My diagnosis story by Steve

In December 1963 my family moved the short distance from Kirkheaton to Mirfield. I started a new school in January of 1964. There was a teacher there who recommended that I, aged 10, see a psychologist, but as Asperger’s syndrome would not be known in Britain for another 20 years and autism was only known in children who could not communicate (actually they can, they just communicate differently) so nothing was diagnosed.

Being told that they couldn’t find anything wrong did not help. I was bullied at school by the pupils and ridiculed by the teachers for my unique spelling. Dyslexia was another thing that was not picked up on. My time at school was not happy.

A warning sign with the letter D in danger crossed out so that it reads. "Anger, high voltage above, keep off."

In all this time it has been perceived that I have an anger problem. But what looked like temper tantrums turned out to be meltdowns. Meltdowns are not connected to anger. They are caused by several factors which include too many demands placed on the person, unexpected changes in routines, sensory overload and social overload. The unfortunate thing is that this sensory and social overload looks a lot like a child having a tantrum, so I appreciate why people think I’m angry when I have a meltdown, I am not angry, but I am overloaded.

After being fired for having a meltdown at work I went for anger management training. In October 2012 I was recommended for diagnosis of Asperger’s Syndrome by a Senior Clinical Psychologist working at Folly Hall*. That diagnosis never happened, I got a letter from the Calderdale and Huddersfield NHS Foundation Trust saying there was no funding available for out of Area diagnosis, the referral was made to a doctor at Manygates Clinic in Wakefield**. That letter felt like them telling me. “Go away, you’re not worth it.”

So no, I have not been diagnosed with autism, despite having been referred by my GP on a recommendation of  a Senior Clinical Psychologist and supported by my GP. The decision I have been refused a diagnosis was not made by anyone with medical or psychological training, but by an accountant who decided I was not worth it. I feel that casually casting people at a vulnerable point in their lives aside in this way is a form of abuse.

So I have never had any help with my autism. Diagnosis is the entry point into finding out what accommodations could be made to help in gaining or staying in work. When shortly after this I became employed again I told them about the referral and that I was self-diagnosed as autistic and was offered accommodations to help me at work, but I had no idea of what I needed. It took the experience of the new workplace to find out that sitting in the middle of a large open-plan office was less than ideal. But I persisted there until significant debts were paid off, and retired early.  On one occasion I had a melt-down on Leeds Station and was refused a train home. It was difficult, I need accommodations to enable me to function well and because of lack of diagnoses I have had to suffer demotions, sackings and resigning in order to leave without being fired all because of autism.

I want to see that this does not happen to other people which is why I am getting involved in autism advocacy.

Steve.

___

*Dr Phil Arthington
**Dr. Lisa Moss, ADHD Service, Many Gates Clinic, Wakefield
I have no problem with either of these people. Dr Arthington helped me and I was unable to get to Many Gates Clinic.

By balaam

I am married with one wife, three grown kids, one cat and no hair.

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