From Postcode Lottery to Policy Change: Autistic Voices at Westminster

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.

Find here the published notes of the meeting.

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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.

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Based on consultation with Autistic experts by experience, and experts with a learning disability/need facilitated by NDTi, May 2025