About five months ago I wrote this blog post about Baby Bear and my growing suspicion that he – like Tyger – has ASD.
So, have I changed my mind in the interim?
I am surer and surer with every week that passes. Baby Bear is autistic.
There are many reasons I’m so sure Bear (I really need to stop calling him ‘Baby Bear’ at some point given he hasn’t technically been a baby for almost eight months now) has ASD. He walks on tiptoes a lot, he flaps his hands when he’s excited or frustrated, he has some slightly ‘odd’ mannerisms like walking around with his head pressed against his shoulder as if he’s keeping an imaginary phone in place without using his hands, the way he talks in mostly vowel sounds with very few consonants, he’s funny about textures and has become more and more fussy with regards to food, and he has huge tantrums where he screams and screams for half an hour or more and scratches his face and hits himself and…you get the idea.
In the last few days I’ve been pondering how I feel already knowing Bear has ASD when he’s still so young. How do I feel about having two autistic children, what does it mean for Bear in the future, when should I start trying to get him a diagnosis? But the main thing I’ve caught myself thinking over and over is, ‘Does Bear do that because he’s autistic or would he do it anyway?’
Bear can be quite violent (he might run over to me when I’m sitting on the sofa and suddenly bite me so hard it draws blood) and a week or so ago I pretended to cry after he’d hit me. He seemed concerned and brushed my hair out of my face. It was very sweet and it seemed to make sense that he wanted to study my face to figure out what was going on and how I felt. But, a couple of days later, he hurt me again and – again – I pretended to cry. This time I had my hair back in a ponytail…so he grabbed some of the loose bits and put them in front of my face before brushing them aside. I can only assume he has seen me brush the hair out of Tyger’s face when he’s upset and Bear has decided that’s just what you do when someone’s crying. Copying and repeating a social action without actually understanding the reasoning behind it? Hmm…that’s very autistic.
Or is it? Maybe he did it that first time because he really did want to see my face and liked the fact I smiled so tried to recreate that sequence. It doesn’t really matter whether he did it because he’s autistic or not but the fact I wonder so often is interesting and reminds me of a recent conversation I had with the Wolf. He asked, if a ‘cure’ for ASD was discovered would I give it to Tyger. Without really thinking I said ‘yes’.
I suppose, at that point, I was assuming a ‘cure’ for ASD would be akin to taking antidepressants. When I take antidepressants for my depression (which, incidentally, I wrote about last week) they help with the negative symptoms of depression but they don’t change me as a person. I do quite often feel a little ‘spaced’ for a week or so but past that I still quote Firefly and Game of Thrones at people, I still drink copious amounts of tea, I still feel socially awkward about strangers holding the door for me but I don’t cry whenever the slightest thing goes wrong, I don’t take hours to get to sleep.
|I know highly you all regard my MS Paint skills.|
But would it be the same for ASD? If there was some ‘antiautisant’ would it simply take away Tyger’s need for certain routines and distress at their change, would it just remove his anxiety, would it help with his sensory issues? That would be great. That would be Tyger without so much stress and worry and with fewer – if any – meltdowns.
Or would it stop all obsessive behaviour completely so he wasn’t interested in hoovers anymore? Would it reduce his anxiety to the point where he’d stop telling me he loved me all the time (I strongly suspect he tells me so often for the reassurance of hearing me say it back because of his anxiety)? Would it mean his unique way of viewing the world would disappear along with the autism?
|Would Tyger still have put the old, broken Dyson attachment on his
toy Henry Hoover if he wasn’t autistic?
|And would he still have decorated one of his Halloween cupcakes with
a Henry Hoover (that’s apparently what you’re looking at here…)?
Would it, as the Wolf put it, essentially ‘kill’ Tyger and leave us with a stranger in his place?
Because that’s a chilling thought.
This is actually a very controversial debate among a lot of autistic people and the parents of autistic children and understandably, too. It’s unsurprising anyone with ASD who thinks their personality and identity are inextricable from their ASD would be offended by the very idea of something that would remove it. On the other hand, it’s equally understandable someone who feels every day is a battle because of their ASD would be in favour of making things easier. Then there are the parents of children with ‘regressive autism’. Children with regressive autism often start talking and communicating and developing like their neurotypical peers but they suddenly stop talking, laughing, smiling and engaging in any social interaction at some point as a toddler. When this happens, the parents – especially if they don’t have any knowledge or experience of ASD – can feel like they’ve ‘lost’ the child they had. Like that child has disappeared and been replaced by a different one. Can you blame them for wanting the child they feel they’ve lost back, if only fleetingly? In actuality they have not ‘lost’ their child but it’s not surprising if that’s how they feel at the point of regression.
Of course, whilst ASD is still so little understood it’s impossible to say exactly what a ‘cure’ would entail and what it would actually do.
There’s no way of knowing whether ‘getting rid’ of his ASD would stop Bear from brushing the hair from my face when I pretend to cry. Or take away his cheekiness or his love of his favourite toy and his current obsession with the anime film Totoro. Maybe it would just stop his violent, half hour tantrums.
|Or maybe it would stop him from hiding when he’s doing a poo.|
It might make Tyger a better eater so he could have his food touching and would consider trying vegetables…or it might stop all his fascinating and quirky questions about how the world works.
Perhaps it would make it easier for my sister to attend college without becoming completely overloaded but it could completely change her interests and hobbies and all the things that make her…her.
To be honest, there’s probably no point arguing over it right now because the truth is we just don’t know. That doesn’t stop me analysing everything the cubs do, though, and wondering whether they do it because they’re autistic or because of their personalities…or whether there’s even a difference.