Autism Act 2009 Committee
Corrected oral evidence
Monday 10 March 2025
2.45 pm
Watch the meeting
Members present: Baroness Rock (The Chair); Baroness Browning; Lord Crisp; Lord Elliott of Mickle Fell; Baroness Goudie; Lord Hope of Craighead; Baroness Pitkeathley; Baroness Ritchie of Downpatrick; Lord Wigley.
Evidence Session No. 1 Heard in Public Questions 1 - 6
Witnesses
I: Adam Micklethwaite, Director, Autism Alliance; Fazilet Hadi, Director of Policy, Disability Rights UK; Tim Nicholls, Assistant Director of Policy, Research and Strategy, National Autistic Society.
Adam Micklethwaite, Fazilet Hadi and Tim Nicholls
Q1 The Chair: Good afternoon and welcome to the first public meeting of the House of Lords committee on the Autism Act 2009. We will begin our evidence session in a few moments, but I will first make a brief introductory statement.
The committee has been appointed to examine how well the Autism Act and the Government’s autism strategy are working and to make recommendations about what the Government should do next. A key priority will be hearing directly from autistic people and others with lived experience, and we have been engaging with key stakeholders, including those giving evidence today, about that. We will continue hearing oral evidence on Monday afternoons most weeks when Parliament is sitting, until the summer. We will also publish a call for evidence, which is open to anyone to respond to before the Easter Recess in April.
The committee’s job is to scrutinise the Government and their policies. We are not able to help with individual problems or complaints. We do not permit personal criticism of individuals, as they do not have the right to reply. Members of the public can watch our proceedings online or in person but are not allowed to speak during a public session. Our evidence sessions are on the record, which means that they are broadcast and a written transcript is taken for subsequent publication. The list of members’ declared interests has been published on the committee’s website, and members will declare their interests the first time they speak. As chair, I have no relevant interests to declare.
Having made that introduction, I would now like to introduce our first panel of witnesses. We are absolutely delighted to be joined by Adam Micklethwaite, director of Autism Alliance; Fazilet Hadi, head of policy at Disability Rights UK—who are both very kindly joining us in person; and Tim Nicholls, assistant director of policy research and strategy at the National Autistic Society, who is joining us remotely. Thank you for joining us. You are all extremely welcome.
I will now ask the first question and I would be very grateful if you could give a brief introduction before you answer. What was the purpose of the Autism Act 2009, what is the importance of the Act today and how does it relate to other key legislation affecting autistic people?
Tim Nicholls: I have been working on the Autism Act for many years now. At the National Autistic Society, we led a lot of the campaigning around getting the Autism Act through Parliament in the first place, and, before the Act came to Parliament, we launched a campaign called “I Exist”. This was based on the fact that autistic adults too often were not getting the support that they needed, and they were often falling down what was often known as the gap between traditional services: people were not eligible for learning disability services or mental health services, but there were no services available that would meet their needs as autistic adults. The reason it was called “I Exist”—which does show how far some of our public understanding has come on autism—is because people, quite simply, did not know that autistic adults existed. It was still very often seen as a young person’s condition that people grew out of, therefore autistic adults were often utterly invisible in the system.
Today, the Act remains as vital as it has ever been. We know that the gap in services still exists, but we have also been able to deepen our insight into the many inequalities that autistic adults and children face across, really, all areas of their life, whether health, mental health, social care, education, employment or criminal justice: we see them all and they still pervade.
One of the reasons why I think this has often been difficult is that the Autism Act, while it is a piece of legislation that mandates a strategy in statutory guidance, is also dependent on the performance of a number of other statutory obligations such as the Care Act, the Equality Act and the Health and Care Act. We know that implementation of those other Acts is also a problem. That means that autistic people will often end up at the sharp end of those things. However, the key purpose and the key strength of the Autism Act is that it is the only place that ties all those regimes together for the benefit, and the purpose of improving the lives, of autistic people. I will stop there and allow my other colleagues to come in.
Adam Micklethwaite: I am director of the Autism Alliance, which is a national partnership of not-for-profit organisations that support autistic people and their families. I also have indirect lived experience of autism in my family.
One thing I would say about the Autism Act is that it was a social inequality law. It recognised that outcomes experienced persistently by a specific group in society were unacceptably poor and were avoidable. The first strategy notably talked about the moral imperative to act, and I think that it is important to go back to that underpinning of the Autism Act.
The other thing I would say is that the Act, by virtue of having one clear provision—to create a strategy and then statutory guidance alongside it—was also a way of changing the system. It was a challenge to the way that the system was operating to make it operate in a different way to meet autistic people’s needs.
But the subsequent implementation did not take account of how much strain the system was starting to be under at that point. Then, through the next 10 years, that strain has obviously grown and grown: we have seen huge budget reductions across the board, to begin with. That meant that the strategy that came from the Act did not address what I will call in this session the deep barriers in the system, and it did not plan for high enough pressure on assessment and diagnosis services for autistic people, which are clearly critical—almost the spine of the whole system, if you like.
