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.