I have recently attended a few courses intended for parents of autistic kids. This post is not meant to reflect on any one course or session, but rather it reflects what’s going on in my mind during such events.
So, it usually starts the second I sign up for the course. Have I written it down in my calendar? The exact dates and times? I once didn’t, and forgot about it and missed the first two sessions. Another time, I wrote it down but on the wrong day, and got a phonecall asking where I was. But wasn’t that on tomorrow?!
I am already feeling nervous about this. Will I find the venue? I scope it out the day before, either by foot if it’s close by, or on Google Maps if it’s not. I try to arrive late, but inevitably arrive early. I go sit down in the front, like the swat that I am. Well, it’s actually because my eyesight’s so bad, even with glasses.
Oh, here come the other parents. Mostly moms. They arrive single or in pairs, but immediately gravitate towards each other and start to chat. Quick, stare at my phone, look busy, so nobody will approach me.
Too late. Here comes Autism Mom. It’s the nickname my husband and I gave her as she is the embodiment of one. She was on the last course I did. She keeps turning up at the same ones. And the same Facebook groups. And somehow thinks I’m her friend. She comes and sits next to me. And starts into her tirade about lack of services for our kids, and how she’s heard great things about the GAPS diet. I smile and nod and pray for the course to begin.
I really hope they don’t ask us to introduce ourselves, have some sort of ‘ice breaker’. I don’t want to break the ice. I like having the ice between me and them. And I hope there isn’t an ‘interactive’ component. Reading out phrases on pieces of paper picked out of a bag like a lucky dip. What does that accomplish exactly?
And so, it begins. “children with autism this, children with autism that…” Each “with autism” feels like a bullet to my brain. Would it hurt to say Autistic once in a while? Please, just say the word. Just once. I do hear it eventually, in a video clip, when an autistic person is describing themselves. Oh yes, the obligatory video clip. With poor sound quality and no captions and I just can’t take it in. Even worse is when they try to recreate ‘what it feels like to be autistic’ with those jarring sensory videos that make me dizzy. I don’t need to know what it’s like. And most here will never know.
But, surely, I can’t be the only autistic parent here? We are not addressed directly. Does not sound like we exist. Every single thing is framed around neurotypical parents trying to figure out their autistic children. Like we are an alien species. But, that lady in the far corner, taking notes but not interacting with anyone, I bet she’s one of us. I later find out that she is, indeed, autistic. My radar has not failed me!
And I do need to comment on the note-taking. Some courses give handouts and notebooks. Others promise to email on the presentations. So, why all the note taking. Hate to break it to you all, but we’re not actually in school anymore! I only write down things missing from the presentations. Usually names and email addresses and websites. And I certainly don’t write these down by hand. That’s what the Notes App on our phones are for. You know, technology. Better than painful and illegible handwriting.
Anyway, I can’t afford to waste cognitive facilities on note taking. I’m trying to listen and concentrate. But hard to hear over the sound from the fluorescent lighting. Or when the course takes place in a school and it’s break time and the noise of screaming kids fills the air. Make them stop! But they’re just having fun. I’m getting a headache. And the expert is now talking about sensory difficulties.
And I wish I had brought my sunglasses. But then I’d stand out. My cover would be blown. Best to stim discreetly, bite my nails, pick the skin on my lips. And I’ve lost all feeling in my legs from sitting so still on these hard chairs. And now my head is pounding. And my heart racing. And I hope nobody’s looking at me.
Countdown. It’s nearly over. I want to leave but don’t want folks to see me leave. That’s the problem with not sitting in the back. I try deep breathing. It buys me a few minutes. Now, it’s time for questions from the parents. I bite my lip. I want to stand up and say ‘NO!!’ I want to give advice from an autistic perspective. I want to say’ don’t try to make us conform. You need to change your expectations.’ Because the ‘experts’, those giving the course, are kind-hearted but don’t really know. They are learning, they are trying, but they don’t really know. Like how I can’t know what it’s like to be gay, or black, or a Jew.
And so, ultimately, I go home none the better. I may glean one or two nuggets of gold. Suggestions that may help my family. But, most of it, padding out that new info, is a lot of old news. Because Autism is my special interest. (‘Obsession’ the lady today called it) I have read the books, by both autistics and non-autistics, I have watched the videos, I have thought about it for months and months. And i feel I’m wasting my time on these courses.
I wish I could attend a course designed and delivered by an autistic person. I wish I could have input into such a course. And if I did, I feel I could finally ‘come out’ and take part fully and be included. And, ultimately, that would have the greatest benefit for me and my family.
[image of a black and white photo of the top right hand quadrant of a clock, showing Roman numerals XII to III. The hands show it’s a few minutes past twelve. ]