Reality check on autism

3rd October 2003 at 01:00
Parents of autistic children "overwhelmingly" want them labelled in their fight to understand the condition and gain extra support.

As MSPs continue to take soundings before the additional support for learning Bill is tabled in the Scottish Parliament, a psychologists' survey shows that parents are not as afraid of labels as some might expect.

Hilary Scott, a South Ayrshire psychologist, told a seminar at the psychologists' national conference: "Parents were scratching their head working out what to do with their children before the label was applied to them. At least the label gave them a handle, rightly or wrongly, and it allowed them to probe the internet and go to the National Autistic Society.

They felt they could then do something."

The study - covering a quarter of all Scottish secondaries in eight authorities, followed up by six in-depth inquiries - found that parents were locked in battle with authorities.

"They wanted clear information about the diagnostic process and the majority felt they didn't get it. They fought their way against authority to try to get something done. They wanted clear information about the process, a clear diagnosis and then recognition of the difficulties their child had," Ms Scott said.

Psychologists across the authorities found that most children were diagnosed in P1 after difficulties at the age of two or three, although some were diagnosed much later in P6 after problems in primary. Parents felt they had to do the pushing.

They were unsure about individualised education programmes (IEPs) and did not join in with teachers on working out targets, most of which tended to be curricular and not social.

"They had quite considerable concerns," Ms Scott said.

Provision ranged from full-time attendance in a school base to full-time in the mainstream and most parents in the in-depth studies were positive about the partnership with schools and liked having a link person.

They appreciated that children could go to a base at intervals and lunchtimes and not to the playground. Parents said there was more bullying in primary school than in secondary.

"They felt it was mainly verbal and they were quite upfront in saying that quite a lot of it was their own child's misunderstanding of banter and not being able to cope with argy-bargy that goes on in the playground and classroom," Ms Scott said.

When asked what their ideal provision would be before their child entered S1, most parents expressed a preference for small schools with a base. "In reality, when they discovered their child was integrating in the mainstream and not in a base, they actually ended up liking that," she said.

Mardi Alexander, an East Renfrewshire psychologist, said many parents felt a sense of isolation and guilt and blamed themselves for their child's difficulties. They did not know initially how to help the school and were concerned about their child's vulnerability.

Including young people with Autistic Spectrum Disorders in mainstream secondary schools: a reality check will be available shortly on www.LTScotland.compdp

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