Autism Action

We bring together compelling evidence from autistic people and world-leading research; and use it to create action that improves autistic people’s lives.

[Autism Action @_AutismAction]

Not again!

In a bizarre repetition of what happened with the LeDeR report last year, the APMS Autism Chapter has been withdrawn.

The APMS - Adult Psychiatric Morbidity Survey - seeks to estimate the prevalence of various conditions, including autism. We've said its methodology in relation to autism prevalence is flawed, even before this new problem.

Read about methodological issues here (https://t.co/YQQ7T4dcf0)

and via Dr Rachel Moseley's academic critique here (https://t.co/PoilQ3oYdO)

The Independent Review into Mental Health Conditions, ADHD and Autism also acknowledges these methodological issues - see page 24 of the interim report: https://t.co/5ZAXrZgmA6

We now await further information about the issues that have been identified and urge the team running the independent review to seek answers in time for their final report. How can autism prevalence be understood with confidence when the official national data have been withdrawn?

#autism #prevalencereview

[Autism Action @_AutismAction]

#ThankYouThursday We’d like to say a big thank you to Leigh and Robyn for choosing to run the AJ Bell Birmingham Run in support of Autism Action on 3rd May 2026.

Your support means so much to us and we’re truly grateful for the time, energy, and miles you’re putting in.

Could you help us raise funds to support our charity? Find out more here: https://t.co/QXvj4ojaZw

[Autism Action @_AutismAction]

We’re Hiring!

Are you ready to take the next step in your fundraising career? We’re looking for a passionate Fundraising Officer, with at least one year’s experience in a similar role with a charity or nonprofit organisation.

This role offers a fantastic opportunity to gain valuable experience in a fast-paced fundraising environment.

For more information please visit: https://t.co/A8Hl7uwp7W

Closing date: midnight, 21st April 2026.

[Autism Action @_AutismAction]

There’s still time to sign up as a Partner: https://t.co/tZcUw3TKEK

[Autism Action @_AutismAction]

Six weeks to go!

13-20 May: the week that hope built. A week to thank the hopefuls and do something hopeful yourself. Because hope always counts.

We’re proud to be one of hundreds of charities, community and faith groups that have come together to make A Million Acts of Hope.

There’s still time to sign up as a Partner - link in comments.

Because no one can say the UK is divided when so many of us come together to show we’re not.

[Autism Action @_AutismAction]

Have you signed up yet? The more people share their experiences, the harder the findings will be to ignore.

[Autism Action @_AutismAction]

Let's gather the evidence the Government needs to take action!

We’re working with a neurodiverse team of researchers to develop a survey for anybody who’s asked for an autism or ADHD assessment - adults or children - in the last six years.

The survey will ask about reasons for requesting an assessment and experiences while waiting.

The more people who complete the survey, the more powerful the evidence wll be, and the stronger the case for Government to act.

Please share this with anybody likely to be interested, including organisations and professionals who provide assessments - because they can share with many more people.

Visit https://t.co/vp7p6JVhZp to register your interest and hear when the survey is ready.

#autismassessment #adhdassessment #autism #adhd

[Autism Action @_AutismAction]

If you're passionate about improving life for autistic people, with a background that's relevant to suicide prevention, we'd love to hear from you.

This is a challenging post working on a distressing topic. It's absolutely not for everyone, so we encourage you to think carefully about that before even reading the recruitment pack.

However, for the right person it's a role we expect to be uniquely rewarding and a chance to be part of saving lives. We are part of bringing hope to people when they need it.

Autism Action has a supportive team and formal support systems in place.

For more info, visit https://t.co/LIhkE9iT4Y

Closes 8am March 23rd 2026.

#autism #autismjobs #suicideprevention

*** If you are struggling now and looking for support, you can find ideas on our resources page: https://t.co/OMquXbQr5r ***

[Autism Action @_AutismAction]

Tried to get an autism or ADHD assessment in the last few years?

You can complete this survey and make your experiences count *even if you were blocked at the first stage and no referral was ever made*.

Sign up to be among the first to hear once it's ready.

https://t.co/vp7p6JVhZp

[Autism Action @_AutismAction]

Let's gather the evidence the Government needs to take action!

We’re working with a neurodiverse team of researchers to develop a survey for anybody who’s asked for an autism or ADHD assessment - adults or children - in the last six years.

The survey will ask about reasons for requesting an assessment and experiences while waiting.

The more people who complete the survey, the more powerful the evidence wll be, and the stronger the case for Government to act.