As a result, although it remains excellent to have the Autism Act in place, outcomes for autistic people have not improved since then in the way that was originally intended in policy. If you look at outcomes now across education, health, employment and justice, and at the same or broadly the same measures 15 years ago, you see very little difference. On some measures, we have gone slightly backwards; I am thinking particularly about the number of autistic adults in mental health hospitals who do not have a learning disability. There has been some progress in the middle tier of the system, if you like, with more specialist autism teams and greater coverage of diagnostic services. We have seen a great piece of work by the NHS on a framework for autism assessment, but individual autistic people and their families are still fighting a system, 16 years after the Autism Act, that frequently fails to recognise them and, even if it does, fails to provide the right support and adaptations.
There are undoubtedly strong individual champions of this agenda throughout local government and in the health service, and we salute the work that they do. They are trying their very best, but they are doing it in a system which is still set up with those deep barriers that are not allowing progress to be made. The statutory guidance that came out of the Autism Act has obviously helped with those changes in the middle of the system and to put on the right kind of pressure, but those deep barriers, which I am happy to say more about later in the hearing, have remained.
I will say one final thing about the Autism Act. I think there is a very clear argument today for retaining and maintaining the Autism Act and the strategy. First, the sheer extent of the inequality that autistic people face stands out even among marginalised groups. Secondly, as Tim said quite rightly, there is action needed across the whole life course and, while you have the Care Act, the Equality Act and the Children and Families Act, they are not operating in quite the same way with the focus on the whole life course, particularly on those transition points, which is where things often break down for autistic people. Thirdly, some barriers in the system are specific to autistic people, particularly the stigma that they face and the access, or rather lack of access, to diagnosis services. Fourthly, economic benefits are realisable by prioritising autism, thinking particularly about employment. Finally, the Government are more likely to address the wider barriers that hold back all groups across society, as those barriers are felt more strongly by autistic people in the system, if they prioritise autism, which is exactly what the Autism Act allows them to do. I would say that there are still very clear arguments for having an Autism Act and a strategy.
Fazilet Hadi: I am head of policy at Disability Rights UK. We are a pan-disability organisation led by disabled people. Our trustees and the majority of our staff are disabled people. We believe very strongly in “nothing about us without us”—disabled people being at the table at the decision-making level and disabled individuals being listened to and supported in the ways they think best. We also believe in something called the social model of disability: this does not negate understanding people’s medical conditions but says that society needs to dismantle some of the barriers preventing disabled people from flourishing in an inclusive world.
I am not an expert in the Act, and Tim and Adam have clearly set out how it made autistic people visible in a society that had neglected that impairment group. Maybe I can add to the conversation a sense of what was happening in the 1980s, 1990s and the early 2000s, when the disabled people’s movement was fighting for equality across disability.
If you cast your minds back, we saw numerous attempts to create a disability discrimination Act through the 1980s, and it was not actually passed until 1995. There was no equality protection for any disabled person in this country until 1995, which is 30 years ago this year. In the 1990s, we also saw things that would have benefited many disabled people, and hopefully also autistic people, such as the introduction of the extra cost-benefit disability living allowance, the Access to Work scheme giving support to disabled people in the workplace and the advent of direct payments supporting disabled people who wanted social care but also more control over the support that they received at home.
Then, in the 2000s—in fact, in 2009—we saw the United Nations Convention on the Rights of Persons with Disabilities, which the UK Government ratified but which has not been incorporated into UK law. Again, if it were incorporated into UK law, that would benefit autistic people alongside other disabled people. Then, in 2010, we of course saw the Equality Act, which kind of overtook the Disability Discrimination Act. In that period, we saw the growth of legislation around disability—Tim mentioned the Care Act 2014. I think one of the issues with any legislation is that it needs funding and implementation. Perhaps we can return to that later.
Q2 Baroness Ritchie of Downpatrick: You are all very welcome. First, I have no interests to declare. I have a two-part question. Since the Act was passed, what have been the key changes for autistic people and disabled people generally and why? What role have the Act, successive autism strategies, and the statutory guidance played in this?
Fazilet Hadi: Since 2009, many disabled people would have felt that things had got a lot worse for them. Starting with disability in general, I think disabled people have seen their real-terms incomes and benefits reduce because of austerity. Certainly from 2010 onwards, I think most disabled people who find themselves on benefits because they cannot work or because the workforce does not enable them to work—it is not flexible enough and does not make the adjustments—will have found it a real struggle to make ends meet through austerity.
We also saw vital public services—education, health and social care—really struggling to maintain support while numbers rose and services were put under pressure and reduced. That is particularly true of local authorities and, indeed, health, as we saw when we entered the Covid crisis. Again, we saw disabled people being put at a real disadvantage, with the Coronavirus Act restricting our right to social care and, in the end, reducing our rights to special educational needs through the education, health and care planning system. Then, of course, disabled people have been hit by the cost of living crisis: we have seen incomes fall, energy costs rise, rents rise, food costs rise, and 70% of food bank users being disabled people. It has been a perfect storm of services diminishing, incomes falling and costs rising.
With things such as the Autism Act, from what I have read—the experts will say more—we have seen some strides with specific NHS and education initiatives, but almost with a backdrop of the state fighting the state and it being very un-joined up. On the one hand, it is great to see the advances that have been made, but it is almost like things are given with one hand and taken away with the other.
