Why an Autism Diagnosis is so Important
In early 2012, I had no job, no money and no useful qualifications. I had nothing.
I was on the dole, getting £56 a week. I was going to bed at half two every morning and waking up at half ten. I’d wake up not to watch Jeremy Kyle on ITV1, but Jeremy Kyle on ITV1+1. A show for the retired and the unemployed and I wasn’t even waking up in time for that.
I had left university in January 2012 in the first week of my second term. I hated university. I lived on campus and was so scared of socialising I’d hide in my room and pretend I wasn’t in whenever my neighbours knocked on my door and asked me to go out with them.
On one occasion, I’d left campus and gone walking round the town, just so I could be on my own. I hadn’t had many experiences with alcohol at this stage, so I popped into an off-license and bought a can of Heineken. I was a massive David Lynch fan and loved Blue Velvet, as much as you can love a terrifyingly dark film about voyeurism and sexual violence. In Blue Velvet, the main character Jeffrey Beaumont drinks Heineken. So I decided I’d drink Heineken. I had about half before the taste repulsed me and I left my half drunk can of Heineken on top of a wall for a local drunk to consume later.
Coming back to campus, I see all my neighbours, about to go to a beach themed night out. They’re in Hawaiian shirts, summery dresses. They ask me very kindly if I’ll go out with them. I shit my pants, run past them, into my room and don’t come out till the next day.
This was my first full day of university. Freshers week.
To this day when people talk about Freshers Week and fondly compare tales of drunkenness and amateurish debauchery, I shudder. Brian Clough when he was a player sustained a career ending knee injury in a Boxing Day match. In his autobiography, he wrote how in subsequent years whenever people would ask him what he got for Christmas, he wouldn’t think of presents or turkeys or the looks on his children’s faces when they got a gift they wanted. He’d think ‘I got done’. I’m similar if Freshers Week gets mentioned. I think ‘that was the worst week of my life’.
Over twelve weeks, things barely improved. I was reclusive. Didn’t have a conversation with anyone lasting more than five minutes my entire time there. I would see people on campus and internally be part scathing about how middle class they were and part devastated at how happy and carefree they looked. How easily they all appeared to adapt to a university environment. I hated them and so badly wanted to be them in equal measure.
First week of my second term, I packed my bags and went home. A week and a half later, my sister drove me back there, helped me pack up the rest of my things, I handed in my keys to a rather startled office receptionist and was officially a university dropout. I had no direction, no plan, just a numbing fear of what the future held for me.
All I had was the possibility I might be autistic.
This possibility meant so, so much to me. I’d always, in common vernacular, been slightly weird. I had different interests, different behaviours, different mannerisms to everyone else. I wasn’t like the other kids at school. Not in the cliched, romanticised sense of being a rebel, an outlaw or some hip alternative indie kid who ends up fronting a cool band a few years down the line — I was just plain odd.
My walk was odd and parodied by others who’d climb three stairs at once and do a bad impression of a lethargic elephant as this was apparently how I walked. My way of talking was laughed at. I hated haircuts and wasn’t bothered about my appearance generally, so let my hair grow till it was long and awful. I didn’t wash sufficiently. I had head lice till my teenage years because of general slovenliness. I was bright, had some friends, but my socialising skills were awful. I eschewed parties, shunned the company of others. All these things made secondary school largely unhappy.
I always had this feeling I was different. I wasn’t like the others. I felt weirdly enough maturer in certain aspects. I knew more about culture, politics, how the world worked. But ask me how to put a condom on or about Kanye’s latest track, I had no clue. The concepts of adapting to other people and trying to fit in were anathema to me. I had my own interests, my own behaviours and if those didn’t mesh well with whatever environment I was in, I had no part in it. I didn’t understand other people and why we change our behaviours in different contexts and scenarios.
Towards the end of my time at university, I found a potential reason why I was seemingly so strange. I genuinely can’t remember where I first head of asperger’s (a form of autism for the uninitiated). I tell people I heard David Tennant mention it on Children In Need but I don’t know if that’s actually true or if I imagined it. At the time, university was going so badly I was googling every kind of mental disorder I came across. Something wasn’t right with me. Coming across asperger’s was a true epiphany. It was the hackneyed light bulb going off in your moment. Things suddenly made sense.
I did all the ‘are you autistic?’ quizzes online and came across as autistic in almost all of them.
I did my online research, perused forums. I desired a formal autism diagnosis. I wanted the knowledge of what was different about me, why my behaviour was like it was. I wanted the confirmation of my hypothesis, that I wasn’t just a weirdo but that there was a reason for my weirdness.
Advice I gleaned from the internet was that a private diagnosis would really help me get a formal diagnosis. GPs would apparently often refuse to pass people on to autism specialists unless they had a private diagnosis. My dad was by no means rich, but he managed to stump up £300 or so for me to see an autism specialist in Hove.
The night before, I can remember being in bed, nervous as heck about the next day. I’d left university by this point and even in one term, accrued some student debt. I had few, if any prospects. I was just desperate to be told by an expert I was autistic. If I was autistic, it would explain my behaviour and I could then get help and support. I’d know what my weaknesses were and what I could work on. If I wasn’t autistic, I was just another oddball in the dregs of society.
