Welwyn Hatfield Families Living with Autism

THERE are an estimated 10,000 people in Hertfordshire who have autism. To mark World Autism Awareness Day, the WHT talked to families and carers who have been affected by a very complex and lifelong condition

MOST people today are probably aware of the existence of autism. Hardly surprising, considering there is an estimated 67 million people worldwide who are diagnosed with the condition.

In Hertfordshire alone, it is thought there are around 10,000 people living with the disorder today.

Nevertheless, a kind of stigma still surrounds the disability, which affects the way a person communicates and relates to the world around them.

In many cases, the disability is "hidden"; a person may appear fully able, but something seemingly insignificant can lead cause them to panic, lose their temper, or even lash out.

To mark World Autism Awareness Day tomorrow (Thursday), the WHT talked to families and carers who have been affected by a very complex and lifelong condition.

"The worst thing that's ever been said to me in public was when Jack was younger and we were in a swimming pool."

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Carol Kelsey is chairman of AAA (Autism, Asperger's and ADHD), a Hertfordshire-wide network for people caring for someone with autism.

Her 14-year-old son, Jack, was diagnosed with autism when he was four.

"A parent approached me and said that Jack should not be allowed to swim with the other children; that he should only swim with the special needs group, which at the time was held about once a month," Carol said.

"The fact that he thought it was a reasonable thing to say was shocking. That, really, is little different to segregation."

But, Carol adds, things are getting better. "It has got better in the last 10 years," she said. "Most people now know what it is, and that it means something is wrong."

"The autistic spectrum is very wide. It comes out differently in each person. Perhaps people should hold back before making a judgement. They react to the behaviour but don't consider that there might be a reason behind it."

ACCORDING to national figures on children diagnosed with autism, there are around 2,700 people in Hertfordshire, aged 0 to 19, with the condition.

But according to Ann Griffin, that doesn't take into account the number of people who have never been diagnosed, or not using services.

Ann is both a parent to two grown up children with Asperger's and a volunteer carer for Harc, the Hertfordshire branch of the National Autistic Society.

"There has to be any number of people out there who are on the spectrum who don't need the services, and are doing extremely well for themselves," said Ann, from Drovers Lane, Hatfield.

"Asperger's Syndrome and high-functioning autism are very hidden disabilities and in adulthood become ever more hidden.

"If parents are caring for their adult children in their family homes it is likely they will only become known to service providers when a crisis occurs, yet early intervention can easily stop a crisis occurring.

"The earlier you get intervention, the better the outcome."

Ann said that while caring for people with autism can be a strain, it can also be very rewarding.

"Adults with Asperger's Syndrome will constantly amaze you. They will challenge your perceptions with their take on life and make you think deeper about situations than you ever would have done before.

"You will also learn a lot about trains, Simpsons, or motor racing than you ever thought you wanted to!"

"Would I change my children? No, what needs to happen is for society to change, we need to be more understanding and accepting of them as they are and harness their strengths and enable them to integrate as part of our diverse society."

For more information on Harc, call 01707 259700.

WITH an estimated ratio of three males to every one female with autism, girls are often overlooked, both at school and in the community.

It is why Lesley Zorlakki, of Pentley Park, WGC, set up the Spectrum Girls Social Group (SGSG), a WGC-based social group for girls in Hertfordshire with Asperger's Syndrome, a form of high-functioning autism.

Lesley, whose daughter Louisa has Asperger's herself, said: "Historically the majority of children diagnosed with Asperger's Syndrome or high-functioning autism are boys, and medics and professionals are frequently more familiar with the presentation of the condition in boys.

"Currently, girls make up around one in four of the autistic spectrum community, and generally have quite different interests from boys with the same diagnosis.

"Women live in a highly complex social environment and girls living with AS/HFA need to feel capable of accessing this community.

"In Hertfordshire these social skills are rarely taught to children in mainstream schools, particularly when these children are academically able.

"Our vision for the Spectrum Girls Social Group will be to bring together girls on the autistic spectrum who are extremely isolated so that they can achieve life-long friendship and support."

The group arranges social events and days out for girls of all ages with Asperger's or high-functioning autism.

For more information contact Lesley Zorlakki on 07714 483485 or email spectrumgirls@sky.com

Facts about autism

*Only 15% of adults with autism are in full time paid employment

*Over 40% of children with autism are bullied at school

*Around two thirds of local authorities in England do not know how many children with autism there are in their area and just two are aware of the number of adults with the condition

* 72% of adults with autism would like to spend more time in the company of other people

* At least 1 in 3 adults with autism say they have experienced serious mental health difficulties due to a lack of support

*72% of schools are dissatisfied with their teachers' training in autism

*66% of parents say that their choice of school was limited by a lack of appropriate placements for children with autism in their local area

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