Adam Micklethwaite: As I said in my previous answer, the Autism Act and the statutory guidance in particular, which I think was last issued in 2015, has led to some progress, but this has been in the middle of the system. It has not been so much about the outcomes for autistic people or some of the aspects of the system that can enable better outcomes. We have seen an increase in specialist autism teams—I know you have an expert witness coming next who will be able to say more about the evaluation of that, but there is some very positive evaluation of its impact.
We have seen greater coverage of diagnostic services, which was one of the core priorities of the first strategy, and that has more lately been supplemented by some good guidance from NHS England on what makes for good assessment services. We have seen some positive work in justice, where a whole range of different things have happened, and other important steps forward in the NHS: there have been some improvements in the data collected, we have seen the Learning from Lives and Deaths report and we have seen processes such as the Dynamic Support Register.
A range of things have happened that have directly or indirectly been a result of the statutory guidance that came out of the Autism Act but, as I said in my previous answer, because the strategy did not in itself address the deep barriers in the system—stigma, access to diagnosis, accountability and funding—we have not seen the improvements in autistic people’s outcomes that we would have wanted to see through the original policy intent. To give some examples, there is a continuing gap in educational attainment for autistic children and young people; autistic children are twice as likely to be excluded from school—mostly unlawfully, I should say; and the employment rate for autistic adults is one of the lowest of all groups, at 29%. As I said, we have almost gone backwards in some areas, in the sense that, despite promises made all the way back in 2010 to improve the provision of care and support in communities for autistic adults, we have now seen an increase of 137%, between 2015 and the present, in the number of autistic adults without a learning disability who are confined in mental health hospitals. That has gone the opposite way to the way you would have hoped.
The Autism Alliance carried out some work in 2023 that suggested that a minimum of around 11,000 autistic adults with a mild or moderate learning disability, who have a need for care and support, are not receiving anything at all. The total number of autistic adults not in receipt of care and support who have that need is probably a lot higher than that. We also found in the same piece of work the frankly unacceptable statistic that 77% of autistic adults—over three-quarters—said that they reached crisis point before any support was provided.
I know that, in a second, Tim will probably talk about the great work that the National Autistic Society did in 2019 to look at the Autism Act 10 years on. It showed a similar picture of unmet need out there, which has persisted. We have also seen some appalling cases of abuse of autistic people and people with learning disabilities, some of them very recent, and they go all the way back to 2010 and the Winterbourne View scandal. Despite there being some positive change coming out of the strategy, the statutory guidance and the Autism Act, the overall picture is one where outcomes have not changed in the way we would want. That merits a reconsideration of the way the strategy is set up, what it is trying to achieve and how it works, which I am sure we will talk about shortly.
Tim Nicholls: I agree with the things that Fazilet and Adam have raised, so I will do my best not to go over the same territory. Fundamentally, when we look at what has changed for autistic people since the passing of the Autism Act, it is some things but not enough. You will probably hear that as a refrain from all of us today.
I will focus on some of the structural aspects of what the Autism Act, the strategy and the statutory guidance first implemented and then continued to implement, as it is worth reflecting on them. As I said back in 2007, we launched “I Exist” because, within the system, autistic adults were essentially not known to exist. The Act, the strategy and the first statutory guidance mandated that every area has to have a pathway to diagnosis for autistic adults. That is really important. While we know that waiting lists for autism diagnosis for adults and children are going through the roof, with 200,000 people now waiting, it is worth reflecting that, when we first asked local areas in that campaign back in 2007, only half even had a way for adults to get a diagnosis in the area and that there are established teams in every area now. That is undeniably a good thing, but it is very much a picture of partial progress when we look at the lack of resource behind those diagnosis teams in local areas. Similarly, there is now a senior responsible commissioner for autism in every local authority, which there was not before. That is really important when you are designing services locally.
However, it is also worth reflecting on some of the structures set up under the Act and the first couple of strategies, such as having partnership boards at a local authority level. These were really useful tools if they were done right to bring autistic people, carers and families around the table with council officers and people from other local agencies—such as the jobcentre or police in local areas—to say, “What should we do in our area to improve things for autistic people?” That led to the development of local autism strategies, which were a key way of making change happen and of involving autistic people in that development.
Fazilet mentioned the coronavirus pandemic. She is absolutely right on all the ways that, legislatively, autistic people’s rights were temporarily eroded, and they were not necessarily properly considered within that. We also saw some of the things that drove forward local progress, such as partnership boards, fall by the wayside. They did not meet anymore, and it took a long time for any to start meeting online. Some still have not re-established—and they are a statutory requirement in the statutory guidance. From looking at some of the things that have changed but not for the better, there is a lot that needs to happen in that structural picture.
I will point to one other way that I think that the Act has led to progress at a micro, individual level. We know that, up and down the country, there are people who write letters or make complaints who cite the Autism Act. They may even have to issue a letter before a claim; that happens quite a lot. The reason that we have not seen a real test case in the courts is because, when that letter before the claim goes, it is so clear that that autistic person has a right to access a diagnosis service or a care assessment that the local authority or the statutory agency involved backs down. That is an incredibly powerful tool in the hands of autistic people. It is probably not well enough known about; it is also quite difficult to do yourself, and you may need support in doing it; and, frankly, the system should not be relying on people challenging a bad decision when it is made but trying to make it work from the outset. But this has still changed for autistic people.
