From Postcode Lottery to Policy Change: Autistic Voices at Westminster
Aucademy Aucademy
What Autistic People Say About NHS and Council Services
Parliament Asked. We Answered.
Dr Chloe Farahar of Aucademy CIC was invited as one of three Autistic experts to a private, closed meeting with the House of Lords Committee on the Autism Act 2009. The committee asked experts to share their views on how the Autism Act 2009 and national autism strategy have worked in practice, what hasn’t been effective, and what the government should prioritise next.
As this was a private committee session, the findings below reflect general themes discussed during the meeting and are not attributed to any individual participant. Here are the key points raised:
The Current Picture
Whilst some excellent services exist, there’s still a “postcode lottery” of support. Many NHS and council staff lack practical training on working with Autistic people, and when training is available, uptake can be limited by time and resource constraints.
Barriers to Good Care
Participants highlighted several ongoing challenges:
Long diagnostic waiting times (the NICE guideline of 13 weeks has never been consistently achieved)
Emergency services that don’t make adjustments for Autistic people’s needs
Professionals sometimes dismissing Autistic people’s understanding of their own bodies and needs
Particular barriers for Autistic people from ethnic minority backgrounds and LGBTQ+ communities
The Involvement Gap
Too often, decisions are made “about” rather than “with” Autistic people. Families report fighting for promised support that doesn’t materialise, and services don’t always listen when placements or treatments aren’t working.
However, there are positive examples where Autistic people have genuine power in service design and delivery, leading to better outcomes for everyone.
What Needs to Change
Experts called for:
Early support rather than crisis response
Needs-led support that doesn’t require a diagnosis
Real decision-making roles for Autistic people in permanent positions
Better training that goes beyond basic awareness to practical skills
Accountability for organisations that engage in tokenistic consultation
The Bottom Line
The Autism Act has raised awareness of duties to Autistic people, but implementation remains patchy. With some people spending decades in inappropriate hospital settings, and many struggling to access basic support, there’s an urgent need for properly funded, Autistic-led service transformation.
The Committee’s final recommendations could be crucial in shaping the next phase of autism policy beyond 2026.
Based on consultation with Autistic experts by experience, and experts with a learning disability/need facilitated by NDTi, May 2025
