Saturday, March 31, 2012

To My Beloved Autistic Community on Autism Acceptance Day 2012

It’s the beginning of Autism Acceptance Month. (Autism Acceptance Day is officially April 2).

Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are "typical" just because they can't see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.
You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you. If stimming helps you get through the day, you have the right to do it. If making eye contact is a goal of yours, go for it! You get to choose. When others choose for you (in the case of children or in some support roles) let it be not in the vain attempt to “normalize” you, but to help you be your best, Autistic, self. This is no different (speaking in my parental role) from helping any child learn and grow to be the best person possible. This is no different (speaking as an Autistic adult and former Autistic child) from learning at a pace that is both challenging and not way outside the “envelope” of what works for you. 

Autism Acceptance Day is for: Autistic people reading this blog, Autistic people who can’t read this blog, Autistic people who will never read this blog but whose lives might be impacted by those around them learning to embrace and cherish all of who they are. Autism Acceptance Day is not limited to acceptance for the “high end” (whatever that is) of the spectrum. Autism Acceptance Day is for the Autistic children in the JRC (and let’s not forget other children who are there as well). Autism Acceptance Day is for the Autistic adults (and others with disabilities) in institutions and for their family members who are working for the change that will allow them to live in their communities with appropriate supports. Since it always gets brought up, Autism Acceptance Day is for adults who wear diapers, don’t speak, and smear feces. Autism Acceptance Day is for the children who get put into restraint and seclusion when school should be safe. Autism Acceptance Day is for the kids who get bullied; and it’s for the toddlers whose parents are already trying to prevent them from showing any Autistic characteristics. Autism Acceptance Day is for kids who spend 25-40 hours a week doing ABA instead of getting some time off to be kids. Autism Acceptance Day is even for Autistics who don’t want to be Autistic (they need feel no pressure to celebrate the day!)

Autism Acceptance Day is for the Autistic activists who work hard to bring a gleam of understanding to beleaguered parents who have heard one too many versions of the “horrible news” story. Autism Acceptance Day is for Autistic parents who are raising our children (Autistic or not) in the face of other people's doubts and our challenges. Autism Acceptance Day is for our non-autistic allies, remembering that we and we alone get to determine who our allies are , who support our right to be the Autistic people we actually are and always will be. Autism Acceptance Day is for non-autistic parents who try to understand their children, even if they don't really, and strive to make the world a better, accepting, place for them. 
Autism Acceptance Day is for Autistic children, and Autistic adults, who might be: sad, afraid, confused, worried, anxious, happy, ecstatic, joyous, and every other condition that is part and parcel of the life and world of any human being.

Happy Autism Acceptance Day!

(April 2 for Autism Acceptance Day, the entire month for Autism Acceptance Month)

Autism "Awareness" That Hurts Autistics

by Nadine Silber and Jane Strauss

I know that people have good intentions with the whole Autism Awareness month thing but well, the thing is that, a lot of people, our family members included, don't really like being treated like a "cause." It is also very hurtful to many Autistic people to be described as part of an "epidemic" and have Autism be described as a parent's "worst nightmare." I can't even have the TV on in my house right now. I don't want Rafi, who is being raised to like himself and be okay with his differences, while working around his challenges, to hear other people describe him as a tragedy. I am teaching them about the misconceptions, and about how many people do not understand us, but those words are so hurtful. I'm not sure why people don't realize that these things are hurtful - I guess they just are not able to put themselves in our places. (While they say that it is we autistics who cannot put ourselves in others' places- anyone get my confusion with this?) 

This is all I ask - before you light up blue, or cover your car in puzzle ribbons or comment publicly on the "epidemic" please take a moment and think about how it might feel if you were a young person who just would like to be treated nicely and be accepted and your parent was doing that stuff. Or better yet, talk to your kid about it. Even if they can't answer it does not mean they don't understand. 

