Sign up to updates, or get involved, with the Kent & Medway Mental Health NHS Trust: Learning Disability & Autism Programme – Transforming Care in Kent & Medway

Find out about the Kent & Medway Mental Health NHS Trust (KMMH): Learning Disability & Autism Programme, which is actively working to transform Care in Kent & Medway.


About the Programme Lead
: Dr Chloe Farahar (they/she) is an Autistic academic, researcher, and educator. They are the KMMH Project Manager for the Learning Disability & Autism Programme, coordinating activities to improve how our services support Autistic patients and patients with a learning disability. Chloe also created the KMMH Transforming Autistic Healthcare webinar series, available on iLearn for NHS staff under “neurodiversity”, and they created an open-access page to help professionals, Autistic people and people with a learning need learn their profile to empower them to take control of their healthcare. 


Hear from Dr Chloe here, talking about their role:


If you or your team would like to:

  • receive occasional updates on the Learning Disability & Autism Programme to improve the mental health services for Autistic people and people with a learning disability across Kent and Medway;
  • find out about opportunities to support or collaborate on programme activities (starting 2026);
  • stay connected with Kent and Medway Mental Health Trust’s work to improve services for Autistic patients and patients with a learning disability

…please provide your details on this Microsoft form.


If you would like to understand a bit more about the Learning Disability and Autism Programme Plan, here is an outline about it: 


And we have an Easy Read version: 


Dr Chloe looks forward to hearing from you 😊


 

What are the outcomes for the Autism Act 2009 review, held 2025?

Aucademy’s Dr Chloe Farahar was invited to a closed session to contribute to the Autism Act 2009 review, held between April and June 2025 – and we wrote about what their session discussed, here, and the more detailed Westminster meeting notes and questions asked can be found here.

In this blog, we summarise what the 254 page report of the review sessions found.

Time to Deliver: Making the Autism Act Work for Autistic People

November 2025 | The Aucademy Team

The Verdict: Progress Without Purpose

A landmark House of Lords report has delivered a powerful verdict on sixteen years of autism policy in England. The message is clear: whilst awareness has grown, outcomes for Autistic people have not improved. It’s time for genuine transformation, not just tweaks around the edges.

When the Autism Act was passed in 2009, Autistic people were largely invisible to services. We fell through gaps between mental health and learning disability provision. The Act changed that – or at least, it was supposed to. The Select Committee’s findings tell a different story.

Simply put, the system isn’t working. Over 172,000 people are waiting for autism assessment, with many facing delays of two years or more. The NICE guideline says thirteen weeks. The reality? Some people wait five years. And when they finally get that diagnosis, post-diagnostic support is virtually non-existent. As one witness told the Committee: “You get your diagnosis and fall off a cliff.”

What Actually Matters: Beyond Awareness

The report exposes a fundamental problem with how autism is approached in public services. We’ve moved from invisibility to awareness, but awareness without acceptance is meaningless. Autistic people still face a 20-year life expectancy gap. Eight in ten experience mental health issues. Only three in ten are in employment. These aren’t just statistics – they represent lives constrained by systemic failures.

The Committee heard powerful testimony from Autistic people and those who support them. The message was consistent: public spaces remain inaccessible, healthcare is often traumatic, education excludes rather than includes, and support arrives only at crisis point. One particularly striking finding? Autistic children are five times more likely to be excluded from school. This isn’t about “challenging behaviour” – it’s about environments that disable.

A New Strategy: From Crisis to Prevention

The current autism strategy (2021-26) set ambitious goals but, after its first year, successive governments produced no implementation plan or funding. The Committee demands better for the new strategy launching in July 2026.

Their vision is transformative: a shift from crisis-driven to preventative support, from diagnosis-dependent to needs-based provision, from segregation to genuine inclusion. Importantly, they insist that Autistic people must be meaningfully involved at every stage – not just consulted, but leading the change.

Key Changes That Matter

The Committee makes over 80 recommendations. Here are the ones that could genuinely transform Autistic people’s lives:

Public Understanding: A government-led campaign to improve understanding and acceptance, with mandatory training for all public-facing staff. Aiming to move from “autism awareness” to creating accessible environments and challenging damaging misconceptions.

Healthcare Revolution: Digital flags in patient records, hospital passports, and mandatory Oliver McGowan training. The goal? Making reasonable adjustments standard practice, not special favours. The Committee also demands action on the shocking statistic that Autistic people die 20 years younger than non-autistic people.

