24
Examination of witnesses
Dr James Cusack, Jolanta Lasota, Adam Micklethwaite and Tim Nicholls.
Q193 The Chair: Good afternoon and welcome to this public meeting of the House of Lords Committee on the Autism Act 2009. This is the committee’s final public evidence session, and today we are delighted to welcome back four of our witnesses, who we heard from at the committee’s first evidence sessions on 10 March: Dr James Cusack, CEO of Autistica; Jolanta Lasota, CEO of Ambitious about Autism and chair of Autism Alliance UK; Adam Micklethwaite, director of Autism Alliance UK; and Tim Nicholls, director of policy at the National Autistic Society. Welcome back, all of you; we are extremely grateful that you have taken the time to see us again.
In this final evidence session, we will invite our witnesses to reflect on the evidence that the committee has heard over the past four months, including from Government Ministers who gave evidence last week, and to look ahead as the committee begins preparing its final report for publication in November.
The committee’s job is to scrutinise the Government and their policies. We are not able to help with individual problems or complaints, and we do not permit personal criticism of individuals, as they do not have a right to reply. Members of the public can watch our proceedings either in person or online 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 and those of our special adviser, Professor Laura Crane, have been published on the committee’s website. In that context, Professor Crane has asked me to declare a specific interest in relation to one of today’s witnesses, as she was invited to join the board of Autism Alliance in May 2025 and will take up the appointment in September 2025. Having made that introduction, I now ask Baroness Pitkeathley to ask the first question. When you answer it, please introduce yourselves.
Baroness Pitkeathley: Good afternoon. It is very good to see you all again. As you know, we have received a huge amount of evidence to this committee, and I want to ask you for your response to that. In particular, what is your response to last week’s evidence from Government Ministers? Let us start with you, Adam.
Adam Micklethwaite: Thank you. I am the director of Autism Alliance UK, and I have indirect lived experience of autism in my family. The main point I would make about the evidence given last week by Ministers is that nothing we heard gave us assurance that autistic people’s outcomes will improve. A lot of what we heard suggested a lack of awareness of both facts and evidence.
The main example I would give is on assessment and diagnosis for autistic people. First, the lack of support for autistic people and their families has undoubtedly had some effect on the number of referrals for autism assessment, particularly for children and young people, but it is one factor among many. To focus, as the Minister did, just on the period between 2019 and the present ignores the fact that rates of assessment and diagnosis have been increasing steadily since the turn of the century. This has been documented in research from Newcastle University published in 2023. This is a long-term demographic change; it is not a social choice.
Secondly, diagnosis has value in its own right. There is plenty of evidence on how diagnosis increases self-understanding, resilience and self-efficacy. Autism is accepted to have a significant genetic basis—it is lifelong—so there is no reason for restricting or controlling the ability to know that you are autistic.
Thirdly, there is almost certainly some variance in how diagnostic thresholds for autism are applied. Frankly, this is what you would expect as understanding continues to increase across society. But this is not, as it seems to have been portrayed last week, a crisis. Rather, it is a signal that we need to do a serious piece of work to ensure that the strength of the assessment model is maintained as society continues to change.
Talking about an increase in demand, as we heard from the Minister last week, and saying that this is something we should try to dampen down, or indeed characterising it as a general problem of overdiagnosis, fails to recognise the intrinsic value of diagnosis. It undermines the lived experience of hundreds of thousands of autistic people and their families, and it forgets, fundamentally, that this is a failure of society and services to adapt to a human difference that has always been there.
Baroness Pitkeathley: I think we get the gist of how you feel about it.
Jolanta Lasota: I am the chief executive of Ambitious about Autism, I chair Autism Alliance and I am the mother of a 20 year-old autistic young man. What did I welcome last week? I welcomed the commitment to refreshing the autism strategy, which is in the Act. I welcome a commitment to it being measurable, tangible and coproduced, with an implementation plan. Those are all good things to hear, and it is progress on what we have at the moment. We are now ready to support, but we have no time to lose because we have no implementation plan for the current strategy, and we are a year away from a new strategy, so we need to do something.
