Autistically Speaking…

World Autism Awareness Day is not a public holiday.

More to the pity. But it is an opportunity for a lot of disagreement. Do you go blue or purple? Rainbow perhaps? Does going one colour or the other (or painting a pie chart on one’s face as some kind of retro-post modernist-politico declaration that one ‘gets’ that it’s really all about the money) advertise one’s allegiance to – or distrust of – one autism ‘charity’ over another. This year, I’m going gold. Why? Well, I read somewhere that it’s the colour of choice for self-advocating autistic adults. I don’t know if that’s really true or not but I do know that Dolores O’Riordan made it look really cool. And just for the record, Autism Speaks (and NO, I am not including a link to their website) has no more monopoly over the colour blue than the sodding Tory party. I’m pretty sure it belonged to the sea, the sky and Meconopsis poppies first!

Go Gold WAADC

The truth of the matter is that me painting my own head – any colour whatsoever – however sensorily self-satisfying the brush strokes may be, raises a sum total of zero Autism Awareness in the world; much less Acceptance.

Just for the Hell of it – ok, maybe not just for the Hell of it – I’ve gone a body-art step further this year with some permanent ink in a prominent spot. But I suspect I’ll still only be preaching to the converted. I wonder what Temple Grandin will make of it. I’ll have a chance to ask her in a couple of months. It should have healed really nicely by then.

Different... Not Less. C

I chose this specific quote from the ever expanding body of autism focussed literature precisely because of its inherent unspecificity. It applies to absolutely Everyone. Everywhere.

My own only partially structured, expletive-littered writing style might not be terribly well suited to the subject matter. Then again it might be absolutely perfect for it. I’m not sure. Either way, what follows is my inevitably biased and idiosyncratic contribution to World Autism Awareness Day 2016. More objective facts and figures with reference to autism can be found elsewhere, allegedly. This is no more than a spotlight on our little corner of that ever widening world.

Dear Reader,

If you’ve never stumbled across Aspernauts before (and 99.999999999…% of people haven’t) please indulge me a brief moment to introduce myself and outline my particular angle of approach. I’m a decade married, stay-at-home Mum – fast approaching my 42nd birthday. And yes, I fully expect to be divulged the answer to Life, the Universe and Everything on that date. Until then, I’m just fumbling my way around in a dark room, searching for a black cat which probably isn’t there. Just like everybody else. My son has autism, if you’re a fan of person-first descriptors. If you prefer identity-first language then he is autistic. Or an autist. If you know him personally, he’s an awesome young dude, if you can call anyone who is 522 years of age ‘young’ that is! (Oops, my mistake, he had his 523rd birthday yesterday but we’re not supposed to acknowledge that so you never heard it from me! – Don’t ask – it’s a PDA thing. Actually, DO ASK! This post is about AWARENESS and ACCEPTANCE after all! Ask me anything you like – within reason(!) – and I’ll do my very best to explain.)

I myself am most likely an Aspie (at least that’s how I now self-identify) but it’s difficult to be absolutely sure because no one seems to really agree what Aspie might mean if you happen to be female. Or if you self-identify as being female. Or male. Or if you don’t. Or something.

My husband believes himself to be straightforwardly neurotypical. But then he has a lot of funny ideas about a lot of things.

‘Neurotypical’ is just another label to take offense to. At a NAS conference, a couple of years ago, an opening plenary speaker (billed on the programme as being ‘on the autistic spectrum’) addressed his audience as “All you neurotypicals…” at which point my hackles immediately rose. I’m not even sure what he said next because my internal monologue of “How fucking dare you make assumptions about my neurology…” drowned out anything further he had to say. Ok – that’s the F word out of the way. Moving on…

