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Last Updated: Wednesday, 3 March, 2004, 17:10 GMT
Mother sheds light on autism
By Fred Benton
BBC News Online Scotland

Boy drawing
Many autistic children have problems communicating
When Alison Leask's son was diagnosed as being on the autistic spectrum she was left completely in the dark.

After doctors diagnosed the 12-year-old's Asperger's Syndrome all she received by way of advice was a flimsy leaflet through the post.

No-one sat down to talk her through the vast impact it was about to have on her son's and her family's lives.

No-one steered her towards any help groups or organisations which might have been able to help them all come to terms with his condition.

No-one did anything apart from lick a stamp and stuff a piece of paper in an envelope.

Despite being a nurse, Alison found there was very little out there to help her and her son shed some light on his newly discovered condition.

It became very clear when we spoke to families and parents that they had gone through the same experience
Alison Leask
"When my son was diagnosed you were given a kind of leaflet and they basically told me - 'Your son's got Asperger's Syndrome, it might be worth phoning the Autistic Society'," she explained.

"That was about all the information you got at the time."

Over the next few years, she and her son had to find out about autism and the condition he had developed all by themselves as they carried on with their lives in Campbelltown, Argyll.

Between them they managed to work out how to deal with the syndrome on a day-to-day basis without much help from anyone else.

But then a chink of light appeared after Alison came into contact with another mother who had gone through a similar experience with her own son.

Small beginnings

After contacting Maureen Mackintosh, who lived 50 miles away in Lochgililheed, they decided to set up a meeting with families to share their autistic experiences.

On that night three years ago Autism Argyll was born and from the initial six who turned up on the very first evening they now have 65 families as members.

"It became very clear when we spoke to families and parents that they had gone through the same experience - some had had leaflets and some got nothing at all," explained Alison, who is now chairperson of the voluntary group she and Maureen helped set up.

"When you consider the impact the autistic spectrum has on a child's life and that of their family we decided that we would try and develop some information of our own for parents who found themselves in our positions.

The aim now is to take the kit onwards and make them available to everyone across Scotland
Alison Leask
"I don't think you can point a finger to one person about why there has been this lack of information because I bet there are many other people out there who could say the same thing about the condition they have to cope with."

But under the new banner of their support group they managed to gain some funding and put together their own information pack.

After a series of meetings, a lot of hard work and the help of the region's multi-agency team who deal with autism, their kits are now given to every parent in Argyll after their children are diagnosed.

"We just filled the kits with contact numbers, good websites we had found, lists of recommended reading and any information we thought might be useful," said Alison.

Positive feedback

"Some people have come back to us and told it has been a life-saver and one parent told us her son had been diagnosed for six years and she didn't know a quarter of what she found in the kit."

The kits have been such a success Alison is now part of the Scottish Executive-funded team who will help put them in the hands of every parent who needs them across Scotland over the next three years.

"The aim now is to take the kit onwards and make them available to everyone across Scotland," she said.

"With the help of the executive we want to help deliver similar information to packs to every parent whose child is diagnosed with a condition off the autistic spectrum.

"We don't know how we're going to do that yet but we'll find a way."


SEE ALSO:
Autism projects given 2m boost
03 Mar 04  |  Scotland
MMR study doctor calls for probe
22 Feb 04  |  Health
Autism fears over disorder bill
14 Jan 04  |  Scotland
UK autism research 'is lacking'
02 Mar 04  |  Health


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