Friend or fiend? The Colours of Autism

So this morning I wanted to talk about Autism in girls, specifically the ridiculous misnomer that is "High Functioning" Autism.

My DD is diagnosed with Autistic Spectrum Disorder.  Here in the UK they will no longer diagnose Aspergers in children :-(   And, as yet, no one seems brave enough to formally diagnose PDA (Pathalogical Demand Avoidance) - although trust me, it is a very REAL thing!!   So she is diagnosed ASD.  If pushed, she is diagnosed High Functioning Autism.

This is because she walks, talks and (on the surface at least) appears to engage and function "normally".

I cannot tell you the amount of times I have heard that delightful phrase "but she doesn't look autistic!"  Even the Special Needs social group my daughter recently started to attend, I was told (by the leader!!) I just don't see the autism in your DD!!!!  It's much more obvious in DS but I don't see it in DD!

And this is the battle I face, every single day. And, more importantly, it is the battle SHE faces :-(  Expectations on her are SO high - yet she has the same diagnosis of the child next to her banging his head against the wall, and the girl on the right swearing profusely and dragging her toe nails across the floor, and the flappers and the smackers and all the other "typical' behaviours we sadly still seem to associate with ASD :-( 

But she has ENORMOUS sensory issues. She cannot bear the sunlight, the smell of virtually every food, anyone breathing near her.  She obsessively cleans her hands, cannot bear them to be sticky for even a moment, yet will walk around with hair unbrushed and over her eyes, dirt on her face or bleeding chapped lips because she will not drink enough and cannot tolerate the feel of lipsil on her lips.

She is highly verbal, but much of this is a smoke screen. Cleverly learnt phrases she can roll out in set social situations.  Once she has used up her stock, she flounders and the friendships quickly deteriorate. 

There is something, something that other parents, teachers, group leaders cannot quite put their finger on.  Something not quite right, but it's not autism, it definitely can't be autism, because we KNOW what autism looks like. We've seen Rainman, we've done a day's training at our place of work, we know someone who knows someone whose child has autism and they can't talk, only scream, and you can't touch them.......

Because she doesn't flap, she doesn't stim or tick in obvious ways.  Although watch closely and her eyes constantly flicker.  Her facial expressions mimic those in the cartoons she has seen, they are not genuine emotional reactions. She fidgets, she runs rather than walks, she favours being on her toes.

She is the child that is first to be invited to every party, the first child from pre-school and school (when we went) to be invited on playdates and to peoples houses for tea.  Because she seems bright, open, sociable, engaging, confident.  She is, in the sense she has learnt to be, but she no more understands it than the fabled parrot understands why he is saying "pieces of eight".  It is just a pattern. A series of sounds and motion that illicit a predictable response from another human.  But in base terms, she doesn't understand how or why this is, so once she is through her rehearsed speeches and responses, the other child slowly disengages from her.  She becomes one of two things - occasionally indifferent (because she is exhausted by the effort of trying to engage them) or angry at their apparent rejection.  Then launches the meanness, the spite, the cruelty.  So she can't possibly be autistic can she, 'cos everyone knows they're not mean......

So she's never invited back for a second playdate, anywhere, ever.  No-one does want to sit with her, be her partner.  People don't like her, and they don't want to play with her, but they can't put their finger on it so it's never anything we can fix.

I can't tell you the number of times I was called in to nursery, school or clubs to be told by a concerned party that she was being "possessive in a friendship".  But no one EVER picked up on why!  It was always HER problem, that she was in control of :-(  It wasn't.  She was possessive in friendships because it probably took all her waking energy to 'translate' that person's pattern of behavior.  Any outside influence would interfere with that - like a radio not tuned properly to the correct channel - the interference means you cannot 'hear' properly.  It's also the reason she struggles, to this day, to maintain multiple friendships and why she would rather go off and draw on her own than play with a group of children.  It is simply overwhelming. It is sensory overload. It is too loud and confusing, to difficult to keep up with, translate, identify the rules and predict the outcomes.  In short it is just too much.  But because she doesn't 'look' autistic, parents judge. Painfully so. And tell their children to ignore that 'nasty little girl'.  They tell their children she is 'jealous' or that she is being 'mean'.   This hurts SO MUCH.  Because they would not, and do not, react this way to a child with OBVIOUS autism.  When my son is stimming, no one has EVER told their child he was 'mean' or 'jealous'.  When he is overwhelmed and just needs to be on his own, or can't engage in that play, no-one has ever said to 'ignore him'.

So let me tell you something.  She isn't mean.  She is emotionally immature.  She has the emotional maturity of a pre-verbal child - so somewhere around 18/24 months.  The terrible two's if you like.  So the emotional maturity of a toddler, in the body of a 9 year old, that looks more like the body of an 11 year old, with the intellectual capacity of a 14-15 year old.  Just think about that for a moment.  For more than a moment.  That's one hell of a cross to bear. 

She is highly verbal, yet she communicates her needs as a non-verbal child would.  She rages, she has silent tantrums, she blames and she sulks and oh how she rages. She broods and she punishes, because baby is cross, baby is angry, baby is sad, baby is hurt, baby is sick.  And this shocks and confuses people - because surely an eloquent, capable, "normal looking", bright, bubbly girl shouldn't be behaving like this.  She must be spoilt. She is just mean and spiteful.  God knows, I thought it myself for long enough :-(

But it's simply the colour of her Autism.  It's called a spectrum for a reason.  And no, we are most definitely NOT all "on it"!  But she is, albeit one of the less-understood colours.

If I could have one wish, it would be that the "professionals" stop calling it High Functioning Autism because, trust me, she's no more High Functioning than those that stim outwardly.  She's no more verbal, emotionally, than the non-verbal.  The world is NO LESS CONFUSING for her, she just turns it inward more.  She has suffered with self-harming behaviours from the youngest age, and this is a constant fear of mine as she gets older.  It is one of the many reasons we have chosen an alternative path to school, because I know that in the system she would be much more susceptible to self-harming psychological disorders as she struggles to cope in an increasingly confusing world.

So we make the world smaller for her.  This doesn't make her High Functioning, it makes her Highly Facilitated.  There's a difference.  A BIG difference.  Strip away all the coping mechanisms, the play therapy, the therapeutic parenting, the carefully managed timetable, the removal of demands from her daily life and you too will see there is no such thing as High Functioning.

We need to understand this more.  We need to understand the colours of autism, and accept that if we know someone with autism, we know that one person with autism.  Just as if we know a person with blonde hair we know that one person with blonde hair.  One size does not fit all.  Thank God!