I half joked on this blog, a little over a year ago, that if Boy was going to receive any more diagnostic acronyms (in addition to ASD, SPD and PDA) he could use a few more vowels. As it happens, he can incorporate two extra vowels this year, along with three more consonants which go together to make up the acronym ARFID (Avoidant/Restrictive Food Intake Disorder – in case you were wondering). I’ve yet to put this one to the paediatrician but the opportunity will present itself next week at our bi-annual (only just bi-annual mind you – our last appointment was eleven and a half months ago) clinical appointment. ARFID, unlike PDA (Pathological Demand Avoidance syndrome), is at least listed, along with (first draft) inclusive and exclusive diagnostic criteria, in the DSM-V, if not the ICD-10. The jury is still out on whether or not it will make it into the ICD-11 but, in any event, diagnoses will be few and far between because the diagnostic criteria may yet change (at present it is another one of those umbrella terms, covering all childhood-onset eating disorders other than anorexia nervosa and bulimia) and in any case – most frontline clinicians don’t even know what it is, much less recognise it.

When it comes to diagnosing Autism Spectrum Disorders and/or the bewildering array of commonly occurring co-existing conditions, the NHS way of doing so frequently appears incomprehensibly arbitrary and to be based largely on postcodes and the whims of clinical commissioning groups. For example: in our County (pre DSM-V, before most of the pervasive developmental disorders were collapsed under the single diagnosis of ASD) it was local policy that no child under 8 years old should be diagnosed with Asperger’s syndrome. But no one could really say why. A neighbouring County currently has an equally random policy for the diagnosis of ADHD. Our hospital’s Consultant Clinical Child Psychologist retired at the end of last year. Instead of replacing her, someone whose primary concern it is to not spend any money considered it a far better option to indefinitely suspend Early Years ASD diagnoses. Now only school-aged children, locally, qualify for an NHS assessment for autism. And once obtained, a diagnosis of ASD apparently covers all shadow syndromes, irrespective of how forcibly they present themselves in any individual. Request any investigation into suspected co-morbidities in your child and you’re much more likely to walk away with your own diagnosis of Munchausen’s.

If you’re self-advocating your way through the NHS assessment process as an adult, your time would be better spent building a rocket to fly yourself to the moon. You’ll be there and back again in half the time. The last correspondence I received from the NHS, “re: [my own] ASD Assessment”, dated: 7th February 2014, states:

We will contact you when you have reached the top of the waiting list but please be advised this is currently taking approximately 24 months.

That was nearly 26 months ago and I stopped holding my breath a month later when I decided ‘this is bullshit’ and went private. Not everyone can afford to do that. I don’t expect to ever hear from the NHS again “re: ASD Assessment” if I’m totally honest. I’m still waiting on two psych referrals: one made sometime before I was married and the other way back in the nineties. Still, they gave me various pretty pills to keep me quiet whilst I waited. Pencils and a colouring book would have been nice.

I don’t know if I have the correct diagnosis or not. I might once have been what Dr Luke Beardon refers to as the “oblivious Aspie” and I might now be a “slightly more enlightened Aspie”. Or I might not. Aspie is a better ‘fit’ than anything previously suggested to me but it’s not like I’ve had a genetic test or anything. Clinicians always look more widely for familial traits when an ASD diagnosis is on the cards and you don’t have to look back very far through my own family tree to find someone glaringly obviously on the spectrum. Incidentally, the relative I have in mind was the first person I saw more than a passing physical resemblance to in my son the very first time he smiled as a baby. But that’s just a curious little matter of anecdotal opinion and proves absolutely nothing at all. And Aspie or not, I still don’t feel comfortable in my own skin.

The underlying genetics of ASD are bonkersly complicated and have seemingly little to do with straightforward inheritance. In terms of frequency of mutations at the level of the oocyte, the latest research finds no quantitative difference between individuals with autism and the rest of the general population in any given generation but those mutations tend to be skewed towards synaptic function. According to the mice. And mouse autism looks and sounds exactly like human autism. Obviously. And yes, the behavioural research is based largely on squeaks. Rigorously Foolproof.

