Sunday, October 12, 2008

Asperger Syndrome: To Diagnose Or Not To Diagnose?

A while ago, I was asked for my thoughts on whether parents who suspect their child may have Asperger Syndrome should get him/her diagnosed.

This was a little startling to me, as it had never crossed my mind not to seek a diagnosis for Joe as soon as I had grounds to suspect he had Asperger's. We had been concerned about certain aspects of his behaviour for some time, in particular how readily he became distressed and sometimes violent, and how very reliant he was on routines. Scouting around for answers, I came across this on the National Autistic Society's website. It describes Asperger's, and it describes Joe as accurately as if it knew him personally. It seemed the most obvious thing in the world to seek an official diagnosis.

A year and a half later, being asked to discuss whether to seek a diagnosis provoked thoughts I hadn't even considered, but at the end of the thinking and discussing, I am as convinced as ever to recommend to any parent in this situation that yes, you should seek a diagnosis.

Here are some good reasons why. You, your kid, your other kids, their school, and others in his/her life would have an explanation as to his/her behaviour. You gain an insight into how your kid sees the world. This firstly puts a stop to unhelpful labels of 'naughtiness' or 'anti-social behaviour' or what have you, and secondly can give you and others - such as siblings - a shedload more patience when unpleasant behaviour kicks in. And it prompts you to learn more about Asperger's and develop strategies to deal with it.

'Dealing with it' is not the same as 'treating' an illness. It means adjusting your family's life a little - for example making family routines more predictable - and helping your kid understand the world and learn those social skills that Asperger's kids don't pick up in the everyday course of life.

To do this, you need to learn about Asperger's and autistic spectrum disorders. Read stuff, go on the 'Early Bird Plus' course that we found very helpful. Spend time with child psychologists and others who can explain. And seek out the views of aspies themselves. Look at more radical analyses of autism and challenge the more conventional or negative ones.

So getting a diagnosis for Joe has enabled us to better understand his behaviour and needs. It has also given us access to various support (though not enough!), including such things as referral to the fantastic, inclusive Evergreen Adventure Playground. It may give you access to certain financial and other benefits eg. Joe's after-school club fees are waived because his consultant wrote a letter to say that it is in his clinical interests to attend, we have applied for Disability Living Allowance, and we will soon apply for a Blue Badge.

A diagnosis allows us to apply for flexible working whatever age he is, a right that would otherwise have expired when he turned six (last January). And it gives Joe - and, thanks to a recent European ruling, us - some legal protection under the Disability Discrimination Act.

The diagnosis led to Joe getting a Statement of Special Educational Needs, after an admittedly uphill battle about which I will blog soon. And the Statement should ensure that he gets into the secondary school of our/his choice - very important, as he will be able to go to a school that meets his needs, and one near home so that he does not have to travel miles to school each day. Our two nearest secondary schools are massively over-subscribed, so this is a big weight off my mind.

Some of these would not be factors if government policy were better or society were organised differently. For example, every child should have the guaranteed right to a place at their nearest school, and should not need a Statement in order to queue-jump. After-school clubs should be free to all kids. And flexible working legislation should extend to all workers with caring responsibilities, including all those with dependant kids of any age, special needs or not. But that is not the reality now, and in any case, the other factors still stand.

Of course, the other reason to seek a diagnosis is that your child might not have Asperger's, and you wouldn't want to work to the assumption that s/he had if it weren't the case, and perhaps miss out on addressing other issues or conditions that might need addressing.

I should stress that the decision for an adult about seeking a diagnosis of Asperger Syndrome is probably very different; but when your kid is 4, you make the decisions - and this is one I have never regretted.

Next Sunday: What getting a diagnosis actually involves.