On some of the other really good things, it is worth noting that, when the Autism Act first went through and the first strategy came out, it did not come with implementation money. In 2014, when the “Think Autism” strategy came out, it came with around £4 million of implementation money, but it is important that three-quarters of that was capital and therefore could not really go to the revenue spending that local areas really needed to improve their services.
The first year of the most recent strategy, in 2021, came with £73 million largely within NHS England. That is reflective of the prominence of autism within NHS thinking now. There has been a recognition that these things will need proper money to happen. You cannot just wish it away, you cannot put a bunch of outcomes in a document and hope it is going to happen and you cannot let it trickle down: it needs funding. I am sure we will come to some of the reasons why that original £73 million has not been developed on since then, but I think one of the key things to take away is the prominence with which autistic people now feature within the thinking of Government and the public psyche. I will leave it there.
The Chair: It is worth moving on. We have quite a few more questions to ask, so could I encourage our witnesses to be a little briefer? This is so fascinating, and I want to make sure we have time to do it all.
Q3 Baroness Goudie: I have no interests to declare. In what ways are there still barriers to autistic people getting the support they need and why? How far are those barriers specific to autistic people?
Tim Nicholls: We have all mentioned how pervasive the inequalities are that autistic people face. We know that over 200,000 people are on the diagnosis waiting list and that over 80% of them are waiting beyond NICE’s recommended three months for their first appointment. We know that people wait years and years for those diagnoses. Every moment that you do not have a diagnosis not only can inhibit getting the right support but is key to understanding yourself, your needs and your strengths. We have people living in limbo, often developing mental health problems off the back of that.
This brings me on to the second major health inequality, which is mental health. We have seen over the last decade and a half, since the scandal and abuse that was uncovered at Winterbourne View, that there is a cohort of autistic people who, because of the gaps that still exist in our services, end up in in-patient detention, quite often utterly inappropriately, and are often there for an average of five years. We know that, while people are in, they are less likely to recover. They may get further away from discharge because of overmedication and responses to their behaviour that are not tailored to their autism.
On people with learning disabilities and autistic people who are subject to detention, we have had a decade and a half of government plans to try to bring that number down, but the number of autistic people has gone up by over a third. That leads us at the National Autistic Society to be very clear that this is a human rights issue around Article 5 and people being deprived of their liberty without legal reason.
On access to care and support, autistic people were previously turned away from care assessments all too often, because they were often told, frankly, “You don’t have a learning disability, so you will not qualify”. I wish I could sit here today and say that that had changed, but we hear from autistic people and from our workers—Adam said that, in 2019, when there was the last review of the strategy, over 70% of people told us this—that autistic people do not get the care and support that they need. From talking to autistic people, we know that, if you just go to a local authority and say, “I’m autistic and I need an assessment of my care and support needs”, you will often be turned away because there will not be anything that meets your needs. That is completely against the ethos of a needs-led care system, so it has to change.
In education, we know that there is an attainment gap, an attendance gap and an exclusions gap. We know that people are waiting for too long for EHC plans, and autistic people are on the wrong side of all those gaps. Fundamentally, with the SEND reform going through Parliament—we expect it in the next year or two—this will be a key barrier.
Finally, autistic people often find themselves on cliff edges switching between systems. The biggest one of those is leaving school and going off to work or to college or university. It is described as a cliff edge because, every single time a parent or young person has talked to me about it, they have talked about falling off a cliff. The support disappears. Processes are in place; they are then contextualised within the statutory guidance, which is clearly what is supposed to happen, but we know that the implementation simply is not happening.
Those are all important barriers. They also all touch on the wider ecosystem of legislation, which is really important but, in the interests of keeping things brief, I will stop there.
Adam Micklethwaite: There are four deep barriers in the system for autistic people, which are still there now and have been there since the Autism Act, and which the strategies have been unable to address. The first is stigma and a lack of understanding. The proportion of autistic people who say that society either never or only sometimes accepts them is 91% in recent research, which is frankly a horrifying figure. Some 79%of autistic people will experience poor mental health in their lifetime. These things are almost certainly connected, and that is one of the highest of all groups in society.
It is still not safe to be out as autistic in many workplaces and schools. A significant proportion of the population still believe that autism is a learning disability, that autism can be cured or that autistic people cannot have empathy. So these are serious, deep issues in society that are still very much there. We have seen some progress, but it has not gone away.
The second deep barrier is around assessment and diagnosis, which Tim already covered—that there are more than 200,000 people who are still waiting. Of course, assessments should be the basis of a system response, whether or not there is a diagnosis. The system should be about assessing needs and making sure that those needs are met. That should be locked in from the start, and you should not have to fight for that process to happen.
The third is accountability. The consequences for not meeting autistic people’s needs, again despite the Autism Act, are frankly not clear. It is not quite clear what happens when those needs are not met, whether anybody has to move on as a result or somebody is called to account. Nothing much seems to happen too much of the time. The processes at a local level for people to challenge decisions are complex, time-consuming and frankly exhausting for families and individuals. I know that Tim was positive about the use of the Autism Act in that way, and that is good, but I would not want to overdo that in the sense that there are still huge challenges to people having a sense of accountability.
