Friday 21 April 2017

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. 




Sunday 2 April 2017

World Autism Awareness Day 2017

I wasn't going to write a separate article today.  What have I got to offer? I thought.  What can I possibly add to those who are way more expert in this arena than me?  What can I say that hasn't already been said?

But I can't not write. I can't not add.  There IS still so much to be said, so much to be learnt, so much to be done.

I am an Autism Mum. My children are both diagnosed with Autism Spectrum Disorder (a title I HATE with a passion!).  I'm wholly comfortable with the diagnosis of Autism. I am wholly uncomfortable with the label "Disorder".

And, as every Autism parent knows Every Day is Autism Awareness Day.  We are so, so aware. Every day, all the time.

I have seen much on social media urging us not to Light it up Blue.  I think I am growing to understand this sentiment.  My son is younger than my daughter, yet he was diagnosed first.  So yes there is still that misinterpretation that Autism is a male thing or that it is more prevalent in boys.  I don't buy this.  The stats may show it is more diagnosed in boys - we are yet to determine if it is more prevalent.  Until we have an accurate diagnostic tool, and so, so, so much more awareness, we simply will not know.

My daughter was diagnosed 15 months after my son, and largely it was my son's diagnosis that helped us FINALLY secure a referral for her to even be seen and assessed.  Even then it was a battle, because she was intelligent, and verbal, so she couldn't possibly be autistic could she?  Aaaaargh!!

My son's diagnosis took 3 painstaking, expensive, battling years - because he was good. He was a good boy who suffered massive separation anxiety, so that had to be it didn't it?  I was a fussy mother.  I needed to 'cut him loose', he needed to 'toughen up a bit'.   Not at all.  I was his translator.  In a world where nothing made sense, I was constant and I made sense.  I would translate to him and for him, all the difficult social and sensory situations he couldn't navigate.  Remove that translator and the world was a terrifying place where he was lost and scared and alone.  But they missed all that, for half his little life, despite him also having ALL the early signs - poor eye contact, unresponsive to his name being called, speech delay, speech and language referral, unable to sequence events, unable to predict cause and effect, unable to read facial expressions, unable to determine hot/ cold - the list goes on and on and on.  But it was all missed, by everyone, all the time.

I am thankful for a GP who believed in us.  Who referred and referred and referred again.  Who, despite endless rebuffles and a request to "desist" continued to believe in us and fight for us. 

It's probably because of our diagnostic journeys that I also have issue with the Puzzle Piece autism symbol.  My kids have never been a puzzle to me.  It was clear as ******* day that they were autistic.  I will admit it took a deal longer to finally 'get it' with my daughter.  We thought it was a number of other things, and she ricocheted between counsellors, therapists, CAMHS, Educational Psychologists etc for years before we finally realized that actually she just wasn't getting it.  Yes she was staggeringly bright and astute but she had literally no social or emotional understanding at all.  She actually really didn't understand why she could just go up and take that swing away from another child and go on it herself, she really, really, didn't. She didn't even "see" the other child, she just saw the motion and thought "ooh, swing".  Like an infant would.  And she still does.  Despite the theraplay, the social stories, the context placement - this is still a massive struggle for her but it is truly not that she is being mean, she really does not see!

We do a lot of social stories and a lot of therapeutic parenting at home.  As we home educate, I would say as much, if not more, time is devoted to social understanding and life skills as is given to actual 'lessons'.  And that's fine with me, great infact, as I know this is what they were not getting at school.  Maybe once a term the SENCO would take my daughter to a 'focus group' and spend 15 minutes talking about 'Bullying' or 'How to be a Friend' not realizing that talking without pictures would make no sense to her at all, and that even with visual reinforcement she would need these visuals to be constantly available to her in order to apply them.  She couldn't 'remember' and 'implement' them herself without context and prompting, ever.  So they would throw their hands in the air, call me in to school and protest "but she did the bullying workshop"! 

And my son, had 1-2-1 time daily with a TA working on recognition of facial expressions and sequencing of events.  1-2-1 time, every day, for TWO YEARS.  But no, he showed, absolutely no signs of Autism........

So I guess I can understand the puzzle symbol for the 'professionals' as, in my experience, very few of them actual get it.  And even with the puzzle pieces, a picture and the instructions  right in front of them, still can't piece it together!  And that makes me sad, angry and sad.

But my children aren't a puzzle to me.  They aren't blue (which, by the way, was historically a colour for girls!  Pink was a more expensive dye to produce so this was reserved for the clothing of boys, blues and greys being the cheaper to produce and therefore reserved for the 'less important' girls.  So the whole gender blue thing is topsy turvey anyway to my mind), they aren't red or any one colour in particular.  It's called a spectrum for a reason, a glorious, colourful spectrum.  Unfortunately for us the rainbow is already taken, as I think that far better describes my children than a puzzle piece or one set colour.

But we could argue all day about how best to respresent it.  The important thing is that autistic people and autism families are raising awareness. Flying the flag. Promoting acceptance. Sharing the love.

And it's not easy, it really isn't. Every day is a little bit harder than it should be, fact.  Granted there are times that are magical and wonderful but day to day life takes longer, is harder, requires more input, more management, more planning, more resilience, more prompting, more aids.  For me it's this that I would wish friends and family could understand or just believe.  You don't need to see our child rocking and screaming on the floor to know they're struggling.  Just believe us, please.  And understand when we say no to a particular thing (usually special occasions - please understand they are not special to our kids, they are terrifying and stressful and confusing and overwhelming).  Trust us when we say we can't get a baby sitter - we really can't, it's really not that simple because we are not talking about an adult we know keeping them safe for a few hours. We are talking about the build up, the lead in, the preparation, the social stories, the actual event and then the diabolical de-stimulating, delayed processing afterwards that can take days and weeks and leaves us so wrung out and exhausted, it really wasn't worth those 3 hours and Pizza Express with you!

That is the awareness I would like to raise. 

Thank you for reading xx