Please share this with anybody likely to be interested, including organisations and professionals who provide assessments - because they can share with many more people.

Visit https://t.co/vp7p6JVhZp to register your interest and hear when the survey is ready.

#autismassessment #adhdassessment #autism #adhd

[Autism Action @_AutismAction]

Let's gather the evidence the Government needs to take action!

We’re working with a neurodiverse team of researchers to develop a survey for anybody who’s asked for an autism or ADHD assessment - adults or children - in the last six years.

The survey will ask about reasons for requesting an assessment and experiences while waiting.

The more people who complete the survey, the more powerful the evidence wll be, and the stronger the case for Government to act.

Please share this with anybody likely to be interested, including organisations and professionals who provide assessments - because they can share with many more people.

Visit https://t.co/vp7p6JVhZp to register your interest and hear when the survey is ready.

#autismassessment #adhdassessment #autism #adhd

[Autism Action @_AutismAction]

As members of the Disabled Children's Partnership (DCP), we fully support their response to the Government's announcement yesterday about long-term plans for 'inclusion units'.

It's right that the DCP are seeking more understanding about how this would work in practice - they should be fully accredited, accountable, staffed by specialists and inclusion should mean all children being fully involved with the life of the school. Let us know your thoughts, we want to understand how our community feels about the SEND crisis.

[Autism Action @_AutismAction]

Autistic people's priorities for suicide prevention - new research published today.

*Top 10 priorities*

1. Train professionals (especially in healthcare) to understand suicide, trauma, burnout and mental health issues in autistic people.

2. Autism-specific professionals, services, interventions and tools.

3. Tackle societal ignorance, prejudice and discrimination related to autism, mental health and suicide

4. Make existing services and support faster and easier to access, with better continuity of care and non-speaking ways to access help.

5. Focus on improving autism assessment and diagnosis across the lifespan.

6. Facilitate peer support (in-person/online), one-on-one mentoring or peer mental health support.

7. Focus on improving mental health with continuous, preventative support, including help with self-esteem and emotions.

8. Develop strategies for coping with suicidal thoughts and improving wellbeing.

9. Provide social support, non-judgemental and empathic.

10. Improve support/interventions in the education sector: flexible, person-centred, and strengths-based learning.

Much more detail and the full paper can be found here: https://t.co/RrjAnMqc3r

We initiated this work to guide our use of charity resources to best meet the community's needs around suicide prevention.

Directly in line with these priorities, Autism Action is already working with @PAPYRUS_Charity to deliver crisis support from staff trained to support autistic people, which will be co-created with autistic people and those who support them. We'll develop additional plans to influence Government and national services to deliver the priorities that fall under their remit, and we'll continue to plan additional projects to act on these community preferences.

Huge thanks to everyone who helped shape the surveys, analyse and write up the results, to the thousands who took part, to Dr Rachel Moseley of Bournemouth University who led the study, to the Autism Research Centre at the University of Cambridge, who had ultimate responsibility for the research, and to the wider (neurodiverse) project team.

#autismresearch #suicideprevention #autism

[Autism Action @_AutismAction]

If you're a freelance social media specialist with a really good understanding of the issues faced by autistic people and those who support them, read more about this opportunity via https://t.co/LIhkE9iT4Y

We'd love to hear from you!

#autism #autismaction #freelancesocialmedia #autismjobs

[Autism Action @_AutismAction]

The updated LeDeR report has been published today following its retraction in December last year, just a few months after its much-delayed appearance.

Deaths of people with learning disabilities classed as avoidable have not decreased as much as was previously reported – having reduced to 40.2% rather than 38.8% - but of course even the lower number is still far too high.

For autistic people without a learning disability, numbers remain too low to draw meaningful conclusions and still no action is being taken to address that.

Finally, the contract for national analysis of LeDeR data ends later this year, after Kings College London reports on the 2024 data. We are now in 2026. We have repeatedly raised this with NHS England. Empty Governmental promises to review deaths cannot be taken seriously when no contract is in place to report on the 2025 data and no action is being taken to address major limitations that have been apparent for years.

We will continue to work with autistic people, those who support them, and other autism charities to raise this unacceptable issue with Government and push for meaningful action.

Read more via https://t.co/hVPMQ2w4Z0

#LeDeR #autism #autismaction

[Autism Action @_AutismAction]

Image reads: Today the Government has responded to the House of Lords' report, 'Time to deliver: the Autism Act and the new autism strategy. As the autism charity sector, we stand together to say the Government's response is unacceptable.