The fourth one is clearly funding. We need to see more funding across the whole system. That is very well known and it is the macro challenge of this Parliament and probably the one afterwards as well. But just as importantly, the funding that is there—because there is a lot there—is misaligned. There is a lot in the system, but it is often blocked. It might be over there in health when it needs to be over here in social care, for example. The funding is also not informed by updated estimates of autism prevalence, which are a lot higher now than they were when primary research on this was last commissioned back in 2006 and 2007. For all these reasons, funding is still a barrier.
Put all those together and you continue to have something that holds back the delivery of the original policy intent for autistic people and their families, quite considerably.
Fazilet Hadi: I agree with everything that Tim and Adam have said. From looking at it through a disability perspective, and there are 16 million disabled people in the UK, we see that a lot of the things being raised are reflected across disabilities. This is a society permeated by ableism, by which I mean that our lives are often not valued equally. Some of us experienced that during Covid, with lack of access to critical care services or “do not attempt resuscitation” notices being put on our files without our consent. There is a big issue about whether non-disabled people and disabled people are valued equally in this society.
There is a huge issue with poverty with benefit levels being very low. We are on the verge of more cuts to the social security system. I think it was Adam who mentioned the low employment rate of autistic people: people are really struggling to make ends meet and it is very hard to flourish in that situation. There is a lack of public funding for services, and people have touched on education, social care and health; you can have all the high-falutin’ aspirations in the world, but you need to fund them.
Finally, on the Equality Act, Tim mentioned that often the responsibility for calling out the statutory sector—whether because we are not getting the services we need or because the Equality Act has been breached—is left to the disabled person. That is totally unacceptable. Why are the Government not driving through accessibility and removing barriers systemically? Why are they leaving it to individual disabled people to fight for our rights?
Q4 Lord Crisp: I have no relevant interests to declare. This is all extremely helpful in laying out the big picture for us. I have three questions that are linked and you have more or less answered the first one and a bit of the second. Since the Act was passed, how effectively have the Government set policy to improve support for autistic people, including through the current autism strategy? Secondly, how should the Government approach this differently in the future? Thirdly, when making those policy decisions, how should the Government listen to and learn from the autism and disability communities?
Adam Micklethwaite: All the autism strategies that have come since the Autism Act have largely focused on guidance, pilots, sharing best practice and things that, if you like, are closer to the surface of the system rather than to the deep barriers that I referred to in the previous answer. The strategy did not, for example, set a target for year-on-year improvements in autistic people’s outcomes and then hold somebody central accountable for that happening. It did not take account of the impact of budget reductions over the last 10 years or prioritise better data on autistic people’s outcomes in the way that perhaps it should have or with the strength that it should have done.
It did not really engage directly with that social stigma to which I referred. For example, learning about autism or other types of neurodivergence and disability could have been made mandatory in primary schools. That might have helped with the social stigma. It also did not engage directly with autism prevalence and the need for assessment. It was clear way back then that the need was rising exponentially, and the Government had every opportunity to walk towards that and say, “What does that mean? Let’s have a conversation about that and try to understand how we can meet that need in the future”. The strategy said lots of great things, but they were really focused at that higher, surface level, in the system.
On your second question, in future the Government would be well advised to start with the outcomes and experiences of autistic people, and track back from those through the system to understand what is not working at a system level and so get to those deep barriers. The Government should try to understand how addressing barriers for autistic people will help to improve the whole system, as the principles for autistic people are ones we would all subscribe to for the rest of the system, and probably for ourselves as well: meeting needs as the basis for better outcomes, getting support right first time, and preventing the incidence of crisis. The Government should also try to get a grip of understanding prevalence and need, and how this should translate into better commissioning at the front line.
Fundamentally, to get change in outcomes, the Government are going to need to look at how the system needs to change and work out which levers and incentives they have to make that happen. I will give some examples of how that has happened in other forms of policy. The Early Years Foundation Stage in early education is a good example of something which was systemic. The Ofsted inspection framework is a system-level issue, as is a statutory target for the whole system. So there are things that the Government would be well advised to look at.
In listening to autistic people and their families, there is a big difference between saying and doing that well, and often it is said well but the follow-through is not there. I would say that there are two things that it is important to get right, and I am sure my colleagues will have more to add. First, it should involve a wide range of autistic people with different types and levels of need, because autistic people’s experiences are very diverse indeed, and every autistic person is entirely individual in their strengths and needs. Secondly, it should actually go into the experiences that autistic people have of services and society and understand why things work and why things do not in that individual context and, as I say, from there track back to the whole system. Traditional approaches to consultation and surveys will just skate over the surface, or certainly risk smoothing out those really important variances in the way that autistic people experience the world.
Tim Nicholls: Adam set that out really well and I agree with everything that he said. I have already spoken about the different levels of funding that have come through over the subsequent strategies.
