Autism Provision by NHS Primary Care Trust 2012

Update, 2026: I had not finished uploading all the responses when this project ended in 2012. The Health and Social Care Act 2012 abolished the Primary Care Trust system and replaced them with the Clinical Commissioning Groups, rendering all of my work irrelevant at a stroke. In frustration, I abandoned the project halfway through. But it’s now 2026, and Codex is infinitely more patient than I am, and has now completed the table using the original correspondence. Entries and documents added in 2026 are shown in a slightly different shade of blue. The information describes NHS provision in 2012 and is kept here as a historical record.

Obtaining an autism assessment through the NHS is a byzantine process which varies hugely from postcode to postcode. I started a project of obtaining details of provision of adult and services for adults and children from every Primary Care Trust in the country, so that parents and autistic people could find out how best to access NHS services.

I asked each PCT, or regional equivalent, to answer six questions:

1. How many adults they have with a diagnosis of autistic spectrum disorder (with any separate statistics for Asperger’s, HFA, LFA) in the area;
2. How many children;
3. What diagnostic services are available to a) adults and b) children;
4. What agencies or teams exist that work with autistic people, provide support/services, strategise, etc.
5. An email address/website for each of these agencies or teams where possible.
6. What the typical process should be for an adult in the area first asking their GP for an assessment for autistic spectrum disorder to receiving a diagnosis/support.

Each PCT seems to do things differently, with some telling me that the NHS isn’t responsible for keeping statistics on autistic people to the lovely person who created a table for me indicating number of registered autistic adults in their area, by form of autism, for every year since 2007.

Key

Contacted: The PCT has been contacted with the Freedom of Information request

Acknowledged: The PCT has sent a notice that the 20 day time period for the FOI has begun.

Responded: The PCT has sent the information requested or has not been able to find it.

Followed up: The PCT has not acknowledged the request, or has but never replied, and has been contacted again.

See…: Some PCTs have outsourced their FOI obligations to other PCTs, who have responded on their behalf.