New Autism Strategy (Autism Act 2009 Committee Report)

Baroness Rock Excerpts

Wednesday 10th June 2026 Lords Chamber

Moved by

[Baroness Rock]

That 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).

[Baroness Rock (Con)]

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.

--- Later in debate ---

[Baroness Rock (Con)]

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.

Motion agreed.

Queen’s Speech

Baroness Rock Excerpts

Thursday 9th January 2020 Lords Chamber

[Baroness Rock (Con)]

My Lords, this Queen’s Speech is our first and best chance to set out what kind of country we are going to be outside the European Union. It is our chance to remind investors, businesses, workers and trade partners that what is true now of Britain—open, innovative, creative and productive—will continue to be true. It is our chance to capitalise on what opportunities may come from our new-found freedoms.

Austerity was essential to restore investor confidence, but our fiscal position remains vulnerable. That means that if we are going to increase borrowing and add to our debt, it must be in areas that will increase productivity and boost growth. I am encouraged therefore by many of the measures in the gracious Speech.

I am fortunate to have been a member of this House’s Select Committee on Artificial Intelligence and I am currently a board member of the Centre for Data Ethics and Innovation. I say “fortunate” because I feel that I have glimpsed the future of what will drive our economy: AI and data. These opportunities transcend Brexit, this fiscal cycle and even this Government. We need to invest in our future if we are to capitalise and boost productivity, growth and prosperity.

There are many aspects to productivity, but those to which I want to draw attention are R&D, skills and infrastructure. We cannot go too far wrong if we increase our investment in research. I am proud that, in the midst of spending cuts in the past two Parliaments, the Conservative Government protected the science budget. Similarly, we have long had a tax regime that encourages investment in R&D, so I am pleased that the gracious Speech pledges to increase the threshold for R&D tax credits to 13%. This is an important signal. We also need to do more to build on the early work of the industrial strategy, which places AI and data at its heart.

We have all the assets in the UK to realise this opportunity. We have world-class universities, a thriving tech sector and a deep pools of venture capital, so I commend the work of initiatives such as Oxford Sciences Innovation which bring all these actors together to ensure that we convert university research into commercial opportunity. We need to see more like this, and more from the Government’s catapult centres which focus on technology transfer.

As important as research are skills. My main takeaway from my work on AI and data is that we need a stronger pipeline of talent domestically, starting in our schools, and through our migration system so that we attract top talent. We have an acute skills shortage in these emerging professions, especially among women, which is so important to address if we are to avoid gender bias in the way codes and algorithms are written, as the noble Lord, Lord Clement-Jones, eloquently mentioned. The gracious Speech refers to the new £3 billion national skills fund, and the manifesto stresses that some of it will be set aside for “strategic investment in skills”. Perhaps the Minister will clarify that AI, data and other associated technology will be included in this strategic investment, essential as they are for our future productivity and prosperity. This needs to start in schools, but it should also look at retraining and continuous professional development.

The final piece of the productivity jigsaw is infrastructure. The gracious Speech promises a new national infrastructure strategy at the time of the next Budget, so we will have to wait and see what this entails, but I am pleased that what emphasis we have seen so far has been on digital—namely, broadband and digital infrastructure—as well as on the more prosaic targets for new housebuilding and what I am sure will be a strong pipeline of roads, bridges and new renewable energy capacity.

It is high time we addressed our flailing productivity, and if we have to borrow more to do so, then so be it. We have to provide reassurance to the markets of course, but we have also to provide something visionary. A UK that invests in infrastructure, research and human capital is a country that investors will continue to commit to, skilled workers will flock to and entrepreneurs will start companies in. This kind of borrowing might even pay for itself.

NHS: Healthcare Data

Baroness Rock Excerpts

Thursday 6th September 2018 Lords Chamber

[Baroness Rock (Con)]

My Lords, it is a great honour to follow the excellent maiden speech of my noble friend Lord Bethell. I know that all noble Lords will join me in extending him a very warm welcome. As we have heard, he brings a rich family heritage as well as the experience of a veteran campaigner outside of Parliament. I am sure that we will benefit from that dedication, energy and commitment in this Chamber. We look forward to his future contributions.

