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Tiny Tyger, Baby Bear and Me: What If There Was a Cure for Autism?

Sunday, 15 November 2015

What If There Was a Cure for Autism?

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.

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At 16 November 2015 at 03:03 , Blogger Unknown said...

I guess for me it would come down to whether the treatment was reversible. If it were like being treated for depressions then any negative consequences could be reversed simply by stopping the medication.
If, however, we're talking about a one shot cure then I'm more reluctant as there's then no way back if you don't like the effects.

At 16 November 2015 at 03:52 , Blogger Our Home Grown Adventures said...

This is such a interesting idea and something I've never thought about before.. My son has high functioning autism.. I honestly don't know if I would give him the "cure" or not.. Would it just take away his anxiety and uncontrollable emotions or would it also take away his amazing memory and love for maths and science... You've honestly made me think hard about this.. Fantastic post x

At 16 November 2015 at 09:41 , Blogger Lady Nym said...

I'm inclined to agree, though, what if he was happier on the tablets even though he didn't seem 'himself'? It brings up some very unsettling questions, I think.

At 16 November 2015 at 09:43 , Blogger Lady Nym said...

Thank you. It really is a tough one. Perhaps I'd wait until Tyger was old enough to decide for himself? I really don't know.

At 16 November 2015 at 23:23 , Blogger Crummy Mummy said...

It sounds like you have all the facts and know what to look out for which is the best you can dox #twinklytuesday

At 17 November 2015 at 01:58 , Blogger Unknown said...

Wow - this is a very powerful post. It has left me a lot to think about on this Tuesday morning. #TwinklyTuesday

At 17 November 2015 at 04:09 , Blogger SMA Old Posts said...

I guess also, since there are so many different "levels" on the spectrum, at what point would you (or "they") say ASD is "so bad you need treatment" or "not bad enough"? Very thought provoking post!
Have you read Far From The Tree by Andrew Solomon? It raises the idea of being able to eliminate certain conditions like ASD or Down's syndrome - or even deafness.

At 17 November 2015 at 17:04 , Blogger Unknown said...

I just adore that when I read your posts I can feel such powerful love for your babies coming through. You consider their personalities and behaviour from every angle and always with love. Those are a couple of very lucky kids. #abitofeverything

At 18 November 2015 at 00:29 , Blogger Lady Nym said...

I certainly try.

At 18 November 2015 at 00:32 , Blogger Lady Nym said...

Thank you.

At 18 November 2015 at 00:33 , Blogger Lady Nym said...

No, I haven't read it; I'll have to put that on my reading list!

At 18 November 2015 at 00:34 , Blogger Lady Nym said...

Thank you so much. Although, part of it is simply that I overthink absolutely everything!

At 20 November 2015 at 04:36 , Blogger Unknown said...

I have no answer. I don't even think there is a right or wrong answer here. Thank you for sharing your journey as it definitely has given me some food for thought. Very very thought-provoking indeed. Hope to see you again at #abitofeverything

At 21 November 2015 at 12:22 , Blogger My Petit Canard said...

Hi Nym, this is such a thought provoking post. As someone who doesnt know much about ASD, it gives me a real insight into how it manifests in the everyday and what it means for you and your little ones. Some really tough questions, im not sure how I would answer if I was in your position. Really admirable. Thanks for linking up to #MarvMondays. Emily x

At 22 November 2015 at 07:33 , Blogger Lady Nym said...

I don't think we have enough information on autism yet for there to be a right or wrong answer, if that makes sense?

At 22 November 2015 at 07:34 , Blogger Lady Nym said...

Thank you. ASD covers such a huge spectrum but I like to think it helps a little for me to explain how it manifests for us.

At 22 November 2015 at 11:32 , Blogger Random Musings said...

This is a really interesting post. It would be nice to have something that could take away the bits that leave autistic people distressed, but it would definitely be a question of how far is too far.
Thanks for linking up to #AnythingGoes

At 23 November 2015 at 07:11 , Blogger Unknown said...

WOW. What a question. It would be really interesting to know too, although some of the things you mention may not be down to autism, at all, they may just be his personality. My best friend's daughter used to hide when she was doing a poo — she isn't on the autistic spectrum at all. I wish there was a clear cut answer to this pet. Great post, as ever! Thanks so much for linking up with us on #TwinklyTuesday

At 23 November 2015 at 12:29 , Blogger Lady Nym said...

It is very tricky. At what point are you altering their personality and when is that a problem? I'm glad it's not a decision I have to make at the moment.

At 23 November 2015 at 12:29 , Blogger Lady Nym said...

Haha - I mostly just wanted to use the photo because I thought it was funny.

At 27 November 2015 at 12:29 , Blogger Unknown said...

I love this post! I have often asked myself the same question. Hayden developed as expected until the age of 2 and whilst many of his personality traits are there, i definitely wonder whether he has become the child he is now because of autism or because of him?! Would I want a cure? Yes, i think I would. Only to protect him and his future though! Thanks for linking up to #spectrumsunday I really hope to see you again on Sunday xx

At 29 November 2015 at 23:41 , Blogger Lady Nym said...

Thanks. It is a tough one and I don't think there's a right or wrong answer.


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