Autism Action

We need to listen to more autistic people, especially those who are often excluded, such as autistic people with learning disabilities, those who use communication devices rather than speaking, people from ethnic minority backgrounds and members of LGBTQ+ communities. Join our Community Advisory Panel to tell us what you think about the issues that matter to you: bit.ly/AutismActionCAP  #autistic #askingautistics #autismaction #autism 

The House of Lords Autism Act 2009 Committee has just launched its public call for evidence. This is an incredible opportunity to have your say about how the Autism Act has - or hasn't - improved life for autistic people. Please consider responding if you're autistic (with or without a diagnosis), have an autistic person in your family, support or work with an autistic person or people, or if you conduct research on how to support autistic people. The committee is also asking autism organisations to submit evidence summarising the views of our networks. We'll let you know how to be part of our submission very soon. To make sure you hear about that, sign up via bit.ly/AutismActionCAP

We were honoured to be invited to speak to the Autism Act 2009 Committee today at the House of Lords. Our CEO Tom Purser spoke alongside Dr Sarah Cassidy, Professor Ailsa Russell, Dr Mary Doherty, Professor Jeremy Parr and Professor André Strydom. We were asked to talk about the impact (or not) of the Autism Act 2009 on issues such as: ➡️ how well mental health services meet autistic people’s needs ➡️ how accessible healthcare settings are for autistic people ➡️ how healthcare services should learn from autistic people’s experiences. To catch up on what was said, watch via Parliament TV: https://lnkd.in/eEcSuBCz The committee has already held several evidence sessions and heard from a variety of witnesses including autistic people, charity representatives and clinicians. It's vital that any future policy learns from the limitations of the Autism Act and drives real, measurable improvements to services. We'll continue to support this work and engage as many autistic people as we can in our wider submission to the committee once the public call for evidence has gone live. Sign up to hear more via bit.ly/AutismActionCAP Photo shows Professor Ailsa Russell, Dr Sarah Cassidy and Tom Purser on their way into the House of Lords.

Earlier this month, our Programmes Director Tracey Parsons attended a round table event reviewing the questions used nationally to learn about disability. This review is vital because the current wording doesn't work well for autistic people, leading to serious limitations in national autism data across all areas of life. The event was hosted by the Office for National Statistics, who are reviewing what are called 'harmonised standards'. Get the full story at https://lnkd.in/ez4hMdpR Carousel image descriptions: Autism Action logo is at the bottom of each one. Icons are on lilac background. 1. Caption: "National data about autistic people is woefully lacking, but why?" Image of a man in orange sunglasses and dark coat in a street, looking at the camera. Graph icon. 2. Caption: "We realised that wording in many standardised survey questions is inadvertently excluding autistic people" Image of a woman in front of a window, holding something she made. Checklist icon. 3. Caption: "We traced the issue to 'harmonised standards' issued by the Office for National Statistics (ONS)" Image of a boy in a red top and green ear defenders face to face with a cat and smiling. Lightbulb icon. 4. Caption: "Now we're working with the ONS on their review of those harmonised standards to help make questions more inclusive for autistic people. This work will lead to greatly improved national autism data in future" Image of a woman in beany hat, glasses and gloves pruning a branch. Image of a girl with plaited hair and a coat sitting in a car. Both are smiling at the camera. Thumbs up icon. 5. Caption: "To hear about your chance to be part of this work, join our Community Advisory Panel. Visit bit.ly/AutismActionCAP" Image of a man in orange sunglasses and coat, sitting and looking directly at the camera with his chin on his hands.

Very pleased to have been invited to give evidence to the Autism Action 2009 Committee on behalf of Autism Action and all our supporters. Despite being the UK’s first disability-specific piece of legislation, and an important step forward in the recognition of the need for the state (in England) to do more to support autistic people, the way the Autism Act operates is perhaps a little confounding. The legislation really only commits the Government to three things: 1. To produce a strategy 2. To produce what is called ‘statutory guidance’ to give legal effect to elements of the strategy 3. To keep both ‘under review’ This has led to three Government strategies since 2010 and two pieces of statutory guidance. The relationship between the strategy and the statutory guidance is an important crux of how the Autism Act is translated into impact. We’re all used to laws that confer individual rights or constrain specific acts but statutory guidance is a little different. It guides public bodies to act in certain ways under certain circumstances, often for specified groups of people. Despite some of the language used in it (lots of ‘shoulds’) public bodies have to follow it unless there is a good reason not to, and not having enough money is not by itself a good reason. However, for the most part doesn’t give individuals personal legal rights or protect them from certain treatment – it instead focusses on shaping how public services are delivered. So where does that leave autistic people? Let’s take an example from the 2015 statutory guidance: NHS Bodies and NHS Foundation Trusts should…ensure that health and care staff who are highly likely to support people with autism, such as GPs, psychiatrists, counsellors and psychiatric nurses are appropriately trained beyond general basic awareness about autism. I don’t think you could meet any autistic person or a supporting family member who didn’t agree this would be a good idea, and yet for the most part this is not the experience that people receive, despite this legal duty being almost ten years old. And so, any examination of the Autism Act (and strategies and statutory guidance) must ask itself a very simply question – why is this? In my view, those of us giving evidence, and anyone contributing to the forthcoming public evidence gathering, should focus their attentions not on providing long lists of wants and wishes for what should be Government policy. For the most part, people will find that these wants and wishes are already reflected in a strategy or the statutory guidance in one form or another. So true scrutiny, 15 years on from the hopeful and optimistic passing of the Autism Act, must instead engage with the question of why good Government policy has not translated into the radical yet necessary change that autistic people need to improve their lives. This is certainly where I’ll be aiming to focus my modest contributions to the process next Monday.

