You might not expect an adult diagnosed with autism to be a public speaker, especially an adult with a long history of social anxiety, who gets caught out by the occasional bout of depression. And while I am talking about me, a man who could simply stay at home and shuffle around in my slippers, I have a different agenda.
I have a different agenda
I’ve got something to say about life, a commitment to the autistic community, hopefully a contribution that makes a difference for someone else. With foresight, maybe between us we can prevent other misunderstood or misdirected children and teenagers from having to enter lives of hell as adults.
Enter lives of hell as adults
My autism went undiagnosed for 43 years despite relentlessly pursuing an idea that there had to be something underlying my problems. Friends with anxiety got over it, while I continued to have over-sensitivity to life, the universe and everything.
Autism went undiagnosed for 43 years
Having been put through the wringer to gain a catalogue of diagnoses, when Aspergers was suggested I was sceptical. Years previously I identified with a man on TV with high functioning autism. He claimed not to have empathy with his wife and children; as this was not the way I had experienced family life, I discounted it. Then one December morning, after doing umpteen tests, something became apparent to both my partner and the psychologist interviewing me.
Something became apparent
As I puzzled over their incredulous reaction to my analytical decoding of facial expressions, there was a revelation. What took me half a minute to assess, my partner somehow instinctively knew immediately, without question. Suddenly I understood something about my life. It was as if something went all the way back to my birth and unravelled, followed by an absolute refusal to accept what I was being told and the need to look for further proof. What really shocked me was the discovery I simply could not recognise the majority of facial expressions. I learned that like a visually impaired person, I compensate by getting emotional cues from context and vocal tone.
My analytical decoding of facial expressions
I am even unaware of some of my other differences; let’s call them ‘blind spots’. And it’s these ‘blind spots’ that let me get myself into trouble without even knowing it. So autism is responsible for the self-conscious logical awkwardness (Mark always trying to figure out Mark), the constant butterflies and the gnawing loneliness and frustration. Yet an Aspergers diagnosis helped me understand I am okay. It helps me communicate more effectively by taking autism into consideration and realising I am actually comparatively normal. I have finally found a place where I fit.
Self-conscious logical awkwardness
Which leads me to a very important question - What would my life have looked like if I had known this forty years ago?
If I had known this forty years ago?
I failed most of my exams at school. I was completely misunderstood and my school report always said I should try harder. My teachers were at their wits end. I was an exceptionally intelligent child but they didn’t have the tools to motivate me.
I have an IQ of 146
According to a recent supervised MENSA test, I have an IQ of 146. Perhaps the only thing between success in my school exams and me were the conditions I was taught in. With less general and more specific guidance I probably would have excelled.
Empowered people make valuable contributions
I appreciate that not all autistic people are as able as I am academically, but awareness and education tailored to any person’s ability will literally empower them. And empowered people make valuable contributions.
A life of substance abuse and self-medication
With understanding and perseverance I have left a life of substance abuse and self-medication where it belongs. I am now much less worried about the occasional faux pas in social situations and have no need to ‘drown it out’.
Predisposition towards sensory overload
My diagnosis gives me access to being responsible for my mental health. I no longer force myself to do things inappropriate for someone with a predisposition towards sensory overload. In most situations my anxiety is manageable. In some strange way, knowing I don’t know what is going on gives me access to knowing something about what’s going on. I no longer have to get things absolutely right. There is an acknowledgement that I am not doing anything wrong given I am autistic. It’s okay.
The problem I now face
Having recently moved to Bedfordshire, the problem I now face is that my new GP doesn’t really appreciate my diagnosis. As an adult with autism, I would benefit from ongoing support. My experience of CBT in Cambridgeshire was of a compassionate and caring psychologist who was able to deliver my therapy in a context I could understand. There really is a need for more mental health professionals like this.
Generally in the dark about autism,
In September last year (2009) I asked for more help with anxiety. By November I had been interviewed and referred for CBT but had already become frustrated and very depressed. It seems Improving Access to Psychological Therapy (IAPT) services in Bedfordshire are generally in the dark about autism, to the point where after a five-month wait to see a therapist I had one session and was promptly referred back to my GP.
Why bother with all these labels
The therapist in question told me to read a book about worry. She went on to say “why bother with all these labels, why don’t you just get on with your life”. My session finished with her telling me “we navigate life like a ship through a dangerous area of sea” with an explanation she was the captain and if I didn’t do as I was told, that she would jump ship. I was understandably bewildered, angry and a bit confused. It took me weeks to find out the metaphor was something to do with NLP.
To promote an understanding of it
So it is back to the GP waiting room, unfiled and ignored, back at the bottom of a stack of files, because health and social care services lack the specialist knowledge of autism to help me. At a recent speech, for the professional launch of the Cambridge branch of the National Autistic Society, I mentioned there is a huge problem. And by accepting there is a problem it starts to promote an understanding of it.
Speak the language of autistic people
We accept people from all over the world and explain their rights to them clearly in any language they care to understand. My doctor’s surgery has leaflets to help people give up smoking in fifteen languages. So we need to train more people to speak the language of autistic people.
I am not a broken human being
Why write off a big part of society, an ever-increasing number of people, who with earlier diagnosis would have better lives? Understanding I am not a broken human being and how I am is normal for a person with my range of abilities on the autistic spectrum has been a revelation.
Vast benefit to humanity
Simply educating people who are treating co-morbid conditions such as anxiety and depression seems vital to therapy being meaningful to someone whose brain works differently. More to the point, treating a difficult child or teenager with an understanding and respect for their differences could be of vast benefit to humanity, not to mention the amount of money it could save long term.
I lost those years
Maybe somebody needs to point out to homogenised Britain that with the right assistance, people can feel more valued, and autistic people in particular can give tremendous value back. Let’s have less people starting to live life in their late forties and more people getting a life in their early teens, when mine started going really wrong. I lost those years and I can’t get them back. But I can give them to the autistic community by telling my story.
Thank you,
Mark Ty-Wharton
You can find out more about Mark and his projects here; his latest book is The Logic of Attraction.
Mark Ty-Wharton Speaks appeared originally at Brookdale, and is reprinted here by permission of the author.
Guest on 04/12/10 in Autism, featured | No Comments | Read More