I am grateful to the noble Lord, Lord Freyberg, for the opportunity to speak in this important debate with esteemed colleagues. Healthcare data may seem dry to some but it is one of the great challenges and opportunities of the technological revolution. Before I move on to some specifics, we should bear in mind the backdrop against which the NHS currently operates—one of significant and sustained financial pressure. It should not be a question, therefore, of whether our healthcare system embraces technology, and opportunities in data within that; it must be a question of how. McKinsey published research on a “large OECD country”, which many have taken to refer to the UK, and a savings opportunity of up to 12% by simply implementing existing digital technologies, of which up to half could be data related. This is an opportunity the NHS cannot afford to miss. Let us keep that in mind when we consider the issue in the round. A financially sound, digitally enabled NHS is to the benefit of all, patients and staff.

That said, we have a way to go before we can consider the NHS well placed to capitalise. Last year, the DeepMind Health Independent Review Panel annual report reminded us that:

“The digital revolution has largely bypassed the NHS, which, in 2017, still retains the dubious honour of being the world’s largest purchaser of fax machines”.


However, I am hopeful that my right honourable friend the Secretary of State for Health, given that he has recently departed the department that is home to all things digital, is well placed to redress this. Indeed, he has already confirmed that technology implementation is one of his priorities. This is an agenda worth pursuing.

I was fortunate enough to sit on the House of Lords Select Committee on Artificial Intelligence. We considered AI’s implications for healthcare. The Academy of Medical Sciences, in giving evidence, said that its impact on the healthcare system,

“is likely to be profound”,

because research and development will become more efficient. New methods of healthcare delivery will become possible, clinical decision-making will be more informed and patients will be more informed in managing their health. So we have administrative gains, particularly if data can be centralised so that different silos can communicate. I commend this Government’s investment in joining up the data to improve the patient experience as they move through the health and social care system, but the gains are broader still—for example, in diagnostics. Microsoft Research showed our Select Committee its InnerEye technology, which will assist oncologists in reading scans. At present, 2 million women are screened for breast cancer every year and these scans are read at a rate of 55 per hour. Technology will reduce this without compromising integrity or commercial outcomes, and at a significant saving to the NHS. This is but one example.

We also saw examples in genomics and personalised medicine, as well as processing data to detect and monitor pandemics. I am encouraged by the digital innovation hubs, which will securely use data to improve the way we are able to prevent, detect and diagnose diseases such as cancer, heart disease and asthma so that patients can benefit from scientific breakthroughs much faster. In short, there are huge clinical and financial benefits if the NHS can capitalise. The question is how we can build trust and bring the public with us. Certainly, the NHS dataset is unique, in size and in longitude, so it presents a unique opportunity, but with that opportunity comes responsibility.

We have all heard of DeepMind’s health engagement with the Royal Free Hospital, the study involving the sharing of 1 million anonymised eye scans under a research agreement that began in 2016. It cost the hospital nothing, which is great, but it might reap huge financial gains for DeepMind and its parent, Google. Many will be uncomfortable with the idea of businesses profiting from exploiting their health data, as has been mentioned, so the right balance must be struck. Benefits in kind is perhaps one way, since it avoids explicit monetisation. However, the AI Committee concluded that what we really need is a departure from local deals being struck piecemeal and a new framework for sharing NHS data, developed and published by the end of 2018. I would be grateful for the Minister’s comments on that. I do, though, commend the forthcoming code of conduct for AI and digital technology, which will provide added reassurance to patients.

The National Information Board summed up the task well in describing its mission as,

“developing the strategic priorities for data and technology in health and care to deliver the maximum benefits for all of us, as citizens and as patients”.

It is that mantra, “to the benefit of all of us”, that we must lead with.