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Tiny Tyger, Baby Bear and Me: Who's More Autistic?

Sunday 6 December 2015

Who's More Autistic?

I wrote about my growing certainty Bear has ASD in a post a few weeks ago (What If There Was a Cure For Autism?).  It has thrown up some interesting considerations for me.  The cubs are brothers with not even two years between them and both have ASD/Asperger's but there are some significant differences in how their ASD presents.

Tyger doesn't 'appear' to be autistic to the untrained eye.  His language has always been ahead for his age and whilst that's not actually uncommon for kids with Asperger's, a lot of people still only know about non-verbal ASD kids or, at least, those with a language delay.

Bear, on the other hand, is clearly very bright but struggles with his language.  He's come on leaps and bounds in the last week or two but still struggles to enunciate and often resorts to grunting, a string of vowel sounds and calling everyone 'Daddoo' or 'Daddy' (though, he has attempted other names - including Mummy!).

Tyger holds in a lot of his more autistic traits whilst around anyone he doesn't live with and a lot of his autistic behaviours are slightly a-typical.  He does his 'verbal stimming' but very few people would actually realise this was an autistic thing, even if they were vaguely aware it was a bit 'off'.

Bear's ASD behaviours are both more visible and typical.  He flaps his hands a lot when he's excited or frustrated and he walks around on tiptoes a lot of the time.  He licks the wall, stove and flagstones and scratches and hits his own face when upset.

Basically, Bear currently looks 'more autistic'.

So, what does this mean?  Will Bear have a harder life ahead of him?  Is his ASD more 'severe'?

I actually suspect it might put him at a slight advantage.  Getting Tyger a diagnosis proved to be a challenge because, whilst the medical professionals recognised his autistic behaviours, other people involved in his care (who were consulted in his diagnosis) didn't see any ASD behaviours from him.  Bear has an older brother with a diagnosis alongside his more 'classic' autistic behaviours so will hopefully get that piece of paper more easily.

But it's not just the diagnosis I suspect might be easier.

Tyger is highly anxious and that's why he 'masks' his ASD when around anyone outwith the family (because he desperately wants to fit in).  He moderates his own behaviour outside the house but it's very tiring for him and often means he's exhausted by the time he gets home and more likely to have a meltdown.

Bear only seems to show anxiety when something in his usual routine or placement of things/people is off (and, even then, it's often anger more than anxiety!).  I hope as he gets older he'll actually be able to cope quite well as long as he has a good routine in place.  I don't think - though, it's obviously early days yet - he'll be as likely to hold everything in as Tyger.  If he's able and willing to do whatever he needs to in order to help stop him becoming overloaded (like the hand flapping or any other stimming) he might find things easier than Tyger.

It's interesting to think about what people consider to be more or less 'severely autistic' and how that translates when it comes to the quality of life the person with ASD actually leads.

The temptation is to think of ASD as a linear scale.  I mean, the 'spectrum' in autism spectrum disorder brings to mind a rainbow and the use of 'high functioning' and 'low functioning' (which many people find offensive, anyway) suggests it's as simple as starting at red and working through to violet.  Perhaps red is a non-verbal child who spends their day doing one repetitive activity in between meltdowns with lots of stimming and no eye contact.  That makes violet the slightly quirky but highly intelligent individual who is able to progress in a prestigious career and live totally independently.  Then all the other colours progress through from one to the other.

The truth is, it's not as simple as that.  That non-verbal child might start talking at the age of seven and end up living alone whilst holding down a job.  The employable aspie might have meltdowns nightly from the stress of their job and self harm from the anxiety it causes them.  Who, in this scenario, is 'more' autistic?  And who has the better quality of life?

Of course, those are extreme examples but not unheard of.  A very common scenario is for autistic school children to have what's known as 'spiky profiles'.  This means they excel in some subjects and areas whilst being far behind average in others.  In other words, they are unpredictable and hard to fit into a box.

