This is Autism

Everyone has definitions of autism. Professionals define it, advocacy organizations define it (too often in a way that excludes self-advocates), schools and government define it. And these definitions always miss some really, really important elements – they miss the sensory distinctions. They miss how we process emotions and empathy (or they say we don’t have emotions or empathy). And they miss our culture.

Yes, our culture. And our “alive.”

You want to know what autism is?

It is when I visited another autistic and we both sat on the floor across from each other, typing, flapping, gesturing, and pointing. It was when this other autistic brought some stim toys and blankets, threw the blankets over me and gestured at the toys, knowing after a long trip I probably needed some rest. That’s something most neurotypicals can’t pick up on, but another autistic knew immediately.

It was on another trip, with a different autistic, when I was also on the floor, not communicating with words at all, but still seeing, still listening – and having food just appear in front of me, people knowing that’s what I needed right then.

It’s finding others that think like you do. Not just intellectually, but on that more human, basic level. People who carry no expectation (unless they’ve been taught!) that I need to “look them in the eye.” People who understand why I’m stressed out in a certain environment, why I’m calm under my blankets, why I might not be taking care of my own needs (like eating). Mind you, these other people are other autistics, often who have their own difficulties with similar things – but somehow, when able, they are more then willing to help.

Now this is one type of autism – there are many others. Oh, no, not like you might think of high and low functioning or other bogusness. No, there are autistics I can’t relate to, but for different reasons. You see, one thing people would learn from us is that there are different kinds of autistic people, but not different in the sense of IQ, communication, or any of the things that non-autistic people seem to often notice. No, differences at a much more basic level – maybe that autistic IT professional and the non-speaking autistic with full-time support are closer to each other than two autistic IT professionals are!

I’ve seen autistics open their homes, their wallets, their kitchens, and their hearts for me. These are not the actions of people without empathy or human connection. I’ve traveled the world – literally – and met autistics in other countries. We desire a connection.

This isn’t to say life isn’t challenging for anyone. But, it’s life. Life can be beautiful one day and hell the next. For anyone. Anyone can lose a loved one. Anyone can be hurt or abused. Anyone can fail to achieve a goal. But autism isn’t just failure and pain, anymore than humanity is failure and pain. There’s also the joys, including the joy of connection.

The most significant day in my life was the day I married my – autistic – wife. Two autistics in one house. Sometimes I help her, sometimes she helps me. Sometimes we both somehow get through the day having difficulty together, but at least with someone to share it with. She knows me in ways that only someone who has lived as I have, and thinks as I do, could know. It’s beautiful and wonderful and love. I’ll say this: I’m living. Not just existing. But living. Autism is alive. Autism is love. This is autism.

Why I’m Proud of my Community (including our allies!)

This week has been good and bad.

A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.

Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done.  But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.

Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.

See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.

I’m proud that our community did this.

But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:

Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:

Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.

Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).

This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.

But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.

 

(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.

(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”

(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.

I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.

I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.

Evil Autie celebrates 1000 Ausome Things #AutismPositivity2013

I don’t usually go along with the crowd and do things, but today people are blogging about the “ausome” parts of autism. But, the Autism Positivity Project seems pretty cool, and worth breaking my own rules for. See more information at the Flashblog’s page.

That’s probably the first ausome thing – sometimes you need the kid to say, “The emperor is naked!” We often see things differently than others do, and are willing to go against the crowd. Supposedly that’s a deficit, but it’s often a strength too. Too often, leaders end up surrounded by “yes men.” Too often bad decisions could be prevented if only someone would say “NO!!!!”

Another ausome thing is our eye for detail (like how, when I saw the “Ausome Things” Flashblog request, the first thing that stood out in a wall of text was the word “Ausome”). Coworkers used to joke at a previous job that they could pour over a computer screen for hours looking for a bug, but that I would see it instantly. That wasn’t quite true, although sometimes seeing the world differently and being focused on details gave me an advantage in finding the problems. In fact, one of the struggles I’ve had at some jobs is convincing people that if I see a problem, there really is a problem. In the networking world, often badly configured networks seem to sort of work, but “sort of” isn’t the same as “working as they are supposed to work.” I can’t always explain why I know something is wrong, but often with networking, I know something is wrong and know what the fix is. Yet, it can be difficult to try to convince a coworker who expects me to notice problems in the same way he does. Sometimes the problem is obvious to me, just clearly evident. But it’s not to others (I’m sure it works the other way plenty of the time too – hence why we need all types of people). But they don’t see me struggling or working to notice it, so they sometimes think my opinion is unfounded or not based on strong evidence, particularly when I spot something wrong after only a few moments with the networking element and they’ve spent days or years working with it. But, over time, coworkers have learned that, yes, when I notice a problem, it really is broken!

My wife’s ausomeness is her ability to visualize assemblies. Whereas I might make a mechanical device by trial and error (“Oh, that didn’t work. Let me try this…”), she has a comprehensive design in her head – and sees the strong points and weak points of the design and how forces will impact it, long before she lays her hands on the raw materials for the device. In fact, this is so natural to her that she’s sometimes confused when I explain that I can’t see what she’s trying to explain. I’ve lost count of the times she’s told me or a mechanically gifted neighbor, “I wouldn’t do it that way…” and we’ve went ahead and ignored her advice – only to discover later, when it’s much harder to fix, that, yes, she was right. We just couldn’t see what she saw instantly!

That’s the last ausomeness I want to write about today: our uniqueness. Not only are autistic people different from non-autistic people, but we’re also different from each other. While my wife has amazing mechanical visualization abilities, I don’t. We’re all different from each other, and that includes the ausome things.