In some instances, we have seen a greater proportion of resource being allocated, and that is a good thing. However, with the latest strategy you saw an accurate diagnosis of the system and the inequalities that exist in it. You would be hard pressed to find anyone who disagreed with any of the objectives of the last strategy, and they were based on the evidence that was gathered by the All-Party Parliamentary Group on Autism’s review of the autism strategy as well. However, the systems that it set up simply have not been followed through. If you asked for progress on those objectives, it would be difficult to find much: first, because those are not published, and secondly, because there actually has not been a lot of progress in quite a lot of them. What we really saw with the last strategy was how vulnerable a strategy can be to political change. In short, it came out at a time when there was a greater level of public funding. There was a change at the top of Government, and control of that funding became the name of the game. There has not been any plan since that first year.
The last autism strategy was supposed to be underpinned by an implementation plan. That implementation plan was supposed to be a year long, and then replaced by another one to fit in with spending review cycles. Anything beyond the first year was junked. Collectively as autism charities, we raised this and said, “This is really important because there is nothing to drive forward progress”. But we were told at the time that the Government wanted to focus on statutory guidance being reviewed and refreshed. I will merely note that that has still not been consulted on or refreshed.
I really want to make the point around how to properly listen to autistic people next time round, and partially this relies on the Act: “There are obligations in there: have a strategy, have statutory guidance, keep it under review”. It is that review that will be really important. The extent of the last review was, largely speaking, the All-Party Parliamentary Group on Autism’s review. Government did run a survey separately, but the evidence that they gathered was far less than the all-party parliamentary group’s. The all-party group’s review was really good but I think it is time, 15 years on—or more, by the time we get to it—to have a proper big-scale review that goes round, talks to people and gets into the nub of the issues exactly as Adam was saying, because the strategy that comes out of it will be better, and better fit for the future as well.
The other point to make is to think really broadly around the accessibility of autistic people within that. This is not a strategy for one group of autistic people; it is a strategy for all autistic people, and therefore all autistic people need to be directly engaged and supported to engage in the strategy, and that means supporting their communication needs as part of doing that. We—and I am sure all the autism charities—will be very happy to help the Government in doing this. Appropriate dedication needs to be set aside to do it. That is why I would start with a full and proper review of the strategy this time around.
Fazilet Hadi: I would like to focus on successive Governments’ abysmal—in fact, non-existent—planning for the needs of disabled people and to tackle barriers and to remove systemic inequality. We saw the Labour Government come forward with Improving the Life Chances of Disabled People, which was a good document, probably. It was never implemented. We then saw some years where no one did any disability planning. In fact, it is interesting that the Autism Act was a Private Member’s Bill, because one might ask: what have Government been doing for the last 20 years in not bringing forward disability planning and tackling some of these systemic issues that affect millions of disabled people around poverty and right to support and right to equality in the workplace, on public transport, on our streets? Governments have pretty much been asleep at the wheel in planning for disability equality.
In fact, in 2016, we found the United Nations Committee on the Rights of Persons with Disabilities doing a report on the UK, and basically finding that there were grave and systemic violations of human rights against disabled people, particularly looking at three areas: independent living in the community; the ability to work; and social protections, social security and living standards.
In 2021, the Conservative Government did bring forward a national disability strategy that was not co-developed, co-designed or co-produced with disabled people. It was a list of actions from different government departments. It lacked a strategic approach. It was a shopping list. That was picked up, put down, challenged in the courts, and then the Conservative Government came forward in February 2024 with the disability action plan. That was, again, a shopping list of actions with very little engagement with disabled people. We now fast forward to today, where we do not have any commitment to a disability plan that is long-term and systemic, and that tackles some of these really challenging issues around poverty, inclusion, employment and rights—the right support, the right to independence, rights under the Equality Act. None of these things is being acted on.
I am just coming on to how disabled people need to be involved. Again, echoing Adam and Tim, we must be at the table. It was interesting that in one of the modules of the Covid inquiry that looked at political decision-making, quite a few of the civil servants acknowledged that there was no diversity in the room. If you do not have diversity in the room at government level—among Ministers, among civil servants—you have to bring in diversity. You have to talk to disabled people. We are not passive recipients of services. We are real living people who deserve to shape our own futures. We need support, maybe, to contribute. Sometimes we need different accessibility methods and the time to be able to share our views, but we must be at the table. Autistic people need to be part of that discussion, as do other disabled people. Actually, the days in which decisions are made over our heads should be well and truly gone by now.
The Chair: Baroness Pitkeathley, I think some of your questions—
Baroness Pitkeathley: Yes, I was going to say that, Lord Chair, but first of all can I declare my interest that I am vice-president of Carers UK? I think we have already heard at length and very interestingly from our colleagues about the two parts of my question, which were about what should be included in a new strategy and how people with autism should be involved, so I think we could skip to the next question, with your permission.
The Chair: Thank you, Baroness Pitkeathley; that is very helpful indeed. We come on to Lord Elliott.
Q5 Lord Elliott of Mickle Fell: I have no relevant interests to declare. I have a two-part question. I suspect that the second part of the question is the most relevant, as we have covered a lot of ground already. It is: how effectively have the Government implemented the autism strategy for 2021 to 2026? Part two is how the Government should do this differently in future.