I welcome the commitment to mainstream schools being more inclusive. We need to see tangible, evidence-based proposals that will show measurable outcomes for autistic children and young people and that are not simply Treasury-driven.
I welcome the commitment to reduce the employment gap for autistic people. We know that only three in 10 autistic people work. We now need to see detailed plans for autistic people. We need a recognition that what has happened in the past has not worked. Many autistic people are a very long way from the workplace, and we need to address that.
I welcome the concept of autism being mainstreamed. To me, “mainstreamed” means that all policy takes into account autistic people. It does not mean a dilution of the need for specialism for autistic people, which is why we have an Autism Act. We know that generic methods and approaches do not always work.
I was concerned about the language around diagnosis—the implication that there has been an exponential increase as opposed to a long-term trend that, on an ongoing basis, has not been addressed by successive Governments. I was also concerned about the concept of managing demand. We seem to have language that has gone from “need” to “demand”, as though autistic people are a burden on the system and that we need to suppress that burden. We know that autistic people are just people who have needs and that a diagnosis is a good first step towards addressing those needs.
I read the Government’s written submission, which included lots of great initiatives, but I could not see much evidence of how these initiatives had specifically met the needs of autistic people. An autism strategy should be talking about how we meet their needs. There is a lack of concrete commitment to systemic change. We talk about mainstreaming but there is a lack of detail about what that means, and a lack of cohesive working across government. We could see in the evidence some joint-department working, but that is not the same as cross-government working.
Tim Nicholls: I agree with what has been said so far. I have four broad reflections, but I will focus mostly on the first one, if that is okay, which is similar to what some of my colleagues have said. But I will go into a bit more detail on some of the Care Minister’s language last week around diagnosis. I feel that it is important that we are able to put the record straight on some of the figures. The Minister stated that there had been a 12-fold increase in demand and that this was “almost exponential”. I think we all remember what an exponential graph looks like from the Covid pandemic: it gets steeper and steeper until it is vertical. If you look at the diagnosis waiting times data, it is a slow and steady increase, just as Jolanta was just saying.
Some of the numbers might help fill this in. Each month, there are a number of new referrals. That peaked in 2023 at about 15,700. If you then look at the number of closed referrals—ones that are now off the waiting list—it is generally between 7,000 and 9,000, and it has never got above 10,000. So there is a gap between that maximum of 10,000 coming off the list and the 15,700 going on it. That gets added on each month. That is exactly what the data shows us.[1] It is not an issue of demand; it is an issue of supply. There are not enough diagnostic assessments taking place to drive down those waiting lists.
I particularly want to focus on the use of language around “exponential”, because that suggests that this is incredibly difficult to solve. That is wrong. We know what it would take; in fact, NHS England knows what it would take and how much investment it would take to bring down those waiting lists. By phrasing it as “exponential” and saying that capacity will never catch up, we are undermining the ability to find solutions. I would invite the Committee to ask the Minister to provide more evidence or clarify some of the things we said last week, because I think, on the basis of what he said, some of it was not an accurate interpretation. Importantly, he said it four times, so I think it was a point he was trying to make.
Minister Kinnock mentioned a few times that he felt that stigma had reduced. While we have seen awareness and, to a certain extent, understanding of autism increasing, stigma remains pervasive and a sinister force in our society. It is important that we see that as still existing and creating barriers for autistic people and that we do not use improvements in understanding as an excuse for why we are seeing more autistic people coming forward. Of course, that is why, but it is does not mean it is a bad thing; it is a great thing that more people understand autism.
There was some brief conversation, and an evidence session in particular, around needs-led approaches. Needs-led approaches are a brilliant way of making sure that the right support is given within a context to a person. We at the National Autistic Society are very keen to emphasise that that debate needs to be had separately from the debate around diagnosis and how you solve diagnosis issues.
Improving needs-led support should not be used to try and drive down diagnosis waiting times. Diagnosis is for life. It will enable you to know so much about the future of your life and how you might approach, feel or experience certain things. Needs-led support is context specific. It can be about getting the right support in school. You need to know the answers to both, and that is incredibly important.
