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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So...What *Is* Autism?

The toddler group we used to go to has finally started back up, which is good when the weather's pretty dreary but the cubs need to get out of the house.

I can't wait 'til they're old enough to enjoy sitting on the sofa with
a cup of tea on days like this.

There was a nice couple at the group whose little boy has now started school but they came along to offer moral support to the woman who's taken over the running of things (and I imagine for the tea, as well - that's at least half the reason I go).  I used to chat with them quite a bit before summer so they knew Tyger was being assessed for ASD and I mentioned the fact he got a diagnosis.

That's when the inevitable happened.  The dad (not so called just because I anonymise everyone on here but because I can't actually remember his name) asked me what having ASD actually meant for Tyger.

I love the fact he asked because he didn't assume he knew, he was genuinely interested and he wanted to hear from someone who had knowledge and experience of ASD.  Great.  Really, really great (no, genuinely great - why do I always read that word in a sarcastic tone??).

I also hate the fact he asked because I never know what to say.  Autism spectrum disorder is a...well, a spectrum and a disorder (ah, I see what they did there!).  It's not one thing and it varies for everyone.  Just thinking about Tyger alone and what ASD means for him is really hard because it's a combination of lots of behaviours and thought processes that all interact and change.  And it affects others on the spectrum completely differently.

I stuttered a bit about his sensory problems, anxiety and social issues but I don't think I really shed much light on what ASD actually is.

So, what is autism?  This question is harder to answer than you might think.  Right now we don't know the cause of autism so it's a term used to cover a collection of certain behaviours (and by 'we', I mean humanity in general  in case you had visions of me conducting studies and looking at brain scans and...other sciency things).  Of course, we don't know whether this collection of behaviours is even always caused by the same thing.  In some families - like mine - there seems to be a very strong genetic element.  When there are many families with many diagnoses of ASD it's hard to imagine it's a coincidence.  However, there are also people with ASD who appear to be the only ones in their family.  There are also many cases of children showing enough 'autistic traits' for a diagnosis where these traits have probably come from the fact they have been deaf or had hearing difficulties for the first few years of life.  Other times it is perhaps an overlap of other conditions or disorders (like dyspraxia or OCD) that present as ASD.

Hopefully, in the future we'll have a way of separating out these similar and/or related conditions and disorders leading to better treatment or support for them all.  For now, though, there are certain diagnostic criteria for ASD but they do seem to vary depending on where you are and even which set of professionals you happen to end up dealing with.

The NHS website breaks down ASD into two main 'symptoms':

• Problems with social interaction and communication.

and:

• Restrictive and repetitive patterns of thought, interests and physical behaviours.

You may also have heard of the 'triad of impairments'.  This is not a member of the Chinese mafia who deals with problems and difficulties.  It is three areas in which people with ASD struggle, often demonstrated by a triangle:

What do you think of my incredibly basic awesome Paint skills?

Depending on where you look, the exact wording might be different.  You might find 'flexibility of thought' becomes 'social imagination', for one thing, but generally the three 'impairments' cover the same things regardless of the exact wording.  Does this all sound a bit vague and confusing and like there's a lot of cross-over?  Welcome to my world!

It might help for me to use Tyger as an example to put these terms in context a little (or it might not but if you've made it this far you're about half way so might as well keep going now).


Social Interaction

Tyger struggles with 'appropriate' social interaction.  It's not that he doesn't enjoy talking to people because he does...a lot.  But he'll stand or sit too close to them because he's completely unaware of other people's personal space.  If I find him a bit suffocating then I can imagine it's off putting for other people (and I've seen other children get angry with him 'playing' by pretty much sitting on them so kids pick up on this stuff from a young age).

Whilst I hate the emphasis put on eye contact when discussing ASD, Tyger does have reduced eye contact and he finds it tiring to have to look at people's faces for any length of time (a conclusion I only reached quite recently, as I wrote about here).

He struggles to identify other people's (and, in deed, his own) emotions.  More than once, Baby Bear has cried and Tyger's response has been, 'Look, Bear's happy!'


Language and Communication

This does not mean Tyger is 'behind' in his language.  In fact, as the speech and language therapist (SALT) put it, his language is very 'sophisticated'.  He had over 200 words in his vocabulary when he was 18 months old, which is quite a lot (for anyone who doesn't have kids: the average for this age is something around 20-50 words (and for anyone who does have kids you'll have obsessed over numbers like that until your child was at least two so you'll already know)).

There were some oddities, though.  'Mummy' and 'yes' were not included in those 200+ words!  Two of the very first words children learn and they were nowhere to be seen.

In a similar vein, the SALT said it was interesting to note how - despite Tyger's language being advanced in many ways - the areas of language where he was more average or even slightly below average were connected with social awareness.  For instance, he comes out with amazingly grown-up phrases and has a huge vocabulary but still uses 'he', 'she' and 'it' interchangeably when talking about people.

It's also very common for people with ASD to have trouble processing language.  With Tyger - and with other members of my family - this means he will frequently respond with 'what?' to anything you say.  He's heard the words but needs a moment to actually make sense of them although I wish he would do so without the immediate 'WHAT??'.


Flexibility of Thought

The worst part of this for Tyger right now is the fact he seems to think once he states an idea, it is agreed upon and will happen.  So, 'I know, let's go outside,' in his head is, 'Everyone has agreed we will definitely go outside this instant.'  It's hugely frustrating and no amount of 'no' stops him.  I've tried other tactics like explaining the weather is awful but he'll just come back with, 'I have an idea; let's wear our boots.'

I need to hide these!

He just keeps asking, and telling, and explaining and generally going on and on and on and on and on about going out-smegging-side for hours and hours and hours and hours and...you probably get the picture.

He also struggles with changes to routine and 'the norm'.  He has a biscuit after lunch every day so if he sees a character on TV eating a biscuit before lunch he's utterly incredulous.  The mere suggestion of such blatant disregard for biscuit eating rules is unthinkable to Tyger.  There are also two lanes from the road to his preschool: one big and one small.  My mum dropped us off nearer the big lane the first few times we went so Tyger cannot go down the smaller lane on his way to preschool.  On the way back, yes.  On the way there, don't be so Goram ridiculous.  Going down the small lane on the way to preschool is almost as bizarre as eating a biscuit before lunch.



So, could I have just said all that to the guy at the toddler group?  Even if his eyes didn't glaze over after the mention of eye contact it doesn't mention all his sensory issues, which are a massive daily problem.  It doesn't touch on meltdowns, what causes them and what they're like.  And it's just picking out a few points from the many, many battles and problems and differences Tyger faces every day.

It's a tough one.  I want people to ask because I'd rather they showed an interest than either avoiding the subject or making assumptions and silently judging.

But I don't know what to say when someone actually does ask.  I want to get across everything but I don't want to lecture them until they turn off.

Any suggestions gratefully received.

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