Fazilet Hadi: I am not sure that this is my expert area. If the Government are really committed to a strategy, whether for disabled people or autistic people, they must start by co-producing it with autistic people. They must start not by looking at their own shopping list but with disabled people. They must support people to understand the constraints of any strategy, what the Government are prepared to do and what they are not. They must commit funding and enable accountability, so that it is clear what has succeeded in years 1, 2 and 3, and how we need to course-correct if things are not going right. This is not rocket science, but it has to start with disabled people and be accountable to disabled people.
Yes, it has to consider education, public services, social care and health, but also very much look at how employment needs to change. I think some work was done on employment and autism a couple of years ago, but where does this stuff go? It just goes into the ether. There is no rigour in how you implement it and account to people for the progress made. Those are my very general comments on it.
Tim Nicholls: Over the last decade or more, I have worked alongside some really dedicated officials in the Department of Health and Social Care, as well as from other government departments, who are really passionate about taking forward each of the successive autism strategies. That is by way of saying that there are people behind this within government who really believe in what they are doing and who want to progress it.
But look at the fact that, for the last three years, there has not been an implementation plan. The strategy itself says that that is a key part of delivering it. Look at the fact that no funding has been announced since then or that there has been no public update about any of the ways that this has progressed. You cannot really come to any conclusion other than that this strategy has been implemented poorly and continues to be implemented poorly. It really pains me to say it, but we have not even had the statutory guidance updated to reflect the most recent strategy and some of the key legislative changes that have happened since.
Rather than focus just on the past, in terms of looking to the future, what key things should the Government do better next time? Our experience of this time has to be that you need to put accountability into the structure and stick to the structure of how you will take things forward. Accountability at every level, from local to regional through to national as well, has to be firmly embedded and not subject to the changing whims of politics. For the first decade or so of the strategy, there was a programme board that met in government and brought together lots of people. It was not always the most effective but, since then, we have seen several different iterations of something vaguely similar, which also has not met for almost a year. So the structures have been eroded, and you need to cement them in strongly, because that is key to how you get accountability.
Also, and I suspect Adam may well say something similar to this, you have to decide what key things you will take forward. Pick a couple. Pick the ones that you think you can do most about and really prioritise them. Now, obviously I will sit here and say that diagnosis and assessment is one of the biggest issues that we have to face and that has to be taken forward. You still need other ways to make sure that you are taking forward action across all the areas of the strategy that are set out in the Autism Act but, if you are going to do something, you need to do it properly. So clear prioritisation is a big thing.
Then funding is important to whatever gets taken forward. Being really clear, we are coming up to a spending review cycle and we know that we have the next three years. There will be another three years beyond that before the next spending review. How will improvements be funded? What will be set aside and how do we make sure that it goes to improving the lives of autistic people? Those are the key things that I would look for the Government to do in the next strategy.
Adam Micklethwaite: I agree with what Tim and Fazilet said. Implementation of the current strategy has not been effective. It needed concerted action across government. It was a cross-departmental concept with accountability needed at the high level—central government—but it did not get that. It had a small team in the Department of Health and Social Care who, as Tim said, were great. They were doing their absolute best, but the mechanism was not proportionate to the strategic importance or the breadth and depth of the strategy.
There was an implementation group, which the department ran, which, positively, was co-chaired by an autistic adult and had the involvement of autistic people, but it was much more like a reporting mechanism ticking things off a list, rather than a strategic way of driving the programme forwards. Tim mentioned the implementation plan, which was dropped after year 1.
Key commitments and key work fell away from the strategy. I am thinking particularly about commitment to a national research action plan, which was in the strategy in 2021, and work on data. Neither of those things happened. There was a bigger team working on the strategy in the NHS, which was very positive, but it did not have enough weight on the national decisions taken in the NHS to have had much of an impact. Again, there were brilliant people there, doing really good and important work. Overall, there was a lack of sharp accountability for the delivery of this strategy.
In the future, I agree with Tim that, particularly in an environment that is likely to be highly resource-constrained for the foreseeable future, it is important to think about a smaller number of actions that are not just things that are ticked off a list but that really address the deep barriers that we have been speaking about, and are feasible to implement with the right governance. I would also put assessment and diagnosis at the top of the list. There is a need to shift from the current deficit-based model that we have, which is all or nothing, to something which is more strategic, more nuanced and that is based on early detection, identifying strengths and needs, and giving a more nuanced approach to assessment. You could then make that the basis of a pathway through life into which all types of support play.
There needs to be a forensic piece of work to remove the barriers that currently exist to commissioning the right support and to remove those blockers in the system, particularly in health and social care. There is still a poor understanding of what specialist support is there to do and how it can help. We need to deconstruct those barriers and reconstruct a model that is more likely to work.
Thirdly, the Government need to put a focus on what works in supporting autistic people right at the heart of the system. At the moment, it feels like it is over there somewhere—like it is marginal. There is increasing evidence, including economic evidence—I know you are going to be speaking to Martin Knapp shortly, who has done some brilliant work on that—around services and supports for autistic people, but it is just not nearly as visible as it should be. It needs to be embedded in the system.
There are also gaps in codifying and evaluating the really good practice that is out there at the moment. There is an opportunity to lock in a much more systematic process that takes you through autistic people’s experiences to practice and commissioning, and that creates a virtuous cycle, if the Government do that. That is what they promised to do in the current strategy. Those are the three things that I would put on my list for the Government to prioritise in the next strategy.