Finally, I want to put on record that it was good to hear from the Employment Minister, Alison McGovern, about the Government’s continued commitment to closing the autism employment gap. That is absolutely crucial.
Dr James Cusack: Thank you for having me. I am the chief executive of Autistica, and I am also autistic myself. I agree with a lot of what the other three panellists said. I will try not to repeat the points that were made, but I think there some things I can add.
It is really positive to hear commitment to the new autism strategy and new implementation plan. That is absolutely essential. Like the other witnesses, I am very concerned about the language used around demand. At the last evidence session I participated in, I said that if we were to treat any other group in the way that we treat autistic people, we would not see this sort of language as acceptable. Why do we not apply that language to anyone else in the health system and see how we would respond to that? If we talked about suppressing demand so that people could receive other forms of diagnosis and care, would we consider that acceptable, ethical and the morally right thing to do when we have a nationalised health service? I do not think we would.
I have another issue with the way the Minister provided evidence. I read an article yesterday in the Atlantic, which talked about how the Health Secretary in the US is acting as if autism research has not been going on for the last 30 years. I felt the same way when I read the Minister’s comments. We understand a huge amount about why autism diagnosis prevalence is increasing. We understand perfectly well that there are changes in criteria, improvements in clinical practice and better awareness, understanding and attitudes. We also understand perfectly well that there are sustainable approaches that can ensure that we assess people in a sustainable way that is efficient in the context of the resources that we have available. That is what is really exciting about the opportunity that we have and why we cannot allow this debate to become a distraction, because, actually, we have ways in which we can support and assess autistic people.
We now have new clinical trials coming out, which are showing effective ways to support people who are autistic and are experiencing anxiety, as well as new ways to get autistic people into work, to change attitudes and to assess people’s health needs. We have all of this exciting work going on. What we need to focus on is implementing that and ensuring that the autism strategy does this effectively. I hope that the Minister will avoid turning this into some sort of reductionist, culture wars-type conversation, because we need better than that for autistic people and their families.
Baroness Pitkeathley: I thank all of you very much for your responses.
Q194 Baroness Goudie: Good afternoon. I will ask the first part of the second question; my colleague Lord Addington will ask the second part.
The Government are planning a wide range of policy changes that will have a significant impact on autistic people, including the National Health Service 10-year plan, SEND reform, and changes to work and benefits policy. What opportunities do you see there? What risks do these changes present for autistic people? Risk is always a worry, and people are afraid of change.
Adam Micklethwaite: The key point is that the Government’s plans need to address the barriers that specifically affect autistic people and their families. To go back to the previous point, the reference to mainstreaming autism made by the Care Minister could go both ways: it could be a good thing, in the sense that their needs are genuinely met, or it could mean vanishing autistic people’s experiences and outcomes into a generalised approach that does not have any difference at all. So it needs to be specific.
The opportunity is to engage directly with the Autism Act as it was intended: as a social inequality law to address an unacceptable social inequality, and to change the system. However, the major risk is that the Act and the national autism strategy—despite the welcome commitment we heard from the Minister to develop that and, indeed, to work with other partners on it—are still treated as marginal. Despite the positive intent that Ministers undoubtedly had last week, the impression they gave was that the Autism Act is marginal and more like a tick box than a landmark social inequality law. That is the first risk.
The second risk is the agenda of cutting costs—Jolanta referred to the Treasury agenda—and that this is stronger than the driver of reform to meet needs. Therefore, because they are already facing unacceptable inequalities, autistic people bear the sharpest edge of a decline in services because of a reduction in costs.
There are undoubtedly strengths in the Government’s vision: the shift to prevention that we have heard about, as part of the reform of the NHS, the shift of support into the community; and the ambition to make mainstream education inclusive for all children. These are all good things that would, in principle, help autistic people, but, without actions that are specific to autistic people’s experiences—and, indeed, without positioning those experiences as a test of wider reform—the risks far outweigh the outcomes. So it is really important that the Government get this right.