You can read the full joint statement, the House of Lords report and the Government response via https://t.co/VEiEG0orJ3

Our CEO, Tom Purser, says:

“We have a real opportunity here to address over 15 years of failure under the Autism Act 2009, but the Government has failed to rise to the challenge. In its report, ‘Time to deliver’, the House of Lords Committee laid out what’s needed in a new autism strategy when the existing one runs out in June. Today’s Government response does not even commit to a timeline, relying instead on leaving the existing strategy in place – a strategy that has clearly not been fit for purpose.

“The extent of inequality autistic people face every day is shocking. The failings across all areas of government responsibility, from education and employment to health and social care, can only be addressed through specific actions with an autism focus. Relying on mainstream reform such as the NHS 10 Year Plan will continue the pattern of autistic people being overlooked and discriminated against.

“The stakes are too high to allow the current situation to continue. Autistic people face a reduced life expectancy, and suicide is understood to be the leading cause of death for autistic people without a learning disability.

“We urge the Government to reconsider – to commit to delivering a new autism strategy within a specific timeframe, in line with the House of Lords recommendations, and to make that a matter of the greatest urgency. Autistic people deserve better.”

#autismact #autism #autismstrategy #timetodeliver

[Autism Action @_AutismAction]

This week, we had the honour of co-hosting a parliamentary event with Jessica Toale, MP, to highlight the sometimes catastrophic systems failings faced by autistic women and girls.

Content warning: suicide, bereavement

We were joined by autistic women, of course, and those who support them, including bereaved mums Lindsey Bridges and Sharren Bridges (Jen's Acorn). A huge thank you to Lindsey and Sharren for talking to us about your daughters Lauren (Lolly) and Jen. Thank you also to Mary Doherty and Chris Ince for your powerful and moving contributions, and to Rachel Moseley and Lisa Wolff ND for your ongoing support with this work. We can't name everyone, but we are extremely grateful to everyone who joined us in the House of Commons. That included a great many MPs, who I'm sure were moved by the stories they heard, and now far more aware of the fact that these are not isolated, rare cases.

If you look closely you can also see that we were able to meet with Baroness Merron, the minister with responsibility for mental health and suicide. We are grateful to Baroness Merron for listening to the experiences of the group and committing to discussing those with Zubir Ahmed, MP, who has ministerial responsibility for autism. We will now need to continue those conversations to ensure that autistic women and girls are better recognised as such, to end misdiagnoses of personality disorder and mental health conditions, and to ensure that autistic women and girls receive the autism-specific support they need and deserve, so they can thrive.

#Autism #mentalhealth #misdiagnosis #autisticwomen #autisticgirls

Note: We continue to work with and advocate for *all* autistic people. This was just one event with a focus on women and girls.

[Autism Action @_AutismAction]

We’re a proud member of the Disabled Children's Partnership (DCP) @DCPcampaign - a coalition of over 130 organisations that campaign for better support across education, health and social care support for disabled children, young people and their families in England.

They have an important survey for parent and carers linked to their ‘Fight For Ordinary’ campaign about education reforms, it’s open until the end of the week: https://t.co/nWrKVk8XHL

There are 9 sections and should take between 5-10 minutes to complete, a little longer if you have more than one disabled child.

The results of the survey will help the DCP campaign and engage with policy makers to ensure that this opportunity for reform is not wasted.

[Autism Action @_AutismAction]

We are delighted to congratulate Autism Action Trustee Dr Lewis Owens on being awarded an MBE in the King’s Honours List.

Dr Lewis Owens, a successful charity fundraiser, lecturer and author has been awarded the Member of the Order of the British Empire (MBE) for Charitable Service.

The award, announced in the King’s New Year’s Honours List, celebrates Lewis’s dedication to supporting voluntary services, particularly his role as Trustee with Autism Action since 2016 (previously known as the Autism Centre of Excellence).

[Autism Action @_AutismAction]

We’re Hiring!

We have an exciting opportunity for a Fundraising Assistant to join our team and support our charity’s growth. For more information please visit: https://t.co/A8Hl7uwp7W

Closing date: midnight, 19th January 2026
#hiring #FundraisingJobs #CharityJobs #autism #AutismAction

[Autism Action @_AutismAction]

We’re Hiring!

Passionate about inclusion? We’re recruiting an Active Autism Alliance Project Lead (two-year fixed term contract) to deliver Phase 1 of a ground-breaking autism and sport initiative, funded by Sport England.

For more information visit: https://t.co/A8Hl7uwp7W

Closing date: midnight, Sunday 11th January 2026