Hang on, I’m different

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In my entire road towards an autism diagnosis, it seemed a bit strange that I’d only talked to autistic bloggers, through blog posts and comments and email. On top of that, the majority of those bloggers came from the US, the UK, and Australia. Aspie Story and Blogging Astrid were the only fellow Dutchies I’d found so far. I still hadn’t met a single autistic adult in person.

So when my psychiatrist offered me the chance to participate in a series of group sessions for autistic adults to learn more about autism, I thought that would be a pretty good idea. Even though the session subjects seemed to cover a lot of ground that I was already familiar with, I was looking forward to meeting other Dutch people on the spectrum.

The group consisted of me and three other women. I won’t go into details to respect their privacy, but what really stood out for me was the reaction when I told the group about my own experiences in coming to terms with autism, about wanting to be autistic because it was the only thing that felt like all my experiences finally made some sense. About redirecting my energy and efforts towards things that would help me cope, instead of things that would make me appear normal. Allowing myself to be more visibly autistic.

At those last words, the entire group gasped in shock.

I’m not joking. I was the only one there who thought it wasn’t actually all that bad to be stimming in public.

Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I’m not actually autistic?” Looking for things that would prove they weren’t doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.

It was heartbreaking. It was exhausting.

So naturally, I decided to attend another networking group for autistic adults in the evening.

Yeah. That bit where I talked about learning how to redirect my energy and efforts to cope? I was lying. I’m used to a lifetime of pushing myself to do things. To push through the exhaustion. So of course it made sense to go to the evening gathering as well. Because autistic people, right? I can be myself there, right?

Wrong.

There was a pub quiz. People told me, like they always do at pub quizzes, “How do you know all that stuff?”, with the that-is-SO-not-normal look in their eyes that I recognise so well. I had my Tangle with me and people asked why I was constantly fiddling with it. People made remarks about how nice it was that this evening was just for high-functioning people and then looked at me and noticed me rocking. Unapologetically. Smiling. And I could see them judge me. Rocking is for Rain Man types.

In a gathering of autistic people who all tried to outdo each other in how high functioning they were, I talked about going non-verbal, and how emotions often feel overwhelming, and how hard it is to take good care of myself by eating on time and keeping my house clean. I made them laugh and nod in recognition. I talked about the energy and frustration it costs to pass for non-autistic, and why. I talked about not passing even when I try so hard. I talked about all the things that I read on all the blogs I’d been reading since the start of my diagnosis.

And in the middle of a discussion about high functioning and low functioning labels, and how maybe we should look at what a person is actually capable of, one of them said to me that maybe I needed a time-out to calm down, because I was rocking back and forth so much. And when I said I was just focusing on the conversation, and not feeling anxious at all, he didn’t believe me.

I still can’t truly come to terms with the fact that this happened. It happened. In a group of autistic people. It was just so entirely different from the autistic community I had experienced so far. The online blogging community. The community I’d taken to be… well, NORMAL. With their acceptance. The explanations that made so much sense. The empathy.

What I’d taken to be normal for being among our own.

In reality, the blogging community – that I accidentally stumbled upon when researching ways to get diagnosed as an adult  – was completely different from the real life community that I’d hoped to find. And it made me realise. My ENTIRE perception of autism as something that is intrinsically part of me, with the good and the bad, the meltdowns and the laughter, has been shaped by autistic adults who write from a place of acceptance.

What a difference that makes.

Acceptance has made me different.

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High and low

People, especially medical professionals, are very fond of saying that real autism is nothing at all like how it’s depicted in Rain Man, the famous 1988 film with Tom Cruise and Dustin Hoffman.

Guess what? I disagree.

In this clip, Ray (Dustin Hoffman) is trying to explain to his brother Charlie (Tom Cruise) why he’s not comfortable wearing the pair of underwear his brother gave him. He always wears boxer shorts and these are Hanes. They’re too tight. They’re not comfortable. So he didn’t put them on. He tries to explain which kind of underwear he prefers, but gets stuck on saying which ones he always buys, the boxer shorts at K-Mart. And so Charlie ends up screaming at him that it doesn’t matter where he buys his underwear. “What difference does it make?! UNDERWEAR IS UNDERWEAR!”

No it isn’t. Even neurotypical people have their preferences. Some people can’t stand boxer shorts. Some people hate lacey knickers. Some people prefer cotton, others prefer synthetic fibers which have more stretch. Loose or tight, sexy or functional. We’ve all tried out different types and settled onto something we like to wear.

The difference between autistic people and non-autistic people is that deviating from our preferences is really hard for many of us. Either it’s because our routine gets interrupted, which means we need some time adapting to the new situation. Or our sensory processing difficulties make it impossible to think of anything but the unpleasantness of this strange fabric against our skins. It’s like having an itch you can’t scratch. There comes a point where you can’t think of anything else, let alone focus on what someone else is saying.

And when you’re speaking a different language, when you don’t know the “normal” way of explaining this, you get accused of making a big fuss about nothing, like Ray.

That’s why I actually recognise so much about this scene. This is a fairly spot-on example of what autistic people deal with every day, down to the anger and frustration of the neurotypical people around them. Of course it’s fictionalised and overcharged, because hey, it still has to be entertainment. But it’s not as inaccurate as the medical professionals often claim it is.

Maybe because Ray is visibly autistic. He’s what is often referred to as low functioning. And low functioning is bad. It gets you institutionalised and treated like a child, incapable of making rational decisions.

Guess what? I can be low functioning too.

Other people will say I’m not at all like Rain Man. I own my own house. I work 40 hours a week. I have a higher income than most people I know. I don’t receive any government assistance or disability benefits. I go to parties and socialise with coworkers and do my own grocery shopping and meet up with friends for drinks and even go on holiday by myself. That’s so high functioning that nobody believes me when I say I am autistic.

I will say that I am like Rain Man. That is why I posted a video of me being nearly non-verbal. That is why I showed how much trouble I have keeping my house clean. That is why I wrote an angry post about peeing myself in public.

Triplets eating lunch on a couch

We are alike © Msphotographic – Dreamstime.com

I am both. It depends on the activity (I’m crap at paying bills, I’m good with shopping on a budget). It depends on circumstances (I’m fine on the phone when it’s work related, I try to postpone personal phone calls as long as possible). It depends on how much I’ve forced myself to go beyond my comfort zone lately. Functioning on a neurotypical level takes a lot of effort for me, which means I run out of spoons faster than you’d expect.

So if I can be both, what exactly do high or low functioning labels mean? Have we really looked at a person’s strengths before labelling them low functioning? Or do we just look at the obvious symptoms that set them apart from neurotypical people?

Do we judge people only on either being visibly or invisibly autistic?

Guess what? I think the answer to that last question is yes. And that is why I reject functioning labels. Because it says nothing about my functioning. It only describes what others think of me.

If you know of any other insightful posts on this subject, please let me know in the comments! Shameless self-promotion is allowed as well!