerous reports of injury and, in some cases, death as a result of the inappropriate use of restraint and seclusion in classrooms. Many victims were children with disabilities. At present, there are no federal policies that prevent the misuse of restraint and seclusion in schools, and many states also lack sufficient regulation to protect children from these harmful practices.

The primary focus of the legislation above is to limit restraint and seclusion to where it will only be allowed in the event of an imminent danger (to the person or to others) and only if alternate techniques have proven ineffective. There is funding available that will flow to states to create training programs on alternatives to restraint and seclusion, including techniques such as de-escalation, conflict prevention, and conflict management.

ASAN is currently looking for volunteers to help with efforts to pass legislation that will protect students against school abuse. If you would like to help ASAN spread the word about these upcoming advocacy efforts, please write to info@autisticadvocacy.org (or visit Contact ASAN) to volunteer. Enter "Restraint and seclusion" in your email subject line.

Survey to Assess Needs for Improved Course Designs

2009-12-03T14:33:00.000-08:00

The Academic Autistic Spectrum Partnership in Research and Education believes in promoting research that is inclusive, respectful, accessible and relevant to the autistic community. As such, AASPIRE is writing to you to let you know about a non-AASPIRE study that shares AASPIRE's values.

Please see below for more information about a study being conducted by Christopher Wyatt.

AASPIRE hopes you may be interested in participating in this study. -The AASPIRE Team

Survey to Assess Needs for Improved Course Designs

As colleges and universities offer more courses online, it is important that we consider how students with autism spectrum disorders approach online communities, especially online classes. My experiences as a diagnosed high-functioning autistic student and instructor have led me to question how online courses could be designed to better serve students with autism spectrum disorders. I am conducting a survey, seeking to determine if there are characteristics of some online communities ASD individuals prefer. I am also interested in learning what qualities of online communities might be disliked by individuals with ASDs.

If you are an individual with an officially diagnosed autism spectrum disorder interested in offering opinions about online communities, I hope you will consider completing this brief online survey. You do not have to be a student. However, you should have some experiences with online communities so you can explain what design qualities are or are not appealing in various communities.

This will be an anonymous survey. Only your answers to interview questions will be saved and referenced during the study. The survey is offered via a secure server and all data will be destroyed after analysis is complete.

If you are interested in participating in these interviews, please visit the following survey link:

https://www. surveymonkey. com/s.aspx? sm=6hUN2HISyDpNY nlwPpLkxQ_ 3d_3d

Click Here https://www. surveymonkey. com/s.aspx? sm=6hUN2HISyDpNY nlwPpLkxQ_ 3d_3d to take survey

Thank you, Christopher Scott Wyatt Doctoral Candidate

Rhetoric; Scientific and Technical Communication

Digital Literacy and Pedagogy

Dept. of Writing Studies

University of Minnesota

wyatt050@umn.edu

This study is referenced by University of Minnesota IRB Code Number 0909P72516.

*Study closes 31 December 2009

Dora Raymaker & Me

2009-12-01T16:45:00.000-08:00

Who says autistic people can't make good friends?

Stirring Up Action: The Winds of Disability

2009-11-11T14:04:00.000-08:00

The greatest disability is not of the body, but of a closed mind...

From whom do we access information that leads us to gather facts and to form opinions about disabilities? Do we turn to academics, doctors, instructors, and therapists? Governing bodies, media, and schools? Family and friends? How do we process and understand the varying approaches, facts, and opinions? Who do we decide will bear the most weight in helping us to create internal dialogues and references for understanding disability? And what factors lead us to believe one source, or sources, over another? Do we think with our hearts? Or do we think about what is acceptable to mainstream society?

Where are the voices of the disabled? And why is their public representation often meager, or token, at best? Why does one need to go through a personal awakening and revelation to conclude that the voices of those who are disabled not only exist, but are strong, valid, and vibrant?