Autism awareness should start with being aware of the feelings of Autistic people, in my opinion at least. Thanks for the good intentions though - I realize that most people do it out of love. I'm not judging anyone - I honestly just think that most people haven't thought it out that well. I do also realize that to get public and private money you have to be dramatic but I think that the effect in the end may be that you unintentionally cause society to devalue Autistic people which would be just as bad as not having any funding. Anyway, please take the money you might spend on the blue light bulbs and the puzzle ribbons and put it away for your child's future. Thank you.

Thursday, March 29, 2012

Autism Acceptance Day on Autism Women's Network

This post by Sharon daVanport, April's Second Annual Autism Acceptance Event Making a Difference!, just in. There are links to the radio show and the Facebook event and community. Links to the two interviewers, Dana Commandatore and Tammy Klein, can be found. Sharon says: "Within the autism community, April has always been known for it's one buzz word, "awareness." Not anymore."

Autism Acceptance Day on Autism Women's Network Radio

Autism Acceptance Day and Month will be featured on Autism Women's Network blogtalkradio. The interviewers are Dana Commandatore of Rethinking Autism and Tammy Klein.

Monday, March 26, 2012

Autism Acceptance Day Blogaround

Announcing the Autism Acceptance Day and Month blogaround. It's a bit late, but we might get more posts, reprints, and original thoughts for this blog, as well as you having something to put on your own blog (if you were thinking about doing one and didn't have enough motivation!) if we start now. 

Blog entries do not have to be writing. They do not have to be traditional writing. Poetry is great! YouTube posts, posts on other types of social media are accepted. Things that are in words but don't really look like sentences are awesome! 

Entries don't have to be long, full of "expertise," etc. Thoughts about what Autism Acceptance (in the sense of full acceptance, not in the sense of "I accept you but I hate your autism") means to you. 

If you would like your blog to be featured on a particular day in April, let us know and we will make a calendar with names and dates of entries. If you simply want your blog linked, contact us at the email address below.

Autism Acceptance Day sites that are live and available for submissions to be posted are:

Twitter: @AutismAcceptDay

YouTube: We have a You Tube channel but as of yet it has one test video. Please consider making or importing a video to the YouTube site! Video can be an important way of getting your message of Autism Acceptance out.

Send submissions to autismacceptanceday1 @gmail dot com (substitute the dot and close up the spaces!) with your name and a link to your blog or site. We can do this throughout the entire month of April. 

Autism Acceptance Day and Month Updates

It's exciting to see Autism Acceptance Day catching on both at regional and national levels.

The Autistic Self Advocacy Network features Autism Acceptance Day and Month on the new (awesome!) website.  ASAN's post is here: Autism Acceptance Events and Their HistoryASAN will be running autism acceptance themed blog posts over the course of the month of April from Autistic adults, family members and other allies.

The   Autism Women's Network  blog radio show on March 30 will feature Autism Acceptance Day. Guest-hosts Dana Commandatore of Rethinking Autism and Self-Advocate, Tammy Klein will be the hosts.

Steve Silberman's blog, NeuroTribes, at PLoSis going to do a major post for Autism Acceptance Day on April 2 with lots of input from self-advocates and parents.

A series of posts about the evolution from autism "awareness" to autism acceptance will be featured under  Ariane Zurcher's posts at Huffington Post. Ariane's first post is Autism "Awareness".

April will be Autism Acceptance Month at Thinking Person's Guide to Autism (TPGA). "Accordingly, we will be profiling autistic people each day. We would like to invite you and/or your child to participate, because we believe you have many important things to say or share about autism and being autistic.”

