THE BLOG

Should People Register as Autistic?

27/04/2016 14:04

As part of my work on the Department of Health's National Autism Programme Board (APB), I am fortunate to work with Dr Carole Buckley, who is the Royal College of General Practitioner's (RCGP's) autism champion.

Anyone who is autistic, or is a family member of someone who is autistic, has probably come across GP's who don't understand autism. However, Carole has been working tirelessly with the RCGP to make sure GPs are better equipped to support autistic people and their families. I was very impressed by the amount of work she and her colleagues had achieved. You can read the minutes of the October 2015 meeting of the APB by clicking here.

Carole told me that it might be possible to arrange a register of autistic people, which could mean they would benefit from annual health checks, as many have co-occurring conditions.
A register would also tell us how many autistic people have epilepsy. You might be aware of a report that was published last month about the premature deaths of autistic people. One of the leading causes of death in autistic people with learning disabilities was epilepsy. Maybe if we knew how many people were autistic, had learning disabilities and had epilepsy, we might be able to improve the support for this group.

The idea of a register has quite understandably been met with some resistance from the autism community, many of whom fear the disclosure of their diagnosis may result in prejudice. Many who see autism as a difference not a condition or disorder are uncomfortable with being identified on a register in this way.

As I spoke to Carole I realised that she wasn't talking about a traditional register, like the ones at school that contain your full name, or the electoral registers that contain your address. A register means something different in this context.

Let me try to explain. GP's computer systems have things called READ codes, they are put on to people's notes. For example there are READ codes for gender, age band (e.g 18-25), whether you are a smoker or non-smoker, aswell as specific health conditions.

The READ codes used in each of the UK's GP surgeries are collected by a central computer program that's essentially like a magnet for READ codes and doesn't collect any of the other information. For example, telling your GP you're depressed because your partner left you would mean you get a depression READ code added to your notes. However, the central computer system won't pick up and store the information about your ex-partner, just the depression READ code. You also have the choice to opt out at anytime.

The information collected is stored at the NHS data centre and can only be accessed by individuals who have been given permission to access it. These people have to explain why they need your information and what they plan to use it for. This means other agencies such as social services, schools etc would not have access to this information.
I am curious to know what other people think, so I set up this survey click Here to got to it . It is anonymous and should only take 5-10 minutes.

I will write a blog post about the results of the survey and also pass the results on to RCGP, and the APB.

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