Beneath the myopic confines and constructions of those who claim to know best are the whispering voices of the disabled. Voices that, once you stop to tune into them, become very loud, honest, insightful, meaningful, and real.

The number of books written by academics and clinicians that are marketed to parents of young children who are disabled is massive in comparison to the number of books written by disabled people. This is a typical example of the the damaging myth that disabled people cannot possibly speak for themselves. Something as innocent as a book is a prominent reinforcer that disabled people should be seen (if even that), but not heard.

Media plays a colossal role in shaping public perception. Unfortunately, disability in the media is often centered around fear and pity, or treated with benevolence and do-goodery. Well-intentioned or not, such messages are adverse, ruinous, and useless in raising and shaping effective and positive mass consciousness. Conditioning people to mourn the disabled counters proactive messages and stifles the chance for understanding the scope of disability. How is the disabled self-advocate, who has fought hard for the right to self-esteem, supposed to feel accepted and welcome when media and medical establishments often paint all conditions with the same authoritative brush? The Disability community has waged a grueling crusade (which is often challenged, ignored, or silenced) for equality, integration, respect, and support.

Unfortunately, most people are often exposed to only a small handful of persons experiencing a disability. With such little contact, that may be laden with discomfort, misunderstanding, and stigma, we are sheltering ourselves from the rich reality and spectrum of disability.

As a person who is both on the autistic spectrum and deaf, I have tolerance neither for illiterate comparisons (such as comparing autism to a fatal car accident), nor being regarded with suspicion when I do not act or appear the same as other autistic or deaf people that a person has met, lived with, or seen. Why is it okay with so many people to view disabled people with disbelief and/or skepticism when we do not fit a mold that is often not created by us in the first place? Why are we often judged with such a heavy hand? And who decided that it is okay to take away our voices and to speak for us without including us?

Challenging benevolence can lead to belligerence, with indignant voices saying: You absolutely cannot challenge altruism, charity, do-goodery, and walk-a-thons for the disabled! To that, the Disability community says: Oh yes we can. Nothing About Us Without Us!

The winds of disability are calling all citizens to action...

Norman Kunc, a well-known speaker on the topic of disability, focuses on the educational rights of students with disabilities, as well as how communities and schools can build a sense of belonging devoid of false allegiances and perceived common enemies. Norman is an especially moving and powerful speaker who owns his voice. He once said, "No matter how far technology advances, disability will always be here because it is a normal part of human diversity."

Fortunately, it is becoming more common for governing bodies to make an effort to reach out and include disabled people (and more than just one *token* disabled person) in their decision-making processes. For example, the Oregon Commission on Autism Spectrum Disorder has taken strides by including autistic self-advocates on both their committee and subcommittees.

Let's step forward to nourish and promote disability advocacy and empowerment, as well as leadership and public education. Support the voices of disabled people. Collective thinking and action is the key to transforming the hearts and minds of humankind in regards to the place and value people with disabilities have in society.

For further exploration:

American Association of People with Disabilities (AAPD)

Self Advocates Becoming Empowered (SABE)

TASH - Disability Advocacy Worldwide

It is a fine thing to have ability, but the ability to discover ability in others is the true test. -Elbert Hubbard

Disability Writes

2009-11-07T08:55:00.000-08:00

What is a normal human, and who is allowed to define the boundaries of normal? Does *normal* include the fact that no matter how far technology reaches, disability will always be an intrinsic part of human diversity and society? Though some people are born disabled, most people, as they age, will experience some degree of disability, whether mild, moderate, severe, or profound.

Disabled individuals have a right to be disabled. In place of overeager benevolence and pity, disabled people need innovation, reciprocity, respect, and support to be who are they are in life. There is nothing horrific or shameful about being different, disabled, or unique. Horrific and shameful are words that belong to the negative attitudes, prejudice, and stigma many disabled people face.

Here are some books related to both disability rights and disability studies recommended by a few acquaintances, friends, and me.