Q6 Lord Hope of Craighead: I have no relevant interests to declare. My question, as did the previous one, falls into two parts. The first is: how accountable are local authorities and public services for progress against the Autism Act 2009, the autism strategy and statutory guidance, and disability policy in general? The second part is: how should their accountability be strengthened?
Adam Micklethwaite: As we have noted already, there have been progress reviews, including the APPG work in 2019. There was also a self-assessment framework, which happened earlier in the process—about 10 years ago, I think—which was positive.
To answer your question directly, if you are talking about being held accountable with consequences—meaningful, sharp accountability—then that has been lacking through the system. In fact, that is probably an understatement: we have seen no real evidence of it being there. Successive Ministers have been responsible for the autism strategy but, when challenged on the lack of progress in improving autistic people’s outcomes, there has not really been any action, change or direct engagement with that in a way that is meaningful and reflects an accountability such that they will go towards it and try to change it.
On the point about local authorities, we have seen similar things happening at a local level. As we have noted, the processes for trying to challenge decisions can be, frankly, awful for individuals and families. But it is important to understand again what underlies all this: those deep barriers.
There has not been sufficient investment, and that has impacted on accountability. Nobody has really been accountable or accounting directly to the people that the Act is for, so we have not seen that happen either. Overall, I would characterise it as a culture of sometimes seeming to avoid the problem, which is not what accountability should be. In the Autism Alliance, one of the things we found when we did our research in adult social care in 2023 was that 56% of autistic people do not even try to get support because they think there is no point, and I think a lack of accountability weighs very heavily in their decision.
In the future, you could do a whole range of things to improve accountability. You could make improvement in outcomes a condition of success: there would be a target or measure, and somebody would be directly accountable for making that happen. You could engage more directly with the processes of recourse, which arguably need to be a lot stronger in the system. In Scotland, they are looking at the idea of a commissioner for autistic people and people with a learning disability. In Northern Ireland, they have a reviewer, whose job is to review and scrutinise the progress that the Government are making or not and to challenge them on that. There are other ideas that would play into the space of co-production and involvement. For example, you could have an autistic people’s panel to whom the responsible Minister must account on an annual basis. There are various ways in which you could strengthen accountability in future, but we have not seen the accountability we should have seen for delivery of this strategy.
Tim Nicholls: I agree with everything that Adam just said. I feel like real accountability here will be by doing, by making sure that we have the systems in place to make the changes happen that are in the strategy and are relevant to autistic people’s lives.
I will briefly dwell on the self-assessment framework, because it was a really good tool for local authorities, civil society and Government, but it is probably underappreciated. Some three or four times through the first decade of the Autism Act’s life, the Government carried out self-assessment frameworks, which in essence are surveys that go out to local authorities, are filled out and are sent back. Locally, there was a really good point for discussion there, because the autism partnership board needed to see and sign the return—or sign it off, in some cases—and so it had the opportunity to check and challenge. That is key to local accountability and democratic accountability, and we have no similar thing in the system now.
Also really key was that local authorities filled that out at a really good response rate, around 95%. The rate of returns on any other self-assessment framework put out by the Government was way lower than that, so people clearly thought it was an important thing to be doing. People will always be sceptical of the honesty of the answers, but some local authorities were marking themselves red when they had RAG ratings. There needs to be a reason that people were willing to put themselves down as red and were open to that public scrutiny, because it was published.
That is one of the areas where we have lost overall accountability from the system. There is no way to go, “I am finding this hard as a local commissioner. What offer comes to help me do this locally?” The sharing and development of best practice has been stripped out of the system and does not exist. There is no tailored work that then goes in to help these areas do better. If we are looking at practical ways to improve things, that would be a really good place to start. Carrying out a process a little like the SAF would also be a really good way of getting those genuine answers from local authorities because, while we now collect much better national-level data on key things such as diagnosis and employment, you still do not get the intelligence that you got from what was happening on the ground in those local areas, which really helps you assure yourself that the autism strategy is being implemented across the country.
Fazilet Hadi: I was trying to think of an area of government where there is good accountability that we could learn from, and I really could not think of one. There is a real tension in Government—because, as a disabled person, my life is quite joined up, is it not? Maybe I work, maybe I have benefits, maybe I use public transport and maybe I need social care. I want all those things to join up. If we look at how government works, it is very siloed: accountability would have to go through DHSC to NHS England to a trust, or through DfE to a school, or through the government department on local authorities and communities to local government. It is really tricky. How we get accountability for strategies that are cross cutting is really problematic.
Tim and Adam’s suggestion was to focus on two or three things, do them well and follow them up. Maybe then you get that accountability, because you are focused on one government department and one set of bodies implementing it, but it is very hard to get that joined-up accountability in our system today.
Lord Hope of Craighead: Thank you all very much for your interesting answers.
The Chair: I want to say thank you to our witnesses for a thoughtful and thought-provoking session today. It has been very helpful for us all. You will be sent a transcript to check for accuracy. I would like to draw the discussion to a close. We will continue with our second evidence panel in a moment.