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Autism: We need the right support, this is a lifelong problem

'YOU feel like a genius," explains 17-year-old Simon Simpson confidently. "But you cannot understand some things and sometimes you don't want eye contact with people.

"You'll have to forgive me if I don't look at you."

The teenager has just been asked what it is like to live with Asperger syndrome – a form of autism he was diagnosed with at four years old.

Most people have absolutely no idea. Even fewer would know what to do if their child became another of the 50,000 people with the condition in Scotland.

"You have to fight for help," sighs his dad David, 43, from North Berwick.

He is one of thousands nationwide to be fighting for change – demanding the Scottish Government legislate for a national strategy for people with autism, to make sure no postcode lottery exists for getting help.

Along with the National Autistic Society Scotland and more than 100 related organisations, calls are being made for a Scottish Autism Strategy Bill, to allow for better assessments and services for those with the condition.

The campaign is appropriately entitled "We Exist".

"We knew very early on something was wrong with Simon," David, a care assistant, explains. "Long before the actual diagnosis. His eye contact wasn't there – we just knew.

"More may be known about autism now, but back then we were very isolated. In P1 and P2, for instance, other parents would see our child acting differently and they didn't want theirs to be friends with him."

Life has not been easy for Simon or David, but the pair battle on.

They live with David's mother in North Berwick, while his ex-wife and his younger son stay elsewhere in the Lothians, allowing the siblings regular contact.

Simon attends Knox Academy in Haddington, where he is due to complete his fifth year in May having secured three Standard Grades in French, History and Modern Studies – achievements for which his dad can barely hide his pride.

Like most people with Asperger syndrome, Simon has an above average intelligence and can hold almost encyclopedic knowledge on subjects he has an interest in, including Chinese politics, drama, animation, model trains and the BBC Doctor Who series.

"He knows everything about Doctor Who," David laughs. "Everything back to the show in the 1960s. Although I used to watch the programme when I was younger, I cannot keep up with what he knows."

As David says, to look at Simon nobody would know he had any problems. He is a good looking teenager with a confident and polite manner, speaking at ease about a condition which is riddled with complexities that can baffle even the most experienced of medics.

But behind the exterior, there are glimmers of a disability which has taken over his life, causing problems with anxiety, social interaction and relationships.

"He can make good conversation, but after a length of time, it has to centre around what he knows about," David says. "He loses interest or cannot keep a conversation going.

"He is clever, but he needs to be able to transfer that, let's say in an exam situation, by interpreting a question."

Just like every parent of an autistic child, David worries about the future and what will happen to his son when he is no longer there to look after him.

That is why the campaign for a national strategy for autism is a fight so close to his heart, believing the Scottish Government has a duty to make sure every child with the condition is given the best possible chance in life – from the very beginning, to the end.

In England, a similar bill was passed last November, meaning people there now have legislation to draw upon to help them get the services their loved ones need.

Autism strategies also exist in Wales and Northern Ireland.

"We all believe we have the support of thousands of people to make this campaign a reality," explains Carol Evans, the national director of the National Autistic Society Scotland. "The Scottish Government must recognise that people with autism in Scotland should not be disadvantaged."

But for now, life goes on for Simon who gets as much help as David and his team of social workers have been able to source. He attends school full-time, is a member of many clubs for autistic people and also attends regular appointments with psychiatrists and psychologists.

This is the result of years of determined searching by Simon's family, along with some trial and error support which has either suited or hindered his development.

"There really should be an information pack for parents as soon as autism is first diagnosed," David says. "People need to get the right support because this is a lifelong problem for a child."

What is around the corner for Simon now is his family's great unknown – and an issue which worries his dad and causes stress to the teenager.

Once he finishes school in May, decisions will have to be made as to whether he can go on to college or possibly employment. The pair have also been researching the option of Simon attending a specialist facility in Scotland that would allow him to spend more time with other autistic people his age, as well as days, weeks or months away from his dad to build up independence.

"At the back of his mind he is worried about missing me," David says. "So we have to come to a decision about this."

Until then, Simon is looking forward to his final months at school, having made it through to the next round of "Knox Has Got Talent" – the students' version of the popular ITV show, Britain's Got Talent.

Perhaps it is no surprise he has wowed his audiences, having auditioned for the actual television programme last year with an array of impersonations which his dad proudly says are "very good".

"It was the proudest moment of my life," Simon explains. "I wanted to show people who I am. I was nervous, but I kept myself together and did my impersonation of Gok Wan and the Joker from the Dark Knight film."

Unfortunately, Simon was not selected to advance further in the show, but he has a motto he tries to follow to help with such disappointments. "My motto is, live your life, follow your heart."

He adds: "The world is not always a good place and it would be good if more respect was shown for people with autism."

For more information on the campaign, visit www.nas.org.uk

WHAT IS AUTISM?

AUTISM is a lifelong disability affecting a person's development, particularly how they communicate and relate to other people.

The condition impacts on how they make sense of the world and can mean they experience over or under-sensitivity to sounds, touch, tastes, smells, light or colours.

Every person with autism is affected differently by the condition and while some are able to live relatively independent lives, others need more support owing to accompanying learning disabilities. Asperger syndrome is a form of autism, where people with the condition are often above average intelligence. While they may have fewer problems with speech, they may still have difficulties with understanding and processing language.

The precise cause of autism is not known and there is no cure. Research shows it may come about as a result of a variety of conditions which can effect the development of the brain, either before, during or after birth.

• www.nas.org.uk

 
 
 

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