Monday, 9 December 2013

Of Aspergers and self-diagnosis

The last post was about how hard it can be to get an Aspergers diagnosis, especially if you grew up in a time or place where the condition wasn't really understood.  The net result of that is that there's a great many undiagnosed Aspies getting about, some of whom will have no idea they're on the spectrum and there's a whole population of other people who are different in the same way they are.

But there will also be people who suspect (or know) that they're on the spectrum, but through choice or circumstance don't have an official diagnosis.  They might be parents of diagnosed children, who recognise their own behaviour and challenges in their child.  They might have had a doctor or specialist suggest the diagnosis, but not gone through the official diagnosis process.  They might have pored carefully over the diagnostic criteria by themselves or with their family.

Fox cubs being sold as household pets
Phaidaux suspected he wasn't like the other cubs
There are plenty of reasons a person might suspect they're on the spectrum, but not go for an official diagnosis.  Money is a massive contributing factor for many people.  Seeing a psychologist can be a pretty expensive exercise, and while you'll get some of that money back through Medicare you have to actually pay it before you can be reimbursed.  Time is another factor.  The stigma still associated with seeing a psychologist is another.  In rural and regional areas, even having access to a psychologist to see may be an issue.

Another deciding factor for some deciding whether to pursue diagnosis is what use it'll be.  Will it provide access to services? (Are there even any services to access?)  Entitlements to benefits or support?  Help at work?  If you don't have a practical need for a diagnosis, is it really worth going through the palaver of getting it?  For some people it will be.  For some it won't.

So, does a person with a self-diagnosis "really" have Aspergers or autism?

If someone's gone through a reasonable process of self diagnosis, and has legitimate, evidence-based reasons for their conclusion, I think it's unhelpful to argue that their suspicion is invalid until a specialist agrees.  Some things should require an official diagnosis - taking part in medical studies relating to autism, for instance, unless they're specifically investigating self-diagnosed people - but just getting through life is an entirely different proposition.

The really helpful thing about my own diagnosis was the insight and self-awareness it brought, and that it led me down a rabbit hole of learning about sensory issues and social gubbins and learning from other Aspies.  If you can do that without having to go through the rigmarole of getting officially diagnosed, good for you.

Some useful links of a self-diagnosis nature:
The Aspie Quiz
Polite Yeti's by-autistics-for-autistics autism criteria
Autism Spectrum Quotient test
How ASD is diagnosed (utterly child-centric, but might be useful)