Bending Over Backwards: Essays on Disability and the Body by Lennard Davis and Michael Berube. This book takes a critical look at what we define as normalcy.
Claiming Disability: Knowledge and Identity by Simi Linton. This book offers insight into the social model of disability verses the medical model.
Deaf Subjects: Between Identities and Places by Brenda Jo Brueggemann. This book explores the power of American Sign Language, as well as the diversity within the Deaf community, inclusive of deaf identity.
Disability Theory by Tobin Anthony Siebers. This book has been touted as a field-defining book. Melanie Yergeau especially liked Siebers' discussion about how architecture and our desire for beautiful buildings reflects our desire for beautiful bodies.
Embodied Rhetorics: Disability in Language and Culture by Professor James C Wilson PhD et al. C.S. Wyatt shares that this book is a good overview and that he especially likes "Am I MS?" and "(Working with) The Rhetoric of Affliction."
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro. This book explores societal views on disability.
Open Your Eyes: Deaf Studies Talking by H-Dirksen L. Bauman (Editor). This book has many Deaf contributors and offers a myriad of valuable insights on the true definition of normalcy.
Recovering Bodies: Illness, Disability, and Life Writing by G. Thomas Couser. Melanie Yergeau relates that Couser describes the ways in which the literary marketplace restricts disability writings into stock and overdetermined narratives, and also in the ways in which people with disabilities (PWD) have begun to *speak* back.

A response from C.S. Wyatt to common disability myths about autism:

It's good to know we [individuals on the autistic spectrum] go against the stereotypes of all being physicists, math savants, or computer geeks. Oh yeah, I came from programming. Still, I think any cultural studies/anthropological views of disabilities is useful and proves we not only aren't stereotypes, but that we have interests beyond whatever it is people are using to define us.

AASPIRE/ASAN: Project Gateway

2009-10-27T09:12:00.001-07:00

Click me to head to the project!

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults.

The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

encourage the inclusion of autistic adults in matters which directly affect them;

include autistic adults as equal partners in research about autism;

answer research questions that are considered relevant by the autistic community;

use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison

Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

Please pass this information along to your friends!

World Autism Interviews: Kate Goldfield/New York

2009-10-20T17:20:00.000-07:00

It's not uncommon for autistic people to face ignorant assumptions and myths about autism from clinicians, community helpers, doctors, psychiatrists, psychologists, and even friends or relatives.

There is a myriad of misinformation about autism circulating throughout worldwide veins. Sometimes the people autistic individuals are counting on most, are capable of damaging those they claim to help, thanks to inexperience, lack of appropriate information, and narrow-mindedness.

It is often through an encounter with prejudice that an autistic self advocate is born.

Kate Goldfield lives in Ballston Spa, New York.

Elesia: Please tell us how you became a self-advocate.

Kate: It was just another day. I was in my junior year of college, six months or so after I had learned that I have Asperger's. I hadn't said much about it to anyone because I found no reason to, and I didn't know if it was the kind of thing people would be receptive to hearing. After all, I was still trying to figure out Asperger's for myself.

Everything changed after an incident at my college library.

One day, I was especially groggy and out of it, as well as overwhelmed. I felt as if I couldn't wake up or focus. The smallest things overstimulated me, such as people's voices or people walking around. I needed a break from my work, so I went into the basement bathroom of my college library. Hardly anyone ever uses it, so it assures the most privacy. I entered a stall and locked it behind me, letting my mind run loose with all of its thoughts and feelings. Some of the things on my mind, I said aloud, as self-dialogue is a big stress reliever for me. If a person entered the bathroom, I immediately stopped talking.

Thoughts came and went so fast that it was overwhelming. Thoughts were pushing at my brain to get out. My thoughts could not be quieted until I said them aloud, or until I reasoned through the problems I was struggling with out loud to myself. Often, I went down to this basement bathroom when I needed to work something out in my head. After spending a few minutes in the bathroom, and working through my thoughts, I always returned to my task.