CW: suicide Our sincere thanks to everyone who joined our Parliamentary event on 25th February to raise awareness of the hidden autism suicide crisis in the UK. Particular thanks go to Peter Swallow MP for hosting and to Baroness Browning, Lisa Wolff, Dr Rachel Moseley and Professor Sir Simon Baron-Cohen for presenting alongside our CEO Tom Purser. Policy Connect did a great job of organising the event with us. Over one hundred attendees heard initial findings from our autism and suicide prevention research – the largest ever UK survey of autistic people’s experiences of suicidality – and we’ve been blown away by positive feedback following the event. So, one month on, what have we been up to? We have: - Continued work to translate our research findings into real-world services and support for autistic people – more on that coming soon. - Held follow-up meetings with policymakers across both the House of Commons and House of Lords, as we work to influence positive policy change. - Been invited to give evidence to the House of Lords Autism Act Committee next Monday, which you can watch via Parliament TV. - Continued to engage with the Office for National Statistics about improving data collection on autism more broadly, in the expectation that this will improve data about suicide by autistic people, as well as many other issues. - Provided evidence to the Lampard Inquiry as part of our ongoing work to ensure that autistic people who died in Essex, including by suicide, are adequately considered within the Inquiry’s investigations. We hear daily from people and organisations who share our conviction that the hidden autistic suicide crisis in this country must be understood and stopped. Our hearts go out to everyone affected by this issue and we won’t rest until autistic people have better mental health and crisis support and access to services that actually meet their needs. If you want to stay up to date about this work, please sign up for our newsletter via bit.ly/AutismActionNews If you're struggling, please reach out for help. We have support ideas on our website, at https://lnkd.in/eDf8wvxx

If, like me, you think autism services need a serious shake up, please get involved in the work of the Autism Act Committee. This is a rare and precious opportunity to drive improvements to autism policy change. We're grateful for the chance to provide evidence on March 31st. You can watch those sessions live or later via Parliament TV to find out what the committee has heard so far. Have the key issues been raised? Have they been completely overlooked? If you think something's been missed, don't worry. There'll soon be an opportunity for members of the public to contribute directly. One option will be to work with us, as we gather and amplify as many views as we can. If you want to be part of that, visit bit.ly/AutismActionCAP and sign up to our community panel. #autismact #askingautistics #autism #autismstrategy

We recognise that this week's Green Paper included proposals that might help autistic people, but that plans may not go far enough, and proposed changes to Personal Independence Payment (PIP) will leave many concerned about losing vital support. Read more from our employment lead, Richmal (Richie) M., and find out how you can get involved in our response to the Government's consultation via the link below. #employment #autismemployment #employmentgap #pip #autismpip #greenpaper

We include autistic people and those who support them in everything we do. Join our Community Advisory Panel to tell us what you think about the issues that matter to autistic people. https://lnkd.in/ge7y2GDb #autistic #askingautistics #autismaction #autism 

BREAKING: Autism flagged as key theme in Lampard Inquiry evidence requests CW: sensitive content, mental health, death We welcome news that the Lampard Inquiry is now asking witnesses about autism and considering the adequacy of adjustments made to the care received by autistic people. Read more via our website: https://lnkd.in/e9pcvRd7 We applaud the efforts of all those who have campaigned for this Inquiry and advocated for the loved ones they lost. Today, we recognise the efforts of Julia Caro (pictured right with her son Chris) and Lisa Wolff (pictured left with daughter Abbi). Both Chris and Abbi died within the remit of the Inquiry and are much missed. Julia has long campaigned for this Inquiry, and Lisa recently raised awareness among policymakers by speaking at our Parliamentary event in February 2025. We will continue to work with them and others to ensure the Inquiry leads to positive change for autistic people accessing mental health services. #autism #autistic #lampardinquiry #mentalhealth