After writing this post about when to tell a child they’re autistic a few weeks back, it occurred to me I didn’t really know how much Tyger knew and/or understood about autism. Bear’s still a bit young, really, but given how many conversations I’ve had with Tyger on the subject I was curious.
Last week Tyger made a comment after he’d complained about a strong smell that it, ‘is because of my autism.’
Given that, I thought he at least had some idea of some of the sensory aspects. I thought he might, for instance, know his problem with loud noises stems from his autism.
So, I asked him a few questions to find out what he might know about autism as an autistic child.
Me: You know you’re autistic, right?
Me: Do you know what autism is?
Tyger: It’s about people’s…errr…it’s about…it’s about humans…but I don’t actually know what it’s about.
Me: How do you think autism affects you; what things might you say or do or feel because of it?
Me: Anything else? Anything you know about autism?
Tyger: I don’t know about autism.
Me: Do you know what it means or what you’re maybe good at or bad at because of it?
Tyger: I’m bad at juggling.
Me: Do you think having autism is a good thing or a bad thing or neither?
Tyger: Good thing.
Granted, Tyger was off school ill when I spoke to him but it still doesn’t look like his knowledge of his own autism is anywhere near as good as I had assumed. I guess you could make the argument some of the motor skill issues that can go along with autism might make it harder for autistic people to juggle but I suspect Tyger’s inability to juggle has a lot more to do with him being five and the fact he’s spent a grand total of about three minutes of his life actually trying to juggle.
That’s okay, though; not long ago I wrote a post all about explaining SEND (special educational needs and disabilities) to children. I can just use that, right? Except, that post is very specifically aimed at explaining SEND to other children. I tried talking through some of the points in that post with Tyger but it’s really not aimed at the kid with SEND.
I’m starting to question things I hadn’t really thought about before. When Tyger said he thought autism was a good thing I was initially quite pleased…but quickly questioned that response. Is it positive Tyger thinks of autism as a ‘good thing’ because it means he won’t feel embarrassed by it or see it as a taboo? He can ‘own’ his autism, so to speak? Or is it slightly worrying because he might not be prepared for the often rather negative views other people have about autism, not to mention the fact it will undoubtedly make his life harder in a myriad of ways.
Should I be warning him in some way? About the possible bullying and ignorance around autism? I mean, I haven’t warned him – for instance – that our vegetarianism might lead to comments and judgements and my parents also never warned me (I’m a life-long veggie). I just dealt with people demanding my reasoning (even as a child) for my diet decisions, people pretending to be disgusted by my food, people making oh-so-hilarious jokes about me never eating ‘meat’ or ‘sausage’ (*wink wink*, *nudge nudge*), people wafting their own food at me as if must be torture for me to smell meat and not be able to eat it. I didn’t have any warning any of that would happen and it probably wouldn’t have made much difference if I had.
But, autism is not the same. Autism isn’t a choice and the bullying that might go along with being autistic is likely to be worse than some unimaginative innuendo and weird food wafting.
Then again, anything and everything can and does get used for bullying purposes. Yes, some kids are far more vulnerable but no child is safe from the possibility.
The bullying issue aside, should Tyger know more about his autism so he understands and is more capable of dealing with it? I mean, I try; he has ear defenders he takes to school every day and I thought I’d explained – more than once – why he is more sensitive to noise than other people and why the ear defenders can help.
I talk to him when he’s obsessing over something about why he gets so caught up in one thing and can’t move on, we discuss his struggle to regulate the volume of his voice, his problems with tags and seams on clothing, his need to have extremely tight shoes, his inability to focus when there’s the tiniest distraction within a mile radius.
Ideally, I’d like it if Tyger was able to advocate for himself and was able to recognise and articulate his own limitations. However, that’s something with which many adults (and neurotypical ones at that) struggle so it will likely take time.
Perhaps he has taken some of it in but it’s a complicated subject and, to be fair to Tyger, I still get flustered when asked about autism and struggle to explain it to others. For now, I suspect all I can really do is continue to be open and honest about autism and all it brings and trust Tyger – and Bear as he gets older – will gradually start taking in what I’m saying.