(3 days, 21 hours ago)
Lords ChamberThat this House takes note of the Report from the Autism Act 2009 Committee Time to deliver: The Autism Act 2009 and the new autism strategy (HL Paper 205, Session 2024–26).
My Lords, I am delighted to introduce this important and timely debate. I thank the members of the committee for their hard work, dedication and thoughtfulness. I thank our specialist adviser, Professor Laura Crane, professor of autism studies at the School of Education at the University of Birmingham, for her expert guidance. I also thank our outstanding staff team—Stuart Stoner, Lucy Valsamidis, Abdullah Ahmad, Clayton Gurney and Aneela Mahmood —for their incredible support.
Most of all, I thank everyone who engaged with our inquiry. We were constantly struck by the moving and powerful testimonies. Without all those who engaged, our report would just not have been possible.
The Autism Act 2009 is a landmark law for and about autistic people. The Act began as a Private Member’s Bill but won government support thanks to the tireless efforts of its sponsor, the late right honourable Cheryl Gillan MP, and we pay enormous tribute to her today. The Act requires the Government to produce an autism strategy for England, backed up by statutory guidance. Our committee’s task was to examine how well the Act has been implemented and to inform the development of a new autism strategy ahead of the expiry of the current strategy, which is this July—next month. A key priority for us was to carry out our inquiry in partnership with autistic people and those who support them.
We took oral evidence from, incredibly, nearly 70 witnesses and received written evidence from almost 400 individuals and organisations. Several thousand people also contributed through surveys and consultation exercises. I think that speaks volumes for the engagement and importance of the topic. We also spoke in private to dozens of autistic people and those who support them, including invaluable visits to CareTrade’s employment scheme at St Thomas’ Hospital, just over the river, and Phoenix School in Tower Hamlets.
When the Autism Act was passed, autistic people were often invisible. The Act really helped change that, making government recognise and respond to their needs. When the Act was passed, about one in 100 people were estimated to be autistic—diagnosis rates are now higher than that among younger people but still far lower among older people. That rise is in part because of our understanding of autism, and it has evolved. But there are also worrying signs that more autistic people are struggling. The inequalities are unacceptable and, in many cases, widening. More than 270,000 people are now waiting for an autism assessment, only about three in 10 autistic people are in work and, on average, autistic people live shorter lives.
The Government’s autism strategy for 2021-26 set out laudable ambitions decided in consultation with autistic people and their families but, after the first year, successive Governments produced no plan to deliver or fund the strategy. It is now time to change that. Our central recommendation is that the Government must deliver a new autism strategy, taking effect when the current strategy expires next month. The Minister for Care, Stephen Kinnock MP, assured us that the Government are
“absolutely committed … to there being a strategy … and to there being an implementation plan”.
He said
“the strategy that we will bring forward is being shaped as we speak”,
and the Government will be
“developing the strategy in 2026”
and
“the input from this Committee will help us shape that strategy”.
But—and I am sad that I have to say “but”—the Government’s response to our report was markedly vaguer, saying:
“We recognise that meaningful engagement will take time, so a balance will need to be struck as to what level of further engagement is required, and the current strategy will remain in force while we do this”.
This is simply just not good enough. The strategy’s expiry date is now weeks away and we seem no closer to delivering for autistic people. Can the Minister tell the House what will happen when the current strategy expires? When will the new strategy come into effect? How are the Government ensuring that the new strategy reflects the findings of our report? How will the Government meaningfully involve autistic people and those who support them in the development of the new strategy? Most importantly, how will they ensure accountability for delivering the change autistic people need?
Our report examined progress against the ambitions in the 2021 autism strategy, and I will address these in turn. First, we considered how to improve public understanding. Awareness of autism has rapidly grown in recent years, but public understanding has not kept pace. The 2021 autism strategy promised a
“public understanding and acceptance initiative”,
but that never materialised. Sadly, many told us that stigma has since increased. We called on the Government to run a public understanding campaign and to commission and evaluate mandatory training for public-facing staff. The Government told us they would “consider” this recommendation. Further inaction is inexcusable, so will the Minister clarify what concrete action the Government will now take to deliver a public understanding campaign and ensure effective training for public-facing staff?
