Want to know about autism? Ask someone autistic!

This is a crucial moment for the autism branch of the civil rights movement.  We have more visibility and momentum right now than we have ever had before. 

In the last couple of weeks, there have been a remarkable number of essential publications.  We can make a difference in how autistic people are perceived in the media by supporting them. 

Please take as much time as you can in the next few days and read as much of the material in this post as possible.  I've decided to put them together because I want to emphasize their collective importance.  Try to visit each of these links.  Like, share, comment.  Let people know that this is the sort of coverage of autism you want to see.  Let these stories change the way you think about us.

We are at a moment when the narrative that the mainstream press tells about people with autism can change in a huge way.  I know that because USA Today picked up a story from the Indianapolis Star about adults with autism that included Ari Ne'eman, the president of the Autistic Self-Advocacy Network.

In the story, Shari Rudavsky explores the growing movement to view autism as a condition that can have advantages as well as disadvantages, and the desire of autistic people to play a greater role in policy that concerns us:

Giving those who have autism a voice in the debate is critical, said Ari Ne'eman, the group's president and a founder. Discussing treatment and research priorities without listening to those with autism would be like allowing men to run the women's rights movement, he said.

"Frankly the national conversation in this country has been dominated by parents and professionals," Ne'eman said. "They have a valuable voice, but it's not the only voice out there."

Less than 1 percent of research funds go to support services for the needs of adults with autism, he said.

She references Laurence Mottron's remarkable commentary for Nature, which is clearly a game-changer in terms of how the press is thinking about autistic people.  Nature is now allowing free access to the article, and you must read the entire thing.

A sample:

Too often, employers don't realize what autistics are capable of, and assign them repetitive, almost menial tasks. But I believe that most are willing and capable of making sophisticated contributions to society, if they have the right environment. Sometimes the hardest part is finding the right job — but organizations are now arising to address this problem. For example, Aspiritech, a non-profit organization based in Highland Park, Illinois, places people who have autism (mainly Asperger's syndrome) in jobs testing software (http://www.aspiritech.org). The Danish company Specialisterne has helped more than 170 autistics obtain jobs since 2004. Its parent company, the Specialist People Foundation, aims to connect one million autistic people with meaningful work (http://www.specialistpeople.com).

Many autistics, I believe, are suited for academic science. From a young age, they may be interested in information and structures, such as numbers, letters, mechanisms and geometrical patterns — the basis of scientific thinking⁹. Their intense focus can lead them to become self-taught experts in scientific topics. Dawson, for example, does not have a scientific degree, but she has learned and produced enough in a few years of reading neuroscience papers to conduct certain types of research. At this point, she deserves a PhD.

In addition to his comments in Rudavsky's article and the piece he wrote for Austistics Speaking Day on autism and Community, Ari also discussed his opposition to "Death with Dignity" laws on Dr. Oz's website:

How can choosing to die ever be a truly voluntary choice in a society that fails to provide life with dignity for disabled Americans?

If the only alternative to death offered to those who require assistance is poverty and segregation, we are not providing people with meaningful choices. Seniors and disabled Americans who require assistance in activities of daily living must often spend their assets and limit their income in order to qualify for the Medicaid coverage which will pay for their long-term services and support needs. Once they qualify, this enforced poverty is compounded by rules that make it difficult, if not impossible, to get services in the community, forcing hundreds of thousands into nursing homes and institutions, where loss of autonomy is a given. This, not illness, is why people make the choice to die.

You can also watch Ari discussing these issues here and here.

But the most significant publication that Ari has been involved with lately is ASAN's Navigating College project.  This handbook for college students, which can be ordered for purchase here or downloaded for free here, is essential reading for all autistic students in high school and college, as well as their parents.  Adults who are long past college age will also find much to enjoy and think about here. I cannot recommend it highly enough.

ASAN's 5 Year Anniversary Celebration is November 16.  Kathryn Bjornstadt and Corina Becker will be honored for their creation of Autistics Speaking Day.  Please support their efforts as well by continuing to read as many of this year's submissions as possible. And please support the individual writers as well, by continuing to visit the ones you learn from.

I continue to learn, and laugh by visiting OWL.

One final remarkable piece of writing that I want to make sure you are aware of.  It comes from thAutcast friend Beth Arky and is an examination of sensory processing issues for parents:

Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people's brains can't do what most people take for granted: process all the information coming in through seven—not the traditional five—senses to provide a clear picture of what's happening both internally and externally.

Along with touch, hearing, taste, smell and sight, Dr. Ayres added the "internal" senses of body awareness (proprioception) and movement (vestibular). When the brain can't synthesize all this information coming in simultaneously, "It's like a traffic jam in your head," Peske says, "with conflicting signals quickly coming from all directions, so that you don't know how to make sense of it all."

So--- I'm off for the day. 

You've got reading to do.

I do not believe there is anyone who understands the needs of the autism community better than Ari Ne'eman, the president of the Autistic Self-Advocy network.  In recognition of Autistics Speaking Day, Steve Silberman is hosting Ari at his blog.

The piece that he has written asks one of the most important and most painful questions that all people with autism need to face, both as a community and as individuals:

In the best of all possible worlds we can create, we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do. We will still frequently face assumptions and stereotypes that require us to work twice as hard for the same results.

So, what can we do when our best efforts to change the world we live in are simply not enough? What salvation exists for us, when our lives are still more difficult, even when we do get the supports and accommodations we want?

