Whenever someone says that I, or anyone else, doesn’t look autistic, my mind naturally goes to what an autistic person is supposed to look like. Lately I’ve been imagining a swarm of socially impaired zombies, shuffling forward with poor eye contact mumbling “Trains, traaaaiiiins.” It makes me giggle.
There are, of course, some truths behind the clichés, and yes, a lot of aspergics, mostly the male ones, really do like trains. But what you really need to know, and what I’ve been battling with believing since getting my own diagnosis, is that everyone with autism is a person, a different person, and we are as individual as everyone without autism is. Seriously, we can’t even agree on what we’re called. Some people like the term “Autist”; to me that sounds too much like someone with an acquired skill, like a cellist. As though there might be a Royal Academy somewhere that one can attend to become a truly prestigious Autist. I usually refer to myself as Aspie or Aspergic as I feel it has the best chance of explaining my difficulties to someone I need to make aware of them, but the term I’m fondest of is Autie. Probably because it rhymes with naughty.
And so back to looking Autistic. I believe, in my natural state I could look very autistic indeed. I don’t really care for trains, but I gain comfort from pulling my cuffs down to my knuckles, my collar up to my nose and becoming non-verbal. I’m happiest curled in a ball, communicating solely in affirmative or negative grunts. I prefer staring at peoples’ chins or shoulders, or around the room to making eye contact. My curious brain latches onto odd sounds or words spoken in certain accents and I get the urge to repeat them over and over, like rubbing your hand over something soothing and familiar.
But you’ve probably never seen me do these things, certainly not all at once. Because one quality that Auties actually do tend to share is a gift for copying those around us. Those of us who aren’t very severely autistic, especially if not diagnosed at a young age, quickly realise that we’re wrong. That we do things differently, think differently, have different instincts. So we change. We learn to smile and say hi. We learn to answer the greeting “How are you?” with “Fine thanks.” even when it’s not true, and having to say it is confusing and uncomfortable. And basically, that is how everything feels when I’m not curled up and grunting; confusing and uncomfortable.
Which brings us to what I think a lot of Auties deserve to be called; not “Autists”, but “Normalists”. Pretty much every autistic person you interact with has studied day in day out to be able to have that interaction, even if they didn’t know why they had to do it. Having a job, standing at a bus stop, saying “hi” with a smile, is literally their life’s work. It takes every ounce of skill and energy we have to do these things. It takes a lot of love and patience from those close to us. And the less obvious it is to you the harder that person is working. Sometimes the strain of doing it gets too much, and if we don’t know how or are unable to retreat, things start to fall apart. We shout, hit, self-harm, have nervous breakdowns or even attempt suicide.
There’s a particular reason I’m saying this. It’s because my daughter doesn’t look autistic. It may be excused as reassurance, but telling me my daughter doesn’t look autistic, or that she’s acted fine the whole time you’ve seen her, is basically a slap in the face. No, she doesn’t look autistic to the casual observer. She giggles and cuddles and is a truly caring and funny human being. You see this side, only this side because she, at three years old, knows what is expected. She knows just like I do, how to hold herself together, to strain and repress all day to present a normal person to you. And then she lets it out at home, and when she lets it out, Gary and I take the strain from her.
When I’m trying to eat out with her and she crawls under my chair I don’t yell at her, I coax. I don’t do that because I’m too lazy or soft to tell her off, and she doesn’t crawl under my chair because she knows I won’t shout. She crawls under my chair because the act of sitting upright and eating like one of you normal people is too much for her, and she is with me, her ultimate security blanket, so she knows it’s safe to let her guard down. To look autistic.
Could her father and I shout at her? Could we punish her, take things away, teach her that even at home, even with her parents, she has to hide, to strain? Teach her that she is totally alone with her autism and her feelings? Yes, we could. I think the result would either be worse behaviour in all settings or a totally withdrawn child. I know that either way, all the aggression, confusion and isolation would still be there, just inside. If Gary and I made her behave around us and at home our lives would probably be a heck of a lot easier. We could have our evenings back, enjoy each others company. Maybe we could go out as a family without getting those looks that tell us we’re bad parents. And we would have a thoroughly miserable and lonely little girl.
We’ve been more fortunate than a lot of families, in that we are being taken seriously by doctors. We got a referral to a consultant quickly, and from her observations she in turn agreed that Ianthie probably has Pathological Demand Avoidance and borderline autism. I don’t think she’s “borderline”, but frankly, as girls, especially girls with a high IQ, are unusually adept at masking their symptoms I was surprised the doctor saw enough to want to diagnose anything. There are going to be more assessments and tests, including genetic testing. We want a diagnosis so that we can have some help taking all this strain.
What we really need, apart from enough money for a live-in nanny and a housekeeper, is trust. Gary and I need those around us to trust that we are saying our daughter is autistic because she is autistic. We need people to believe us when we say her behaviour is almost unmanageable for us, but that we’re doing what we believe will give Ianthie the best chance of a happy and independent life, so we have to do it. Most of all, when you see a child that doesn’t look autistic, we need you to see past that to the epic battle the three of us have fought for you to be able to see her like that. Gary and I would give literally anything for Ianthie, and we aren’t saying she has developmental and behavioural problems for fun. We don’t know that she will ever live independently. We don’t know if she’ll ever have a family of her own. We don’t know, despite her astronomical IQ, if she will get any qualifications at school. All we can know is that we’re doing our best.
So, when you see Ianthie, or any other autistic child that doesn’t look autistic, remember that she is not normal, she’s a Normalist, and if you really want to comment, just tell us what an awesome job we’re clearly doing.