Education Transformation: An end to off-rolling and illegal exclusions, whole-school approaches to inclusion, and accountability measures with teeth. Schools must become places where neurodiversity is valued, not punished.

Employment Support: A specialist jobs service, expanded supported employment, and incentives for employers to make genuine adjustments. The economic case is clear: every pound invested in employment support returns four pounds to the economy.

Community Support: Investment in preventative, stepped support that keeps people out of crisis. The Committee found that crisis-driven approaches cost more in both money and lives. Early intervention isn’t just humane, it’s economically essential.

Making This Information Accessible

At Aucademy, we believe information about Autistic people should be accessible to Autistic people. That’s why we’ve created two summary versions of this important report:

• Standard Summary: A comprehensive two-page overview covering key findings, recommendations, and implementation requirements. Perfect for professionals, advocates, and anyone wanting detailed insights.

• Easy Read Summary: An accessible version using clear language, visual symbols, and simple tables. Designed specifically for people with a learning disability and/or Autistic people who prefer information presented simply and clearly.

Please share them widely – this information belongs to our community.

What Now? From Report to Reality

Reports don’t change lives – action does. The Committee has provided the evidence, the framework, and the mandate. Now it’s up to all of us to demand implementation.

For Autistic people and our allies, this report is validation and ammunition. It confirms what we’ve been saying for years: the problem isn’t autism, it’s the disabling environments and systems we navigate. Use this report in your advocacy, your complaints, your campaigns for change.

For professionals, this report is both challenge and opportunity. It demands we move beyond awareness to genuine culture change. It requires us to centre Autistic voices, not just consult them. And it insists we stop treating reasonable adjustments as optional extras.

The Time is Now

The report’s title – “Time to Deliver” – captures the urgency. Sixteen years after the Autism Act, Autistic people are still fighting for basic rights and recognition. The Committee has thrown down the gauntlet to government, to services, to society.

As the report states: “Autistic people are as diverse as our country and represent an integral, valuable part of it.” It’s time that diversity was celebrated, that value was recognised, and that Autistic people could thrive, not just survive.

The new autism strategy launches in July 2026. Between now and then, we have a window to influence its development. The Committee has given us the evidence and the framework. Now we must ensure the government delivers genuine transformation, not more empty promises.

Because quite simply, Autistic people have waited long enough.

Access the Summaries

Download our accessible summaries of the House of Lords Select Committee report “Time to Deliver: The Autism Act 2009 and the new autism strategy” from the Aucademy website. Available in standard and easy-read formats.

Reference

Select Committee on the Autism Act 2009. (2025). Time to Deliver: The Autism Act 2009 and the new autism strategy (HL Paper 205). House of Lords.

About Aucademy CIC: Aucademy provides Autistic-led support, education, and advocacy. We believe in Autistic culture, community, and the power of lived experience to drive change.

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.


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

Dr Chloe Farahar for the BBC Newsnight piece: “Tensions build between autism researchers and the Autistic community”

Only a minute of Dr Farahar’s interview could be included in the BBC Newsnight piece: “Tensions build between autism researchers and the Autistic community”. They also discussed during the 45 minutes not aired:

  • The need for intersectional research to represent Black Autistics and Autistics of Colour
  • Research methods that afford non-speaking Autistics to have their perspectives included in research
  • How they hear from families with Autistic young people with high support needs, and how families’ priorities are also at odds with non-autistic “autism” researchers, where families want:
    • better services;
    • better/adapted therapies;
    • medical support, and research for co-occurs like epilepsy and apraxia (difficulty or inability to speak)
  • Dr Farahar also talked about how no research that is about human beings can be knowledge/science for science’s sake – no researcher or human phenomena under study exists in a vacuum with no macro consequences/implications
  • Dr Farahar explained how they can perspective take with the difficulties non-autistic “autism” researchers are experiencing following scrutiny from Autistic people, families, and allies, but that they will always prioritise the needs and emotions of families and Autistic people themselves who are struggling to survive (where the greatest cause of death for Autistic people without a learning disability is suicide and is epilepsy for Autistic people with a learning disability)

Sadly, with the limited representation of Dr Farahar’s key points, the YouTube comments are distressing, ableist, and reactionary. We recommend avoiding the comments section.

Tensions build between autism researchers and the autistic community – BBC Newsnight