“Don’t ask questions you don’t want the answer to” is generally good advice I’ve found, right up there with “If you play with fire, you’re going to get burned”. Recent events in my life would back up both those adages. I’ve always felt, well I’ve always been, a bit “different”. Socially awkward, quite rigid in behaviour, hyper-focused on topics with a need for heavy, fast music turned up to eleven. All this was fine, I coped, but at some stage in the long-running war with the local health board to try to secure an Autism Assessment for our child, (war is no exaggeration by the way), I hit on the idea of getting assessed myself by the Integrated Autism Service. Good idea? Not necessarily.
A 2016 Evaluation Report presents troubling questions about the ethics of adult diagnoses. Some reported “relief” upon diagnosis, as years of struggle were suddenly explained. Others felt a sense of “abandonment” due to a lack of follow-up counselling or support. The Report quotes some professionals’ concerns querying how helpful adult diagnosis actually is. Others questioned whether it was ethical to invest in a process that produces a diagnosis when there is no service to meet that need. If medical professionals are querying the purpose and ethics of a procedure, we really should listen.
I was confident I could handle anything that came from the assessment but, when I received the diagnosis of ASD I plunged into the bottomless pit of despair. I felt no relief, just an overwhelming sadness and self-loathing as past events in my life played on endless repeat over the widescreen of my mind. As I sank further, I came to believe that there were actually three versions of me.
Firstly, The Man I Thought I Was, an organised and measured chap, never one to follow the crowd but capable of fighting my corner. Leaving school with no qualifications, I had dragged myself out of dead-end jobs and heavy drinking to make a success of my life. Proud of my achievements from a pretty low starting point, I saw myself as a good role model for others who may not have had the best start in life. It may be one of the Seven Deadly Sins, but I’m sure I was guilty of being proud of myself.
However, the roof caved in after my diagnosis, and I saw what I believed was “The Real Me”. Personality traits I accepted, even compensated for, were laid bare and the implications ran riot. The restrictions of obsessive routine and fear of change had dictated too many life-choices, and when you add the pervasive anxiety and omnipresent social anxiety, that’s an intoxicating mix, capable of sinking anyone, and how I sank. Things I had said and done over many years weaponised themselves and came charging down in their battalions. They laid waste to dignity, self-confidence and humour, taking away any sense of pride.
"I’ve always felt, well I’ve always been, a bit “different”. Socially awkward, quite rigid in behaviour, hyper-focused on topics with a need for heavy, fast music turned up to eleven."
That unleashed the beast within, a devious fiend lurking in the shadows of all I was, The Man I Could Have Been. Despite being only an idealised construct in my imagination, this fellow started to hound me, taunting me with his trophy-cabinet of Neuro-typicality; the successful education and subsequent career, popularity among a wide circle of friends and the ability to mix with ease in social situations. I saw a man who could regulate his emotions, who wasn’t hung up with the demands of routine and was mercifully free from the shackles of anxiety. He was an ideal partner in a relationship, the sort of parent children love; always present, engaged and easy-going; popular with their friends and other parents. What a guy!
If only I had known as a younger man what my rules of engagement are, understand my triggers and develop coping strategies. Could I have been that man and would that have made me happier? Who knows, but he had long since evaded my grasp and now I was deep in mourning for him and full of contempt for The Man I Really Was.
So, were the clinicians right in their ethical concerns about adult diagnoses with no follow-up support? You bet they were. The whole strategic approach to Autism needs root and branch reform, from the absurdity of hideously long waiting lists for child assessments, right through to diagnoses in older people. Governments can throw as much money as they like at virtue-signalling programmes-it doesn’t change the fact that they still lack clear aims, accountability and measurement of progress.
The scale of undiagnosed or unsupported autistic children and adults is not simply an equality issue that authorities can pay lip-service to, it’s actually a time bomb lurking in the shifting sands of society. Excuses for lack of funding simply don’t wash. Who knows how many millions we waste every year on a prison population that contains large numbers of Neurodiverse inmates, alongside many more who are likely undiagnosed. What is the financial and emotional cost to a society of substance addiction, broken-families, homelessness and unemployment? How many children will leave school with no qualifications, or simply become non-attenders while they remain on waiting lists for years?
As for my three lives, the stronger I get, the less I see of The Man I Could Have Been. He can have his Neuro-typical ideal existence. The people and things that I love are all part of the express train that is my life, whichever station it is heading to. Autism is just another suitcase to throw in the baggage car while I continue heading West. I now understand that, to quote lines from a Jason Isbell song, “There ain’t much difference in the man I wanna be and the man I already am”.