The Misnomer of High-Functioning Autism

I've been meaning to write about this for a while, for quite a while actually.

My children are both diagnosed with Autism.  My daughter's diagnosis is officially High Functioning Autism (formally Aspergers) and my son's is simply Autistic Spectrum Disorder (yuk!).  Sorry (not sorry) but I hate that term - disorder - there's nothing 'wrong' with him.  He is amazing, and a far better human being than many NT's I've met in my life....

Anyway, I digress. 

Both of my children are highly verbal.  Extremely, highly verbal.  On some days I would say Relentlessly Verbal!  Apparently this means that are Functioning more Highly than less verbal autistic people.

What an absolute crock!

Language is their main stim!  Very little of it is understood, or applied in the correct context.  An ENORMOUS amount of it is echolalia.  Spend more than a few hours in our company and you will quickly realise that conversation is, by and large, on an endless loop.  It isn't actually conversation at all, as you and I know it.  There are no "how are you's?" No "Could I have?"  Or "May I just?"  Or "I would like"s or "I think" "I want" or "I am"s.  But there are enormously chunks, soliloquies of beautiful prose and composition. Some even masquerading as Opinions....  They rarely are, unless they are my repeated opinions, or from a book or a film they've recently seen.

My son had a Physiotherapy appointment recently.  He has this for his hypermobility, and for the fact he finds it extraordinarily difficult to control and manoeuvre his body with appropriate force and motion.  On this particular occasion, as his Physio repeatedly jumped up to stop him ramming himself in to the wall, she concluded that his mobility problems are due to "Growth Spurts"!  Her actual expert opinion was that "because he is so physically big for his age, when he has a growth spurt he forgets how to move his body and has to relearn all his motions appropriately for his new size.  This happens frequently because he is the top percentile."

Hmmmmm, he FORGETS how to move his body??  Because that's totally Neurotyical isn't it?  When I wake up of a morning, I've often forgotten how to get out of bed.  Y'know 'cos I've been asleep.......    Except actually, no I don't.  I don't ever forget how to walk up a flight of stairs or sit on a chair or not drop a cup or bite through a glass.  I've never 'forgotten' any of those things, ever.  Because my circuitry doesn't jam in the way his does. 

Yet because my son presents as 'High Functioning' - he can converse, he will comply, be obedient, follow an instruction (at an appointment once every three months at least!) - his actual needs are missed, ALL THE TIME.

He frequently inverts his leg, cannot stand up because he is so fatigued, has to pull himself up the stairs on all fours and slide down them (holding on to the sides).  He has pulled the hand rail out of the wall, he has cracked the sink in half just by applying TOO MUCH PRESSURE.  But apparently it's just Growth Spurts - because even the professionals FAIL to recognized his DIAGNOSED Autism and consequential SENSORY PERCEPTION DIFFICULTIES.  They also REFUSE to consider other conditions may be part of his mix - because he does have a diagnosis of Autism, and he can walk and talk, so he couldn't possibly have ADHD as well could he?  Or Dyspraxia?  Or EDS?  Or maybe even PTSD?  No, because Autism has been diagnosed and all the experts report that he 'Functions Highly' despite the fact his diagnosis confirmed he was severely impacted by autistic behaviours, severely impacted.

And my daughter.  My darling girl.  Who misses a thousand social cues a day.  Who says grossly inappropriate things at the most inopportune moments.  Has genuinely no idea at all that she is being facetious because she has totally misinterpreted the correct social context of the language she is using.  Who seems to be unable to sustain friendships, or maintain lasting genuine connections with people.  But she can impress the adults when she is sat in the chair.  She can appear bright, witty, eloquent, with no idea why the magic words she is parroting out are hitting the spot, just that they have done before so she will try them again now.   And if she focuses on a spot in the distance she can hold her ticks, her fidgets in until afterwards.  She can dodge any direct instructions or commands for those very short periods of time that she in under scrutiny.  But be with her all day and the façade quickly unravels.

But I think what is hardest for them is they seem to have feet in both camps and can master neither.  Because society tells us they are not "severely" autistic - because they are able to control and contain some of their stims, some of the time.  But they are not Neurotypical either, and they don't understand the minefield of social situations, interactions and nuances that others take for granted.  So they are stuck, in No Mans Land.  And it is lonely, and bleak, and frightening.  And that is NOT High Functioning - it is simply less understood and less facilitated.

About 6 months ago my kids started attending a special needs social group.  They like the activities and the facilities there, but they do not like the fact they are not understood.  They are more verbal than any of the other children there.  So, sadly, they have been deemed more capable.  They are not.  They do not understand why they are being asked to tidy up after other children who are throwing stuff around, or why they are supposed to 'accept' that person hitting or yelling at them.  And why their colour of Autism is less important, because the adults in charge can tell it to "shhhhh" more.  But yet this is what happens.  And we are sticking with it only because there is nowhere else.  Nowhere else that fits, that is safe and appropriate for them. So I am educating the leaders and staff that run the group that this is not ok, and there is more that one colour of Autism, and they all need help, facilitating, safe guarding, valuing, listening to.  My children should not be expected to concede more often, simply because they appear, on the surface, to be more capable.  When, infact, delayed processing, lack of auditory understanding and emotional unregulation means it can take days, weeks and often months to work through these issues at home afterwards.  This is NOT High Functioning.  It's simply "putting up with more" or "making less fuss" - and that makes me weep, literally and frequently when I see the additional battles they have to face because of this label.