Though it is weird to talk to yourself, doing so is just one of the many coping mechanisms that an adult with Asperger's may use to better navigate and cope with the world.

On the day of the incident at my college, I heard someone enter the bathroom, so I stopped talking. Ten minutes or so later, I heard the door open, and a woman asked me if I was okay. Used to hearing that question, I said, "Yeah, I'm fine. Just a bit overwhelmed. I'll be fine."

Expecting to be left alone, I was instead asked, "Are you sure?"

The next voice I heard was that of a college security officer asking me to exit the bathroom. I did so, gasping as I realized that the college security was involved.

"Why were you in there so long?" asked the lady standing near the security officer.

"I was just trying to calm myself down. You know...just taking a break." I hesitated before adding, "I have Asperger's Syndrome, and one of the symptoms is severe sensory issues and overload. If I take a few minutes for a time out, I feel better."

The lady who had started this whole incident, turned to the security officer and said, "I'm a psychiatric student at John's Hopkins about to get my degree. She can't have Asperger's because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."

I tried to convince this lady that she was mistaken, and that Asperger's is very different from what she may have learned. I mentioned that people with Asperger's certainly could talk, and often did so quite well. In response, she threw around a bunch of loaded psychiatric terms about emotional instability that obviously impressed and scared the college security officers. In turn, they would no longer listen to me.

"We need to take you to the office and figure out what to do with you," said one of the officers.

"What? I'm supposed to meet someone in five minutes. I have work to do," I said.

"No. You need to come with us."

I was taken to a cavernous gloomy office in the basement of the library that I have never been to. I was questioned for about an hour, about both Asperger's, and my behavior. I was shaking and so overwhelmed that I could barely talk, but I managed to defend myself, even though nothing I said made a difference. Over my head, there was talk of calling the paramedics to escort me to a hospital. Then a member of the Baltimore City Police was called in for reasons I still do not quite understand. I was not yelling at or threatening anyone back in the bathroom. I had simply been talking to myself.

The officers called people I knew to try and make a confirmation, but no one was available. I tried to convince them that I was fine, but again, they would not listen. I was desperate to keep the officers from taking control over me, God forbid send me to a hospital when I was just taking a bathroom break from my sociology homework. An hour later, one of the officers said, "She really does seem fine now. She seems much better." Inside, I rolled my eyes, and asked to be dismissed. Finally, I was given their consent.

Shaken, I left and made my way back to my dorm room to process everything that had happened to me. I met my friend that I was supposed to meet earlier, and told her everything that had happened. She was appalled.

Eventually, I received several heartfelt apologies from both the Residence Life, as well as the Security offices on campus. I never received a letter from the ignorant lady from John's Hopkins who had started the incident, and I often think about writing her a letter.

This situation gave me a desire to communicate the experience of Asperger's to the world. I want to lay it down unequivocally: I am what an adult with Asperger's looks like. Please be aware that we may have different needs than others. Please do not be alarmed if we present behavior that is unfamiliar to you.

Motivated, I wrote an editorial about what Asperger's is, and sent it to the Baltimore Sun. I was stunned a few days later when I received a phone call informing me that my article would be published. The article ran on Thanksgiving Day, and I got more than two dozen email replies with people telling me that they saw their son, daughter, friend, or loved one in the words I wrote. I was stunned by the response, and very happy. I felt validated, and it was wonderful to know that I made a difference.

From there, I was hooked on self-advocacy. I have been invited to speak at two autism conferences in the Northeast. Essays of mine have been published in autism-focused magazines.

I have found my voice; a voice that allows me to educate the world on what being an adult with Asperger's is like. A voice that gives me a sense of meaningfulness and purpose.

I shudder to think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this lady. But who knows, maybe she has read one of my articles. If it weren't for her, I'd never be doing what I love, and so maybe it was a good incident after all.

Elesia: Thank you for sharing your story.

If you've met one autistic person, you've met one autistic person.