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Asperger’s Syndrome diagnosis - what happens next?

Happy family
A diagnosis of Asperger's Syndrome may seem a relief after months of uncertainty. But what happens next? Catherine Burrows reports.

What is Asperger’s Syndrome?

Asperger’s Syndrome is a mild form of autism. Boys are nearly four times more likely to be diagnosed than girls. The National Autistic Society believes that up to half a million people in the UK have been diagnosed with an autistic spectrum disorder.

The condition affects the entire family as the symptoms of Asperger's control everyone’s lives long before a formal diagnosis. Many parents report that Asperger’s is so subtle that they just ‘feel’ that something isn’t right even if they can’t ‘put their finger on it.’

The condition is often missed until well beyond childhood. But the three vital clues that point towards it are:

  • Communication difficulties
  • Troubled social relationships
  • Impaired creative imagination.

People with Asperger’s Syndrome have a pronounced difference in the development and function of their brain. Medical experts believe it’s a genetic condition, although they’ve never identified a specific gene.

Diagnosis - how does it feel?

A positive diagnosis can feel like an avalanche of emotions have been unleashed with many parents reporting feelings of relief, fear, worry and guilt all mixed up.

Mum Jane always knew there was something different about her son William. “For years people told me he was ‘just a live wire’ or ‘a funny little thing’,” says Jane, “It wasn’t until William’s first teacher thought he had hearing difficulties and referred him for tests that Asperger’s was mentioned.

"After trips to therapists and a paediatrician, we started to uncover the reason behind William’s increasingly eccentric behaviour. It was all such a rollercoaster, we spent the next few weeks feeling confused and upset but the journey towards diagnosis and beyond had finally started. It was a relief that we’d proven to the world that we weren’t terrible parents and we could get on with doing our best for William.”

 

Reaching out

Getting a diagnoses of Asperger's Syndrome can be a relief as it shows that the  child isn’t just naughty and the parents aren’t clueless - two accusations that are often levelled at parents. Diagnosis also means doors open, giving families access to plenty of help and information.
Sarah Lambert, Head of Policy at the National Autistic Society says, “Getting an accurate diagnosis and assessment of need can help ensure that families and people with autism access support and services. The earlier a diagnosis of autism is made, the better the chances of the person receiving the most appropriate help and support.

"With questions about how to get the right support, help and education in place for their child, it is important for parents to be able seek advice from professionals like their GP, social services or their child's school.”

Teaming up with school

If your child has been diagnosed with Asperger's aim to form a solid partnership with the school. Keep a dialogue open with your child's teacher, keeping them updated and involved and make sure the school alert their Special Educational Needs Coordinator (SENCO). The SENCO will act as a bridge between child, parent and teacher, formulating an education plan specifically tailored for the child, and will help access any other help that has been offered.

Other resources:
NAS Autism helpline - 0845 070 4004 (Open Monday-Friday, 10am-4pm)

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