Thursday, November 7, 2013

The tyranny of indistinguishability: performance.

A consequence of everything being about "children with autism": no one thinks about the adults. They desire desperately to make us indistinguishable from peers (using a very interesting definition) and then as soon as we meet that goal, we're allbetternow. No one spares a thought for the adults who, years ago, were declared to have made the goal, hit the holy grail of "normal enough".

Indistinguishability isn't a moment though. It is an unending job, and it gets more and more complex as you age. Demands keep increasing: academic demands, including those that require figurative language and abstract thinking, increase. Time management demands increase. As we grow up, we are expected to take on more responsibilities at home and eventually move into our own homes. We're expected to get a job, do that job, maintain our own homes, all at once.

And maintain that visage of normal. We always say autism is developmental delay, not developmental stasis-and indistinguishability cannot be static either. The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that'd be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec.

When I was 6, I could play a board game with only slightly more meltdown potential than the other little kids. I could make reasonable, if messy, facsimiles of the art projects we did for every season in my first grade class. In structured activities-and so much of a 6 year old's life is structured-I could kind of pass. I was on the sloppy, reactive, and odd side of the bell curve, but I was on it.

At 30? Board games have largely given way to to unstructured conversations, where turn taking is marked not by handing over the dice but by nonverbal cues. The length of turns and what a turn includes varies moment to moment. Talking too much, not enough, oddly? Gets noticed. Not catching nuance? It shows. Echolalia? Stands out. Auditory processing problems are interpreted as not caring. The skills that make you slide by in first grade are not enough in adulthood. There's nowhere to hide.

If there is anything I learned from How To Be A Real Person In 1000 Data Sheets, it's that hiding is essential. Being noticed is the end of the world. When I gave a shit about my safety & about the people who taught me this--which was everyone in my life in my youth, as that's how these things tend to work--I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.

Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything--eat, sleep, move--because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can't!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.

So much energy was put into being a real person that I didn't have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support nerds, all my learning bandwidth was diverted into running my shitty, self defeating emulator. My shitty shitty emulator did not help me do well in school. It is so stilted that it actively impeded my ability to socialize. But the whole "normalcy as top priority" stuck, even as my mother was hitting me for my grades or the disaster that was my room.

Because it was a condition of being treated as an almost person? I thought everyone worked this hard. I didn't know it was effortless for most people. I didn't understand how they did it and everything else. I didn't know why society picked this as it's normal, as the standard. The refrain of my childhood, "just be normal!" ingrained itself that far. They had me convinced that everyone has to choose that, that everyone is putting in all that effort all the time.

I was 20 when someone finally told me that I could be a kickass autistic or a shitty fake NT. It hadn't completely occurred to me that it was an option! It had to be an option shortly thereafter, because everything went to hell at once, but "be your true self" had never even crossed my mind. It took a while to find my true self. It takes effort to make my true self stand tall and proud.

Real me has friends--something I was told that I had to keep the act going to make happen. Real me has a bit of a job. Real me is getting good grades in school instead of spending energy on figuring out all sorts of interpersonal things. Real me functions better, albeit weirdly, because real me acknowledges and acommodates support needs.

Indistinguishability is tyrannical, because once you achieve it, it is the goal of every moment-to not be distinguished. That is no way to live a life. That actually isn't a good goal at all. If the best prognosis you can possibly get is "will spend life hiding and exhausted", you need to rethink your plans for that individual. Hiding is no way to live.


Julie said...

I keep reading and re-reading this post. So many quotables. Thank you. Just, thank you.

Astrid said...

Thanks so much for writing this. I remember, as I was convincing my parents to go to my autism assessment with me, my father said: "Go write an essay on all the problems in high school and I'll show you 99% of your classmates exxperience them." It was so liberating to find out after all that, no, they don't. I so vividly remember the tyranny of indistinguishability and I still fight it a lot of het time now that I'm an adult in an institution where the staff have not wored with (m)any autistics. I want to be real me, not some crappy emulator of normalcy.

Bev said...

Thank you for this lovely post. It means so much to so many people. I hope my children will feel confident to be their wonderful selves - "quirks" and all. I would never want them to try to be someone else.

Dr. B said...

Thanks for posting this article. It helps me to understand life from the perspective of my "normal enough" child with PDD, and helps me see that I have some of these traits myself. The latter is significant because I have never been evaluated for ASD. I think it is important for us to help our ASD children accept their shortcomings even as we celebrate their gifts (my son does well in math and is musically talented: plays several instruments and has perfect pitch). He and I talked about some of these kinds of things earlier today.

Erin Branscome said...

Thank you so much for writing this.

It's hard for me to put into words all that I'm feeling right now...I don't think I've ever read a more perfect description of both my youth and my current, day-to-day existence. I've never heard someone articulate these experiences and feelings, until reading this, today; I've always felt like I was the only one, and that I must therefore be profoundly broken. I got goosebumps as I read through this, and then had to read it again, and again. I linked my friends and family to this post and told them: "This is what I've been trying to tell you! This is what I've been trying to explain! This is why I'm always so anxious, and sad, and--above all--exhausted."

I'm 27, and I was only diagnosed with Aspergers in the last year. I'm just starting to find resources, books, other blogs. It's been a huge relief.

(Side note: When I came home, the day I learned of my diagnosis, still stunned, and told my mom what the doctor had said, my mother's response floored me. She said, "Oh, I've known that for years."

"Why didn't you tell me?!" I cried.

"What difference does it make?" she asked. I didn't say anything then--and I still won't, because I don't want to hurt her--but now I could answer, honestly, "My life.")

Your blog is wonderful. I'm in tears as I've been reading through your entries, good tears; I feel like I'm shedding a huge weight with each one. Thank you for your writing. Thank you for understanding.

Unknown said...

A consequence of everything being about "children with autism": no one thinks about the adults.

Finally, someone else gets this!

Unknown said...

A consequence of everything being about "children with autism": no one thinks about the adults.

Finally, someone else gets this!

Unknown said...

I read your entire Autreat story, and completely empathize. I get so mad at how most NTs cannot figure out loud sounds can cause pain and suffering for some people! The gaslighting reminded me of how I was mistreated in high school in Special Ed.

Seriously I just want to scream at Jim and Cara that they could've been accused of collaborating in murder by giving you a seizure. I'll never get how NTs can be so ignorant about this. It's not rocket science!

Anonymous said...

My partner and I often joke that I'm not a "defective human being". I'm a perfectly functional... something else.

I understand that dehumanization is a real issue and it affects the autistic community disproportionately, but for me, stepping away from the pressure to act like a "normal human being" and actively embracing the idea that I wasn't really helped me make progress against my self-loathing.

I mean... humans... they aren't all that great.

Samantha Shanti said...

Again, wow, so much of my life here in a page, the end of which was the beginning of real life. I'm 51, was finally correctly diagnosed two years ago, and after a period of grieving and mourning, I am learning to live again. Thank you!