Many non-verbal children do end up communicating.  Some start talking, others use picture cards, some use sign language and some find they can type (sometimes incredibly eloquently).  Many apparently 'high functioning' autistic people are never able to live independently, struggle with seemingly simple tasks and have a host of mental health illnesses almost certainly linked to their ASD.

Many people on the spectrum tick boxes at either end of the scale or simply a range in between.

I'm not saying there is no point in terms like high and low functioning ASD (though, I am more comfortable using 'Asperger's' and 'classic autism' as these seem to be far less offensive terms).  Nor am I even saying everyone with ASD has the same severity of autism.  I'm simply pointing out it's not black and white (of course not - it's a spectrum!) and that trying to determine 'how autistic' people are is not important.

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At 6 December 2015 at 11:59 , Blogger Spectrum Mum said...

Couldn't agree more. But many people will ask or say, yes but he must be high functioning or, oh yes but he's not that 'bad'. It is much more important to get to know the child behind the diagnosis. #spectrumsunday

At 6 December 2015 at 23:40 , Blogger Tracey Abrahams said...

You have this spot on. I have a nephew who was diagnosed with classic autism at the age of four. He is a prime example of how non linear autism can be because although most of his behaviours are very much in fitting with the clasic diagnosis, he is an extreamly inteligent, highly articulate child. When trying to access support for him, my sister in law had had trouble in the past because he talks so well even professionals assume he is not very affected by his autism, but in truth he in every other way a typical classic austistic child. #Marvmondays

At 7 December 2015 at 00:59 , Blogger Unknown said...

I seem to spend quite a bit of time explaining this to people. I think the word Spectrum is highly misleading. It makes people think of a ladder, a liner line on which to put people. I hope it wont be used for much longer #marvmondays

At 7 December 2015 at 15:48 , Blogger Stories About Autism said...

As a dad to 2 boy son the spectrum who are very different to each other, I often face this issue. I feel that terms such as 'severe' are more for the benefit of others in an attempt to help them understand autism. I try to focus on talking about their strengths and their challenges instead. #sharingsunday Stories About Autism

At 7 December 2015 at 16:12 , Blogger Moderate Mum said...

My son is going through assessments currently one of the things I love about it is I really appreciate my child for his uniqueness because I'm tuned into his behaviours looking for what may or may not be sugns of autism.

At 8 December 2015 at 02:06 , Blogger Leanne said...

autism is a world unto itself - so many variations and so many challenges but it can be a rewarding journey if you look at it from the right perspective.

At 8 December 2015 at 02:32 , Blogger Unknown said...

As always this is an insightful and educational post. I always learn so much from reading your blog. Thank you so much for letting us into your world. #abitofeverything

At 8 December 2015 at 05:45 , Blogger Unknown said...

Very good points, and really intetesting. I think particularly the fact that we probably tend to assume that a person with ASD who appears to function and adapt more easily to what we would see as societal 'norms', and therefore appears less obviously ASD, also must have it easier. As you say, this may well often be flawed, as it ignores the effort and strain they may experience in order to conform that way. #twinklytuesday

At 8 December 2015 at 06:13 , Blogger Tracy said...

"So, what does this mean? Will Bear have a harder life ahead of him? Is his ASD more 'severe'?"

My son is very obviously autistic (high functioning) so he gets the help he needs and his life should be easier because of that. I, on the other hand, went under the radar because I was so quiet and my sensory struggles went ignored or unnoticed which meant that I struggled all through my life.
The autistic 'spectrum' is complex and no two people are the same. X

At 8 December 2015 at 07:20 , Blogger Michelle said...

Despite all of the Autism Awareness nowadays, people still don't seem to understand that there is a spectrum and that every child is different within that spectrum. Even two kids who might be in the same vicinity on the spectrum are going to be different because they have different personalities and different dispositions. My oldest has high-functioning Autism and I hear all the time how he doesn't "look" like he has Autism. Most people don't. We don't know what the future holds for our kids but I do believe that our kids have just as much potential for greatness as any other kid and to me, that's what matters. While it is possible that your son may have a harder time, I think about that all the time as my son is going to start high school next year, as long as he has the supports he needs and the people around him who love him and appreciate him, I believe he will be able to achieve great things. This is a great post and I'm glad I read it. We Autism parents do think about what this world will be like for them as they get older. Visiting from #abitofeverything

At 9 December 2015 at 23:02 , Blogger Lady Nym said...