Given the kind of language I’ve used so far, you might reasonably assume that I conceive of autism with reference solely to the medical model – but you’d be wrong. Like all parents of children with additional needs, we’ve been wrung through the ‘deficit’ model of investigation and description, over and over, by one outside agency after another to finally reach a place from where we can confidently and authoritatively request that it is in the social and physical environment and in people’s attitudes and approach that changes need to be made. Such a request elicits various extremes of response.

When Boy was being ‘taught’ the tyranny of cursive handwriting and the importance of “fitting in” at any physical and/or psychological cost, over and above anything remotely meaningful or useful to him, in the baptism of Hellfire which was mainstream reception class, I requested a few reasonable adjustments on his behalf. The school’s response was not to seat him so that he was actually facing the teacher and the board, or to provide visual back up for instructions he did not understand, or in fact to even use his name when addressing him so as to make him aware that he was actually being invited to be a part of something. The school’s actual response was to change the wording in the school prospectus from:

8.45 a.m. – Parents are invited to sit with their child in the classroom to help them with their work until the school bell rings at 8.55.

 to:

8.55 a.m. – Children may come into school at 8.45 and begin their work (at the start of term in class 1 parents may come into school if required for a few weeks)

Boy was on School Action + at the time, and was undergoing statutory assessment. The details of his ASD diagnosis were well documented in his school file – but rather than voluntarily implement any very easy, low cost, (no cost!) strategies to help him with his learning, a school-wide organisational change was implemented in an extremely crass attempt to evict me from his classroom so that I would no longer be a witness to what was actually going on. The only reason I was there for so long each morning in the first place was because the school never put the ‘meet and greet’ TA support in place which they promised, in writing, at the TAC meeting before the September term even started. I paid as much attention to their new morning schedule policy as they did to their own SEN policy.

The school Boy now attends could not be more different. After an initial internal assessment of his needs the SENCo was honest enough to admit to us that her first thought was that the school actually might not be able to meet his needs, but that her second thought was, ‘If we don’t, who will?’ And from that point on the staff have worked really hard to make it work, putting directly into practice the theoretical principles of person-centred learning.

I carry an Autism Alert card in my back pocket.

Autism Alert Card C

I present it to people in the manner of a referee issuing a red or yellow card, whenever circumstances dictate the need to do so – because I refuse to explain anything to a stranger about Boy, out loud, over his head, as if he weren’t there – but I do expect people to make necessary accommodations for him.

No one has ever asked to look inside at the ‘important information’ but the outer wallet usually gives rise to a quizzically raised eyebrow or two. The most common reaction from people, honest and fair, is a look of ‘I have absolutely no idea what that means but I’ll try and follow your lead’. And some strangers genuinely surprise and touch me with their kindness and compassion in what might otherwise be quite ‘tricky’ situations. Santa, however, took it as a cue to ask Boy,

So, do you go to special school?

And a checkout assistant thought it conversationally appropriate to ask me,

What’s his mental age?

I am rarely shocked or stuck for words but Bloody Hell!!!

The problem with ‘Autism’ – the word ‘autism’ – is that its meaning is being stretched out to breaking point. It simply cannot encapsulate or describe the vast array of neurological, and subsequently behavioural, differences which find shelter beneath its umbrella. We’ve all heard the truism,

If you’ve met one person with autism, you’ve met one person with autism

   but it is also true that if you’ve met one person with PDA, you’ve met one person with PDA; if you’ve met one person with Asperger’s, you’ve met one person with Asperger’s; and if you’ve met one person who falls somewhere between the constellations – well, you only need look up to marvel at how bewilderingly vast the night sky is. I can’t focus the spotlight too closely on Boy’s bright, shining star because that would constitute a breach of trust and confidentiality. It’s one thing to list a whole bunch of acronyms that say absolutely nothing about the person they belong to; it’s something else entirely to detail to the world the intricacies of someone else’s life as it is actually lived. It’s ok to talk about oneself – I do it regularly at Aspernauts – but this particular post is long enough already and I’d really like to get it published before the day is out.

Best, Kerry. Xx

P.S. If anyone’s telescope can locate ‘neurotypical’, I’d really like to see what that looks like!