home Commentary, Culture, Europe Britain does not need an autism registry

Britain does not need an autism registry


On Tuesday 1st August, a story appeared on the BBC website headlined ‘Autism patients: GPs in England urged to keep register.’ NICE, The National Institute for Health and Care Excellence, has suggested that GP’s in England keep a register of all autistic patients.

The first thing that concerns me is that the BBC, our national broadcaster, doesn’t know the correct terminology would be autistic patients. It’s not a disease, it’s not like cancer, it’s a neurotype, it’s who we are, and we should be referred to that way.

So the National Autistic Society wants GP’s to keep a register of autistic patients so in theory it helps provide accommodations and make things easier. That if GP’s know that a patient is autistic they can make accommodations like only seeing autistic patients at quieter times, explaining information clearly and turning down lights for those who have sensory issues. An autistic woman within the article points out how much she hates making calls to her GP, and that knowing about autism mean GP’s could give more time for processing.

The National Autistic Society do a lot of good work, but they are not run by autistic people and do not speak for them.

These are all excellent accommodations for autistic people, but I don’t see the need for a register. A list of people who are autistic does not tell you what accommodations are necessary, I don’t need lights turning down or time to process, but I don’t need an accommodation for that either because my GP’s surgery is in the 21st century and I can book appointments online. Surely if someone registers with a GP in the initial appointment you can discuss accommodations. Whether these are needed by an autistic person or not any GP worth their salt would take these seriously. Or are we say medical professionals will only make an accommodation for a patient if they can prove it is medically necessary?

This also assumes that GPs and their staff will use the information for good. What is to stop GPs and their staff using this information to dismiss or ignore autistic people. Also, autistic people are often easily manipulated, especially younger people, I’m incredibly uncomfortable that a list of vulnerable people could be available for nefarious purposes.

Also what about those who have trouble being taken seriously by GP’s. Women, particularly women of colour, say that GP’s don’t listen, don’t believe them, don’t take their symptoms seriously, and ignore how much pain they’re in. Add autism to that and are we going to have a group of women who are often not able to easily verbalise their pain ignored because the doctor knows they’re autistic and uses that to further dismiss what they’re saying.

What are the repercussions of a Autism Register? NICE says this will remain anonymous within a GP’s surgery. I’d really like to believe them, but the NHS has had more than one security breach.

The other main concern of mine is that if we start with registers of autistic people at GP’s surgeries, where does it end? The purpose in NHS England is supposed to be to help with accommodations and make life easier for autistics people. So if this is successful, and by successful I mean that non-autistic people think it works, what’s to stop it being expanded to cover the whole NHS?

Then if this is a success in the health service, why not expand it to education? That’ll help, schools, colleges, universities provide services. What about a list that employers can access and check if their new hires are autistic just to help with accessibility. Then what about local councils and social care agencies, just to make sure people are getting the best care. Social Services, so they can provide the best support to autistic parents. Why not extend it to give the police access, of course they won’t assume anyone on the register is more like to commit a crime they’ll just use it to help witnesses, victims of crime, and if someone is arrested, it’ll only be used to make sure they’re given full access to their rights.

If you believe that, would you like to buy some magic beans?

This announcement to apparently help autistic people comes at the same time as health authorities in England are now considering not diagnosing adults who suspect they may be autistic. In Scotland, the process takes over a year as the waiting list to even see a psychologist is nearly a year. Why are we compiling a list of autistic people apparently in their best interests when services to diagnose them are being cut, that’s before we get to the support services that are basically non-existent since austerity was brought in.

If the government  really wants to help autistic people they could increase funding to help diagnosis, particularly in groups who are chronically under diagnosed like women and people of colour. They could help increase autism acceptance and move towards the social model of disability.

They could help with support services for autistic adults who have often been left with years of trauma, for young adults who want or need to leave home but need extra assistance being independent. and for parents who have autistic children, especially to stop them being the victims of snake oil salesmen who convince them that they can “cure” autism.

There are many ways that governments can help autistic people. A list of who we are is not one.

Photo: Medill DC/Creative Commons



Jill Rattray

I’m Jill, I’m 41, and I love watching television and I love writing about it. Because of various health problem I don’t get out much, so television and the internet, especially #ActuallyAutistic twitter are my lifeline. I’m passionate about increased inclusion of disabled people in front and behind the camera in television and film. And I am vehemently against disabled mimicry or “cripping up” as it’s better known.