The next morning, me and my mum popped along to this lady’s house and answered questions for a couple of hours. It was a Saturday. I remember on the train home listening to England being bowled out for 72 by Pakistan.
I got an email about a week later, from Sarah, the kindly woman who assessed me. She told me I clearly had asperger’s. The relief was absolutely indescribable. It was truly one of the best days of my life. My self-esteem shot up overnight, my self-loathing did exactly the opposite. I wasn’t a weirdo, there wasn’t anything wrong with me. I just had this condition which made me behave differently. There was a reason!
Getting a formal diagnosis after that was luckily not too difficult. The biggest obstacle I had to jump over was my GP. I went for my appointment and noticed on my GP’s desk some photos of Carol Vorderman with people who looked vaguely like younger versions of this chap. He promptly spent ten minutes telling me about how his sons had been on Countdown a decade before and had their pictures taken after the show with the blessed Carol.
When I eventually got to mentioning asperger’s, he started talking about something called aspergillosis. He didn’t know what asperger’s was for fuck’s sake.
All I could do was mention autism, thrust my privately obtained diagnosis at him and hoped me telling him to pass me on for a formal diagnosis would suffice. Fortunately, it did. By July 2012, I officially had asperger’s. The report takes pride of place in my bedroom to this day.
Five years on, I have a job, earn a good wage and have friends and a social life. My diagnosis changed my life. I was lucky enough to have a dad who could afford a private diagnosis and a gullible GP who did what I told him to do. It usually takes years to get diagnosed and it took me six months. I was lucky as fuck.
Now, others may be denied the chance of their lives being transformed.
Yesterday, it came out in the press that NHS commissioners in south-west London are considering reducing the number of children getting a diagnosis. The idea is to only restrict a diagnosis for ‘severe’ cases.
This is utterly horrendous. Autistic people deserve a diagnosis. They deserve to have their lives potentially transformed for the better. A diagnosis does so much not just to explain people’s behaviour, but allows people to receive help and support that would be denied to them otherwise. It gives you access to benefits and entitlements that can relieve financial pressures and make day to day living so much easier. It can mean the difference between going to a mainstream school where an undiagnosed child will be bullied in a completely unsuitable learning environment, or them going to a special needs or autism specialist school that’s far more catered to their needs. An autism diagnosis is positively transformative.
To reduce the number of diagnoses would be truly tragic. For one thing, there is already a crisis of insufficient people being diagnosed with autism. A diagnosis for most people takes years. A 2016 Network Autism survey reported that on average, it took a child three and a half years to get a diagnosis. Three and a half years!
It’s not just the time it takes either. It’s the umpteen emails and phone calls, the sheer stress of contacting under pressure GPs, autism experts and local authorities to try and get a diagnosis either for yourself or for your child. It’s a stressful battle with seemingly no end in sight. And it might be about to get even worse.
People with autism struggle in life generally. Only 16% of autistic adults are in full time employment. One in three have a severe mental health problem. Rates of depression, anxiety, bullying and loneliness are extremely high.
There was a study in Sweden last year on autism and suicide. What they found was so unspeakably awful it pains me to just write this. People with autism were seven and half times more likely to commit suicide than someone who wasn’t autistic. Autistic people’s life expectancy in this study was sixteen years lower than non-autistic people. Low functioning autistic people’s life expectancy was 39.5 years. They weren’t even making it to their 40th birthday.
By dint of being autistic, I can expect to live sixteen years less than the people I associate with every day.
I mention this regarding diagnosis because these are people who know they’re autistic. If you’re one of the hundreds of thousands of undiagnosed autistic people, confused, befuddled and depressed at why you behave the way you do, not getting any help, support or guidance, it’s likely going to be just as bad, if not worse for you. Self-knowledge is so important, as is practical help. Being denied to tens, hundreds of thousands of people.
In autism, there is a 4:1 male to female ratio of people diagnosed. Not for one moment do I believe there are four times as many male than female autistic people. I wrote an article for Vice two years ago which explained some of the reasons why, namely that autism from it’s very origin as a concept has been created by white males. The differences between males and females from a neurological perspective were not considered. Women are let down by autism’s infrastructures.
Also, only ‘severe’ cases being considered for diagnosis is extremely worrying. This thread on Twitter by Martha Saunders (Martha rocks people - this post about diagnostic criteria was one of the best things I’ve read about autism. Read her stuff and educate yourselves) explains why it’ll be those who are white, male and correspond to autistic tropes and stereotypes who will benefit from such a move to the exclusion of everyone else.
An autism diagnosis can do so, so much to transform people’s lives. It changed my life and has done the same for thousands, maybe millions of others around the globe. We’re now at risk of fewer people having the opportunity to experience this.
What can we do to combat this problem? I’m not entirely sure. But I do know these moves are coming about due to lack of investment and a shortage of funds in the NHS and mental health and diagnostic services generally.
And on June 8th, there is a general election…