I think it can be detrimental to children at either 'end' of the spectrum. They might get underestimated or dismissed if people make assumptions.

At 9 December 2015 at 23:03 , Blogger Lady Nym said...

In some areas especially, it can be very difficult to get a diagnosis for an articulate child. Very frustrating!

At 9 December 2015 at 23:06 , Blogger Lady Nym said...

I always picture it more as a 2D graph but even that's not quite right, is it? Basically, ASD is very complicated and can't be simplified into a basic visual.

At 9 December 2015 at 23:07 , Blogger Lady Nym said...

Yes, I find people respond to you giving specific information about my son. Rather than generalising by talking about severity etc.

At 9 December 2015 at 23:09 , Blogger Lady Nym said...

I spend a huge amount of time mulling over what is or isn't an autistic 'trait' in the boys. They are both such characters!

At 9 December 2015 at 23:11 , Blogger Lady Nym said...

Exhausting but hugely rewarding.

At 9 December 2015 at 23:23 , Blogger Lady Nym said...

Thank you. I like to think a few people find some useful information in amongst my ramblings.

At 9 December 2015 at 23:25 , Blogger Lady Nym said...

It's a tough subject because I don't want to diminish the struggles of parents of children with classic and/or regressive ASD. But I do think people can overlook the effort it takes people with Asperger's to just get through a conversation sometimes.

At 9 December 2015 at 23:29 , Blogger Lady Nym said...

Absolutely. My sister wasn't diagnosed until quite recently. She was always 'good' and 'quiet' and any problems she had were put down to her being a bit 'sensitive' or slightly 'odd'. Now we know better but I can't imagine how much it might have helped her if she's had the right diagnosis and support right from primary school age.

At 9 December 2015 at 23:33 , Blogger Lady Nym said...

I don't think I'll ever be able to predict how either of boys will cope later in life but I really do spend so much time thinking about it. I used to get quite upset about other people saying they didn't think Tyger was autistic because they knew an autistic person and Tyger's nothing like them. Now, I use those sorts of comments as an opportunity to educate.

At 12 December 2015 at 13:14 , Blogger My Petit Canard said...

Hi Nym, autism sounds hugely complex, but you do a great job in explaining it to those of us less familiar with it. I'm sure even for those that are familiar with autism, your posts a hughely comforting and helpful. Thanks for linking up to #MarvMondays again. Emily

At 13 December 2015 at 02:25 , Blogger Unknown said...

Another fantastic post lovely! Only this week, after an incident at school, whilst being questioned by the SENCo about different things was I frustrated by how many times I had to say 'there is no black & white'. Some days one approach works, but that approach may not work again for weeks and weeks, it is about them adapting to him, not him conforming to their expectations. Even though Autism is a lot more widely known now, there is still so much more to understand than a term or 'title'. Thank you for linking up to #spectrumsunday, sorry I am late commenting this week, it has been a bit of nightmare. Hope to see you again this week! xx

At 13 December 2015 at 04:18 , Blogger Unknown said...

A very insightful and thought provoking post! I don't think there is a black and white. It is sometimes people's expectations (whether from media or TV or movies) or lack of awareness which perpetuates the black and white picture.

At 17 December 2015 at 12:57 , Blogger Unknown said...

As a teacher I have taught children with ASD (one of my friends little boys also has ASD) aand all are totally different. Some of the features may be the same but it is definitely a spectrum. Really interesting topic, Thanks for linking to #PicknMix

At 17 December 2015 at 14:54 , Blogger Stevie - A Cornish Mum said...

Just wanted to say you sound like an amazing Mum, and they are very lucky to have you and you them :)

Thanks for linking up to #PicknMix

Stevie x


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