I am very open about Tyger’s ASD. I don’t want him to ever feel ashamed to be autistic and I am always keen to spread awareness so I do talk about it quite a lot. It’s not like I shout, ‘My child has autism,’ at everyone I come across (the postman, for example, does not know and as I mention so often he’s probably the person outside of family I speak to most) but it does tend to come up – fairly naturally…I think – quite quickly if I’m talking specifically about Tyger. (Whereas my conversations with the postman tend to be centred far more on my family’s Amazon addiction.)
At this point the reaction is always the same: complete surprise (to finding out about Tyger’s ASD; not about the Amazon addiction, which is not very surprising at all).
‘Really? I wouldn’t have known.’
And why would they? That’s the thing about ‘hidden disabilities’: they’re…you know…hidden. I wouldn’t expect most people to recognise Tyger as autistic and I certainly don’t think people would realise I am (and I’m coming round to the idea I am, in fact, autistic since this post).
And maybe that’s not a bad thing. There’s still a lot of stigma attached to ASD and if people can get to know someone on the spectrum without being influenced by their own preconceived notions that might be positive.
ASD often being so ‘hidden’ can have huge drawback, though.
For one thing, people find it hard to understand why someone on the spectrum (or with any hidden disability) can do some things but not others.
I understand. I find myself doing it. Tyger is a particularly verbose child and can prattle on about anything and everything so why does he get stuck on one word or phrase and repeat it again and again and again??
Of course, I know why. I know it’s because he likes the repetition and probably the sound of the word. I know it really but I still ask.
If I find it hard to accept there are often things Tyger simply can’t do – or can’t not do – I imagine it’s even harder for other people.
I also worry people will judge me for not doing things because it seems like I’m perfectly capable. I think I play a sociable, confident mum passably when I’m around people. I can chat, I can even initiate conversations, joke, offer to help with immediate things like making tea or holding someone’s baby whilst they nip to the loo. I think I do a reasonable job of pretending to be a normal human adult…okay, maybe a slightly ‘odd’ human adult with eccentric taste in clothes (and hair colour) but no doubt that adds to the illusion I’m ‘confident’ and don’t care what people think.
Other people don’t see me go home, collapse on the sofa and sit like a zombie. I didn’t even connect my exhaustion with being around lots of other people until very recently. I remember for a while at Uni I’d get home early afternoon and was often so sleepy I dozed on the sofa before I was able to study or do housework. It didn’t occur to me there may be any connection between spending time surrounded by lots of people and then becoming tired.
So, if I can navigate a toddler group or university tutorial or job (back when I had a life that didn’t involve building things out of Duplo and cleaning up small humans’ bottoms) I think it’s assumed – understandably – I should manage other things like organising a ‘play date’ for Tyger. In actual fact, that’s something almost entirely outwith my ability. I realise how ridiculous that sounds. If someone else goes so far as to basically tell me a date and time to be at their house/a cafe/whatever with the boys I can just about manage that (though, may experience a lot of anxiety) but the thought of actually taking any of those steps myself is as difficult as running a marathon (something else I could do in theory but in reality just isn’t ever going to happen).
Part of the discrepancy between what people with ASD can actually do and what it might be assumed they can do is down to ‘masking’, which I’ve written about before. This is when someone on the spectrum ‘masks’ their ASD whilst around certain people. Exactly what masking may include depends on the individual but things like stopping themselves from stimming (repetitive movements or sounds like hand flapping, shaking their head back and forth, jiggling their leg, constant humming etc.), forcing themselves to make more eye contact, not covering their eyes at bright lights or their ears at loud noises, chatting to people when they don’t feel like it could all constitute masking.
The problem with masking is it isn’t sustainable. It’s very tiring and there’s every chance the build up of sensory and social input will cause complete overload at some point. So, whilst it may appear to the outside world that someone with ASD is ‘coping’ fine or perfectly able to do all sorts of things the outside world doesn’t see the impact and aftereffect once the autistic person is away out of sight.
Generally, I’m pretty lucky in that I haven’t experienced much bigotry surrounding ASD but it’s still always at the back of my mind and I also know a lot of people on the spectrum or with kids on the spectrum aren’t as lucky as me.
So, if you know someone who’s autistic and they say they can’t do something or a parent says their child won’t cope with something, please believe them. They are likely to know better than you.
A child who can cope with loud noise in the context of an activity they enjoy doing might not cope with the noise of a birthday party.
A teenager who ‘seems’ perfectly ‘normal’ might still genuinely need to sit on that specific seat on the bus. If they ask you to move they’re not being awkward and they haven’t been ‘indulged’ or ‘spoiled’ by their parents; they genuinely need to sit on that seat to avoid a much worse situation than you having to move to a different seat.
An adult who has a well-paid professional job might not be able to cope with going swimming alone.
You don’t have to understand ‘why’ any of these things are so hard (though, it’s nice if you try) but please accept they are and – as always – be kind.