Secondly, we examined systems for identification, assessment and support. Time and again, we heard from our witnesses the powerful evidence of how autism diagnosis changes lives. However, the autism assessment system can also be a bottleneck, giving overstretched services a means to ration access to support. The assessment system is now unfit for purpose. Thousands wait years for a diagnosis and receive little to no support, even when it comes. We called for the Government to move towards a stepped, lifelong model of support, but many fear that moving away from a diagnosis-led model will become an excuse to withhold what little support now exists. The Government’s independent review into mental health, ADHD and autism could offer a real opportunity for a new approach. I would welcome the Minister explaining how the Government will reform and rebuild our broken systems for autism identification, assessment and support, in partnership with autistic people and those who support them.
Thirdly, we considered how to reduce health inequalities and the life expectancy gap. We were truly honoured to take evidence from Paula McGowan OBE, who campaigned successfully for the introduction of the Oliver McGowan mandatory training for health and care staff after her son’s tragic death. We pay tribute to Paula and to Oliver’s memory. We must build on this progress, so will the Minister now commit to setting out a plan to enable autistic people to live healthier, longer lives? Many autistic people still fall into the cracks between mental health and social care services, and too often this leads to crisis. We heard truly courageous testimony from many young autistic people who had been detained for years in mental health hospitals. We called for a national framework for low-level support to prevent care needs developing, and a plan to build strong community services, including appropriate housing, for people at risk of in-patient admission. The Government’s response promised only an annual statement on implementation of the Mental Health Act, and in the longer term a national care service, but neither of those is a plan. Will the Minister tell us how the Government will stop unnecessary detention in mental health units once and for all?
Next, we examined how to secure equal access to education and employment. We are setting up a new generation of young autistic people to struggle. Thousands are unhappy at school or are out of school altogether. The right honourable Alan Milburn’s recent review starkly showed how we are failing the million young people who are not in employment, education or training. A disproportionate number of them are autistic. We recommended that the Government build up capability for educating autistic children and young people in all settings, supporting the best special schools to become centres of excellence. The Government’s planned reforms to the SEND system offer a real opportunity to make schools more inclusive, but we also know how worried many are about changes to their rights to specialist support. It is vital that reforms are taken forward in partnership with young autistic people and their families. Young autistic people consistently told us how they face what they describe as a cliff edge in access to support when they become adults and enter the world of work. We called on the Government to develop integrated services to help them through this critical transition. Can the Minister tell us how the Government will ensure that every young autistic person has the support they need to give them the very best start in adult life, including implementing the recommendations of the Keep Britain Working review?
Finally, we looked at improving support in the criminal justice system. Like anyone else, autistic people can come into contact with the criminal justice system as victims, witnesses or offenders. But autistic people’s needs are often unmet, leaving them at risk of disproportionate disadvantage. I welcome efforts to deliver the cross-government neurodiversity action plan for adults in the criminal justice system, but the reality is that support remains patchy. Will the Minister tell us how the Government will ensure that the criminal justice system treats every autistic person fairly?
The 2021 government autism strategy set a goal that every autistic person should have the support they need to live a full and happy life. Together we can make that a reality, but to do that we need a new strategy, a credible plan to deliver it and clear accountability for change. It is time to deliver the change that autistic people in this country need to see. I beg to move.
My Lords, I thank all participants in today’s debate. Passion, care, empathy and understanding have really shone through, and I am grateful to Members of this House. It is incredibly important that we support our autistic community.
I know that many people have thanked them, but I think it is worth paying tribute to my noble friend Lady Browning and the noble Lord, Lord Touhig, for bringing the committee to life. We would not all be here without the two of them. I pay tribute to all the hard work that goes on behind the scenes in the committee as well.
I want to thank one person above all else: my son, who is 25 and autistic. He has taught me so much about the extraordinary way in which autistic people can contribute to our wider community, as was recognised by many Members today.
We have a unified voice here today. We heard a lot about what we need to do and what needs to be delivered. We need a new strategy and I am grateful to the Minister for reassuring us that there will be one, but we did not hear from her about an implementation plan or accountability: that was another unified message that came through loud and clear from Members today. But we are weeks away. It is reassuring that the strategy will continue, but we really need a sense of urgency from the Government.
It is disappointing—I know the Minister has used the word “disappointing” a number of times in her response—about the timing. Perhaps the Government need to read our report again, because we have done all the heavy lifting and the hard work. This can be delivered and we do not need to wait for other things to go on; in my opinion, they should not be holding up a new strategy. I thank the Minister kindly for her enthusiasm in making sure that we get this right, because we really need to do so, but it is not a surprise that we are meant to be having a new strategy in July: we have known about this for a long time.
I sum up by saying: we need a new strategy, an implementation plan and accountability, and it is up to the Government now to deliver.