New autism network will provide path to information about the condition

THE plight of families caring for children diagnosed with autism has, for some time, been a matter of concern.

While official statistics estimate there are 4,500 children and 1,600 more adults currently diagnosed with an autism spectrum disorder (ASD) - whether that be autism itself, Asperger's Syndrome or attention deficit hyperactivity disorder (ADHD) - health experts claim, even with greater numbers of sufferers coming to their attention, the reality is that there are many more who go undiagnosed and untreated. The fact is that ASD has gone from being relatively unusual to one of the most commonly diagnosed conditions.

But for many parents and carers, having their child diagnosed with ASD is often just the start of a long and frustrating journey to secure the right sort of treatment for their loved one.

More often than not, services vary from area to area depending on the amount of interest and expertise relating to the condition among local GPs and social services.

The fact is, that for some time, despite the best efforts of those involved in helping ASD sufferers, treatment across Scotland has been uneven. A new project has, however, now been established to help give parents and health workers full access to the information and services needed to supply correct treatment.

The Scottish Autism Service Network (SASN) aims to create an "information hub" offering a database of existing resources and good practice for the condition - just as there are many theories about the cause of condition, there as many treatments, ranging from varying types of behavioural intervention to controversial approaches involving pharmaceutical injections.

In addition to this, it will link up experts in different fields, from the academic sectors such as Strathclyde University's National Centre for Autism Studies, or those directly involved in working with families affected such as social services and GPs, to share information and support collaborations between them.

Essentially, its aim, when fully realised, will be to create a more effective nationwide network to help ensure a consistent and even form of service for families and sufferers.

Alison Leask of SASN says: "I think over the past five years there has been an enormous increase in interest, which is great.

"There is willingness among professionals across Scotland to share information, and [they] genuinely want to improve. But sometimes they are working in their own wee area and not aware of what else is happening on a national scale.

"What we hope is that we can hook these groups into the network, and they can ask: 'look we've done this, we would like to try something like A' and they can go to those in the network, who can say: 'Oh well, so-and-so has tried A, and this is what they discovered as a result'."

But one of the major problems for treating ASD conditions comes from the fact that each sufferer experiences the condition in a unique way, making it extremely difficult to carry out an objective study.

This is further complicated by the fact that each patient reacts to treatments - behavioural or chemical - in a different way, making it almost impossible to create standardised approaches.

Robert McKay, national co-ordinator for the National Autistic Society Scotland, says that, in the end, it is down to giving access to the largest amount of reliable information possible to find what works best for the child.

He adds: "I think in the end, no one organisation can do it all.

"What we want to do with this network is to take all the good strengths that the various groups have and then focus them, so that people can become aware of them. This is about unlocking the door to the information out there."

Creating such a portal to the best options currently available has come at a critical juncture. Typing the words "autism" and "treatments" into Google, the internet search engine, produces 12,600,000 results - an insurmountable amount of information totally unmediated or filtered. As Leask points out, with such a welter of conflicting opinions and ideas, the Scottish Autism Service Network will be invaluable. "Somebody needs to look at this stuff, sorting, sifting and picking out that which is reliable," she says.

"So when professionals or families come to us, they know they will get a pathway to the right people to advise them, give them the existing options and point them in potential ways. That's what we aim to do."

• Details about the Scottish Autism Service Network are at: www.scottishautismnetwork.org.uk


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