English – WHO MUST TAKE THE BLAME FOR MY RELATIVELY LATE DIAGNOSIS – PART II


George Handley, who has Asperger’s Syndrome, is two years younger than me and had very similar problems to myself when at School. He was referred to a Psychologist by his Infant school in May 1984 but unfortunately for him, the diagnosis didn’t come until eleven-and-a-half years later, in December 1995. Read about his 1984 referral HERE

George Handley is from a working-class background like myself. His original referral came 16 years before mine. However, at least he was referred and they could identify that he was having problems. To quote George, and I am sure he won’t mind if I do, and if he does, well……..

I saw this on his website in May 2001, and I quote…..”I even had special needs teachers for PE. In Textiles, I had trouble threading the needle as threading the cotton through the tiny eye in the needle that I used to think that I needed a microscope to do the job properly. The teacher was disturbed from helping the rest of the class on several occasions to be in aid of my assistance. One may have opted out of that subject at my age as sewing is regarded as a girl’s hobby. But the needle and thread problem always meant trouble for me and almost failure of the completion of my tapestry set as class work”.


Marc Segar, who produced a book called the “Asperger’s Syndrome guide to survival” was diagnosed with high-functioning Autism in 1981 when he was seven years old, when his parents took him to see Elizabeth Newson, a specialist in this area. His diagnosis was later changed to Asperger’s Syndrome.

Marc Segar was born in April 1974, so he was of my generation. I don’t know if he died accidentally in a car crash or if he committed suicide in December 1997 at the age of 23, but if he indeed did commit suicide, the title of his publication is cruelly ironic.

It makes me wonder what Marc Segar would have achieved had he lived. We will never know now of course. He seemed to be a very intelligent man and had a lot of insight into his condition but if he committed suicide then it is obvious, that despite the title of his book, he didn’t fully at least, know how to survive.

After seven years in a special school, Marc Segar was transferred to a special school until he was 14 then he was transferred back to mainstream school until he did his GCSE’s and A-levels then went to the University of Manchester to complete a degree in Biochemistry. Something must have been spotted by, A) His parents or B) The mainstream school he attended. Perhaps Marc Segar’s school or Local Education Authority were progressive and alert to special needs, but his behaviour can’t have been that different from mine.

Segar was from a middle-class background. I am from a solid, strongly working-class background. He probably had better educated, more articulate, and more aware parents than mine, but even so, that is no excuse. If they could have done it for him, they could have done it for me, and other people with AS of the same generation.


I know someone else named Paul, from Facebook, who is nine months younger than me. He was diagnosed with AS in 1988 at the age of 11. There is someone else I was reading about in January 2010 called Marc Fleisher… he wrote “I was born on Wednesday 3rd May 1967, and diagnosed with Asperger’s Syndrome in 1978”.

At the front of the book “Let me in: Access and Inclusion for Children with Autistic Spectrum Disorders”, by Matthew Hesmondhalgh and Christine Breakey, which I read in February and March 2002, Richard Exley, who is also just over two years older than myself, writes in the foreword “Looking back on my own childhood I knew something was different about me even before I received a diagnosis with Asperger’s Syndrome on 17th January 1989”.

Then Paul Drennan, who has Asperger’s Syndrome and was born on Friday 5th December 1980, writes on the Autistic adults picture project “I was initially diagnosed with Aspergers in February 1992”. Stupidly and ridiculously, he was then rediagnosed as General Learning Disabled in September 1994, and then back to Asperger’s Syndrome in November 2001. How can you have AS and be General learning disabled when most people with AS are of average or above average intelligence?

I rest my case. Nothing further to state m’lud, apart from, whilst obviously much more could, and should have been done regarding myself, and that I was clearly neglected by the Infant and Junior schools, and especially Secondary school I attended, I recognise and realise that I have to move on with my life. I am not the sort of person who forever lives in the past, and anyway, I can’t alter what has happened.

What happened to me in the past however, provides an example of what can occur when ignorance and negligence occur regarding Autism and AS. I hope my experiences haven’t been in vain, because I would like them to be used as a further reason to diagnose people with AS and Autism as soon as possible, with no delays whatsoever. The experiences of myself and various other people in life, undiagnosed with AS or Autism until their 20’s or 30’s, also show why early diagnosis is essential.

You may say to me “At least you know you’ve got Asperger’s Syndrome. You got diagnosed when you were 23 years, almost 24 years old. Many people have been 50 or 60 years old when they learned they had it. There are also many who didn’t find out at all”. My response to that is no-one should be diagnosed so late and if they are diagnosed at 50 or 60 years of age then I feel sorry for them.

I am also grateful that I had to fight to get a diagnosis in February 2000 instead of having to do so in February 1950 or February 1970 and also, it wasn’t a long fight either. I didn’t have wait 12 or 18 months for a diagnosis. I dread to think what would have happened if I had, because by this point I had reached breaking point. I regard myself as being fairly mentally tough and resilient, but everyone has their limit to what they can take, and I had reached mine by now.

Regardless of what anyone may say, if diagnosed at early school age, a full and comprehensive assessment of difficulties, weaknesses and strengths could be made. School’s, mainly NT children and Teachers, may find people with Asperger’s Syndrome or Autism difficult to understand but they will find them even more difficult to understand if they are unaware of the condition or unaware of the fact that a pupil has got either condition.

It isn’t a case of labelling or not labelling but supporting the individual with AS or Autism. I would have responded better if I had been placed within a quiet, well-organised environment, at Infant, at Junior and at Secondary School.

You may ask “What difference would it have made if you were diagnosed in 1991 or in 1990 or in 1989 or even 1982?”. I think of how I have improved since I learned of the condition. Just think of the improvements I would have made had it been 10 years earlier? They would have even been much greater than the ones which I have made in recent years. A diagnosis in 1991 or earlier could have helped me enormously in my life after I left school. It would have made me able to understand myself a great deal earlier than when I did.

If we can diagnose people who have Autism or AS fairly early then it will save a lot of trouble all round. The child learns to understand him or herself and realise what the problems he/she has and learn, with adult help, to avoid them. Those who have AS need detailed, explicit and repeated Teaching about this. They could be taught, or even need to be taught, not to say things what people regard as socially embarrassing. Things such as “That man’s fat isn’t he?” or to Teachers “Why are your lessons so boring?”.

 

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