Thursday, November 10, 2005

When Autism Isnt A Disability

Marc Fleisher, who suffers with autism, tells Jeremy Campbell how he has learnt to rise above the condition.

Marc Fleisher sits opposite me doing something which would have been impossible for him 20 years ago He is demonstrating how an object placed near on edge of a table can cause great anxiety.

He does so in an extremely articulate way, and opens my eyes, illustrating clearly the challenges he has faced during his 38 year life.

This remarkable man has a degree in maths and a masters, both from Brunel University, and has just completed his second book.

His first was an autobiography, which was in his head, chapter by chapter, in perfect order before he wrote it. The publisher barely changed a word from his first draft.

The second book, which has just been published, was harder work. It is a guide on how to deal with life, for people with autism.

Marc, who has lived in High Wycombe all his life, has mild Asperger's Syndrome, a form of autism which affects thousands of people.

He has been the victim of abuse, of misunderstanding, and of misdiagnosis. But with lots of support, and much determination and passion, he has achieved what even a few years ago, was thought to be impossible.

He is now an experienced public speaker who campaigns for rights, research, funding and understanding of autism.

"The most important thing is that people with autism deserve the same rights as everyone else. I'd like people to know that if they have any form of disability, it does not mean that you can't set yourself high goals and reach them."

He lost his mother to cancer in 1991, but she, and other members of his family, provided an essential support that has helped him succeed in so many areas.

He says: "My family have been very supportive. They always believed I that I could go further."

This contrasts to other people, including the doctor who diagnosed him as "mentally retarded" when he was young.

He was eventually properly diagnosed, and attended the Chinnor Resource Unit for autistic children through his school years. It provided exactly the right sort of help, but there are problems in the support system.

"When youngsters with autism leave school, there is often a great big void. All the support they get through their school years is gone, and we need that gap to be filled up. In many cases that can only be done through good support from the Social Services."

There is still a lack of understanding about the condition.

"The biggest gap in my life has got to be socially. I am very lonely sometimes. It is a loneliness that almost never goes away. I feel stuck on a desert island, like I can talk to my family on a radio, but don't ever get to see someone for years and years. That fear, that incredible isolation for years, that's how it feels."

There are other problems which seem less serious, but which present constant challenges.

"Autistic people take everything literally. I went for a drink with a friend in a pub, and he offered to pay for the drinks by saying "It's on the house, mate". This completely threw me, and I looked on the roof for the drinks, and was the laughing stock of the village. I only found out a few hours later the true meaning of it. So called grey areas can be a problem. If you give instructions to somebody autistic you have to be very precise.

The example of the object falling off the table describes what he calls the depth of feeling.

Marc explains: "This is a very important point and can often be overlooked. If I put an object on the edge of the table, so it may or may not fall off, an autistic person looks at this object, and sees that it might fall on the floor and make a loud clatter. Many autistic people are susceptible to loud sounds. So they will look at this object, and it will be illuminated in their mind."

He compares this to a person knowing a loved one was far away hanging off a cliff, and that they had to make it there to save them. When the autistic person makes it to the precarious object, he says: "The incredible relief and the happiness, has exactly the same intensity of feeling as (rescuing a loved one from falling off a cliff)".

He does stress that many people do not have autism as acutely as others, and that there is no known cure for the condition, so the focus must be on helping people manage and live with the anxieties.

With the help of friends he has learned to do many things in life. One hurdle was going shopping. His fear was that he would forget to pay, get arrested and be taken away. He calls that a worry chain, a sequence of events which leads to the ultimate concern separation from loved ones, or being in a situation out of his control. His other fear was getting on the the Tube and getting across London. He can now use the whole Tube network, and his next objective is to get on the buses.

The story of his life, and his second book, a guide to dealing with life with autism, are incredible achievements, but more importantly are very well written, and great to read, either for advice and guidance, or just as an insight into a slightly different, endlessly fascinating world.
When Autism Isnt A Disability (from Bucks Free Press)

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