Sunday, March 25, 2012

On Passing, Overcompensating, and Disability

Original post by Rachel Cohen-Rottenberg is at

Lately, I’ve been troubled by articles in the New York Times and The Daily Beast that imply that people with Asperger’s are not on the autism spectrum, but are merely shy or quirky. I’m not going to get into discussing the specific content of the articles, because Emily Willingham has already done a brilliant critique of both pieces.
What I want to address, from a different perspective, is the idea that anyone who “passes” as non-autistic for some portion of their lives (and by “passing” I mean “acting in a way that doesn’t look like someone else’s autism stereotype”) can’t possibly be autistic. This line of reasoning is so old and hackneyed that it’s rather wearying to keep speaking to it — mainly because it’s difficult to know exactly how. If I start describing all my difficulties for someone asking me to “prove” it, I’m blowing my privacy and giving away my power; after all, if I assert a disability identity, I certainly shouldn’t have to explain how I came by it. Besides, the whole act of explaining is a fool’s errand, because in the discourse of autism, if I can explain what autism feels like for me, I can’t be autistic.
I’d been rather stuck in this quandary for some time, and then yesterday, I was reading Tobin Siebers’ Disability Theory, and I stumbled across a passage that was, in a word, life-changing. It touches upon the ways that the late Irving Zola adapted to living with the fatiguing effects of post-polio syndrome:
“Piqued at continuing to inconvenience myself,” Irving Zola writes, “I began to regularly use a wheelchair” for excursions to the airport. “I thought that the only surprise I’d encounter would be the dubious glances of other passengers, when after reaching my destination, I would rise unassisted and walk briskly away.” (205). Zola is able to make his way through the airport at the beginning and end of trips, but the overuse of energy may mean that he will not have enough strength later in the day or the next day to meet his obligations. He turns to the wheelchair because traveling requires overcompensation, and people with disabilities are never more disabled than when they are overcompensating. “Just because an individual can do something physical,” Zola argues, “does not mean that he should (232).” (Siebers 107)
Pause a moment to take in the key statement in this passage:
People with disabilities are never more disabled than when they are overcompensating.
For so many of us on the spectrum who can “pass” to one degree or another, especially those of us who were diagnosed in mid-life, overcompensating is how we have lived our lives. For most of my life, I struggled to hear people in noisy places rather than simply blocking my ears and easing the impact of noise on my nervous system — the equivalent of Zola using a wheelchair to get through an airport. I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech. I smiled politely in conversations that bored me to death while struggling just to keep up with the words, and I said all the “right” things in response — or did I? I was gracious to people who recognized my difference despite all my spectacular attempts to hide it, and who drew away from me because I wasn’t like them. I spent most of my childhood and young adulthood learning social rules, only to find that they only went so far, and then I kept trying doggedly to make them work for me anyway. And I did all of these things, every day, for decades, until I was exhausted beyond most people’s comprehension.
I overcompensated wildly to do all the thing that “normal” people are supposed to do, and now that I’ve done them, I’m told that I must be “normal.”
I realize now that those who say such things don’t simply misunderstand autism. They misunderstand disability. They are wholly unaware of the amount of overcompensation we must do just to keep up with a world made for able-bodied people.
Let’s get this straight: Overcompensation is not an indicator of normalcy. It’s an indicator of disability. And the oddest part of a distinctively odd life is that many of us have been disabled from birth without knowing it because we were so good at overcompensating. We are rarely talked about in disability circles, where one hears of two separate groups: Those who were born disabled, and those who became disabled as the result of illness or injury. Always in these representations, those who were born disabled tend to have an easier time with disability identity than those who became disabled later on and have to deal with the disjunction of past and present selves. But where do we late-diagnosed folks fit into this rendering? We are disabled from birth, but we didn’t know it until later. And because we didn’t know it all those years, and just lived our lives overcompensating with every breath, we are told that we are not disabled now and that we never were.
Many of us get weary answering the doubters, because there is no clear paradigm for addressing our particular paths. But overcompensation is a huge part of understanding our experience of disability and disability identity. I thank God that I gave myself the permission to adapt, to rest, and to work around my disabilities before I exhausted myself any further. All of those actions — overcompensating, adapting, and resting — are signs that I am a disabled person, appearances notwithstanding.
Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.
© 2012 by Rachel Cohen-Rottenberg