What can we do?  We can support each other:

As we work to make the world better, we can provide ourselves with a place where we feel safe and understood, even if we don’t yet feel that way in the broader society. Every time we speak up about what being Autistic means to us as opposed to those who speak on our behalf, we can empower other Autistic people to do the same thing. Every time one of us comes out of the closet in a place where people don’t expect people with our kind of brain to be, we carve out a little bit more cultural space that we can claim for our community. What if the next generation of Autistic people grew up with the idea of Autistic community and culture an ever-present factor in their lives? What if we took our individual experiences and turned them into a collective narrative, as so many other minority groups have done across history? What if we knew, that even when life was hard and the world at large didn’t understand, that we would always have the chance to connect with those of us who have gone through the same struggles?

Please read the whole thing.

Ari Ne'eman speaking at Syracuse University (watch and read his speech here).

Success on the Spectrum:

This conference specifically addresses the needs of Asperger’s and High Functioning Autistic adults. Through presentations by adults on the autism spectrum and professionals in the field, an autism film presentation led by the filmmaker and breakout sessions, the goal of the conference is to offer options for living, provide role models for success, and inform individuals, families and professionals about living with autism.

On Saturday, October 15, I will be interviewing Zev Glassenberg and Justin Kanew of TV's The Amazing Race as part of a conference being put on by AASCEND (the Autism Asperger Spectrum Coalition for Education, Networking, and Development).  I hope that people who are in or near San Francisco will come to the conference, the highpoint of which promises to be the keynote address from Ari Ne'eman.

Ari is the president of the Autistic Self-Advocacy Network and is the only openly autistic person who has ever gotten a presidential appointment.  He is one of the most intelligent and eloquent advocates for people with autism there has ever been.

Zev has Aspergers and Justin is neurotypical.  Our discussion will focus on what it takes to make and maintain strong friendships between people who have autism, and those who don't. We'll also talk about what the experience of being on two seasons of a reality TV show was like for someone on the spectrum.

Watch Zev and Justin's audition tape for The Amazing Race

In addition to talking with Zev and Justin, I will be leading a session on bullying and conflict resolution.  Filmmaker William Davenport will be previewing his documentary about autistic adults called Too Sane for this World.  Other sessions will concern employment, education, and relationships for adults with autism.

Click here to read more and to register.

CEUs are available, and admission is on a sliding scale for those for are on the spectrum and have low income.

Please come if you can-- and if you do come, and you can handle it, please say hi to me.

In my last message regarding the dialogue series that The Thinking Person's Guide to Autism is doing between a parent and two self-advocates, (I explain the whole thing here), I made a notable and deliberate omission.

I wrote this to Robert Rummel-Hudson, after explaining that he might be asking things of people with autism that are impossible for us:

You cannot be expected to know these things.  You don't know a lot about autism.  But there are several NT people who have followed this closely, who do know a lot about autism, who did not point out to you that you keep asking things that might be impossible for the other person to do. 

And I wondered, what's the point of knowing about the communicative challenges that people with autism face if you don't use that knowledge in a situation like this?  Why was no one NT giving you the information about autism you needed?

Because I had been so aggressive with Robert in my first piece about him, it was important to me to give him as much space as possible to listen.  But I knew that the above was not true.  I knew that Shannon Des Roches Rosa had written a piece that did exactly those things, and that Robert had at least been asked to read it. 

Shannon's piece is really amazing, and it's here.

Please, please, please, please read it if you have not done so.  And visit all of the links-- every one is worth the time.  Here's a taste:

If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:

My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.

It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

This is exactly what I want to say, from the point of view of someone who can say it in a way that will make it easier for parents to listen than I can.  This here is another long piece, and some of it is going to get sort of uncomfortable for some of you.  I would much rather than you invest the time in reading Shannon's post than the rest of this  That's not to say that I do not want very much for you to read and understand every word  that I have written-- I've worked hard and it's important to me-- but you will probably understand Shannon better.  And her tone on this is pitch perfect-- better than mine, or anyone else I have ever read.  

So--

Please read "On Parents Listening to Self-Advocates" by Shannon Des Roches Rosa on her blog Squidalicious.  Then come back here and read of the rest of this when you have time.

Click here to continue.

One of the things that inspired this series of articles on privilege was seeing the movie The Help.  I've already written about how much it bothered me that the movie, which I enjoyed, depicted a cartoon version of racism that nobody sane would see themselves in.  I didn't talk about how unrealistic it was that all of the African American characters seemed to believe that they should be treated equally.  None of them showed any evidence that they had internalized the message that they deserved to be treated as property.  None of them thought that white people really were smarter than them, and that it would be better to leave things as they were.  

Leaving out that part simplifies the story, and it might make the characters easier to relate to, but the most terrible thing about bigotry, and the hardest to admit, is that it makes the people who are its subjects believe that they are worse than the people who despise them.

Another inspiration for this series was the ruckus surrounding a piece that parent advocate Robert Rummel-Hudson wrote about bigoted language in the movie The Change Up.  Zoe, an autistic self-advocate complained about Robert's piece, and Robert and a bunch of other parents descended on Zoe with such force that Ari Ne'eman felt the need to call others to rally around.

And Robert treated Ari, who is the only openly autistic person ever to receive a presidential appointment, and all of the other self-advocates who were angry with him, like angry trolls.  And other parent advocates seemed to me to offer Robert nothing but support.

This made me angry enough that I wrote this.

This week, The Thinking Person's Guide to Autism is hosting a series of letters between Zoe, Robert, and Ari.  Zoe wrote the first letter, which was published today, and which you should read. 

This is my loose and lengthy response to it.

"I just think I'm a problem."

An autistic teenager said that to me after the bullying he was undergoing at his school became so bad that his family withdrew him for homeschooling.  He knew the school was a problem, and he knew the way other kids treated him was a problem.  But he also thought that he himself was a problem.  And that breaks my heart.

And it's why it matters to me that parents of kids with autism learn to understand and respect autistic people.

Click here to keep reading.