Jolanta Lasota: Autism needs to be embedded into all policy initiatives. It is not a niche issue; neurodivergence is now a large-scale issue, and we need to think about it in all policy. It is important to say that the NHS 10-year plan does not mention autism, which is really disappointing—especially as it was referred to in the evidence session. The opportunity here is that it can be rectified in an implementation plan, so we still have a chance to talk about it in the autumn strategy.
The SEND reforms need to focus on autistic children. They have the highest number of EHCPs in the system, so we need to think about how the reforms will change those outcomes. We need to be specific and evidence-based, and we need any reforms to be holistic and phased. We also need to create change that is progressive but does not create more risk for the children who are already the most vulnerable in the education system.
What is common across all of these initiatives is the opportunity to identify and meet need early. We need to celebrate the fact that we understand how to do this and the opportunities of doing this; we need not to see that as a negative.
One of the big risks is that we miss the opportunities across all of these reforms to do something really systemic—something that improves health outcomes, education and employment. Another risk is that we pull away and remove rights from people before we have created a more accepting and sustainable system. The last risk is that, in this debate, we damage the progress that we have made in understanding autism and in the acceptance of autism; that would be hugely damaging to children and families on the ground, who would be subjected to prejudice and a lack of support because of that sort of debate.
Q195 Lord Addington: In the context of the Government’s wider strategic aims and funding pressures, what should the priorities in their new autism strategy be? Pick one topic first; we will then see whether we can get to other ones.
Tim Nicholls: Picking one topic is hard but I will do my best. This one overlaps with some of the comments that have been made about the NHS 10-year plan: health and care inequality. This is an area where we should see a driving force of progress behind the new autism strategy. One of the reasons for that is exactly the point that Jolanta made: autism is not mentioned in the 10-year plan. I completely understand that the 10-year plan is much more about structures and reshaping the NHS but there is a risk that we lose the focus on autism that has been built within NHS England over the past five to 10 years, which was particularly reflected in the last NHS long-term plan.
There is a gap in strategy and implementation. The strategy should now reach across government, particularly in relation to the health service, and consider what actions are needed to help address the systemic inequalities that exist in health and care for autistic people. Obviously, we need to look at diagnosis waiting times, but we also need to tackle the drivers behind why the evidence shows that autistic people are at risk of dying early. There is nothing inherent about autism that should mean that is the case.
We also need to make sure that there is the right level of services in an area to keep autistic people mentally well. We know that autistic people are at greater risk of developing mental health problems and of being detained under the Mental Health Act. Changes are coming through down the road—they are very close to being passed—that will help address some of that, but community services will be the backbone of making sure that that actually happens. Without any assurances around how we can make sure that there are sufficient community services in every single area, we worry that we will still occasionally see that drive towards detention.
Finally, this is probably a little more behind the scenes but a big piece of work is around how you make the neighbourhood care plans work. That is a brilliant aspect of the new 10-year plan. How do you make that work for autistic people? What does it look like? How do you make sure that autistic people’s needs are factored into what ICBs make sure happens on the ground in each area? At the moment, what we tend to see is that, at a local level and even at a regional level, autistic people are forgotten in commissioning. With the narratives that we are seeing take hold, there is a greater risk of that happening deliberately rather than by omission.
Dr James Cusack: From my perspective, the themes of the 10-year plan are really interesting in the context of autism; they have real potential to help and support autistic people. A key focus for the Government is economic growth. In the context of developing something like an autism strategy, they need to understand that autistic people are not a group of people that you can marginalise with no economic consequence or cost. A failure to identify and understand what every single person in your society needs to thrive will lead to missed opportunities in that context.
I find it interesting that, on the one hand, the Government are really interested in economic growth, but, on the other hand, they do not see the opportunity here in terms of developing a robust autism strategy. If you identify people quickly and understand what support they need, they will thrive. If you can help manage someone’s mental health, they will thrive. If you can get somebody into work, that improves mental well-being and health for most people. We know that things such as health checks are effective in supporting autistic people to manage their health problems. All these things are central to the Government’s agenda around economic growth. I encourage the Government to see this as an important part of the jigsaw to ensure that they achieve that objective, which is obviously very important to them.
Q196 Baroness Ritchie of Downpatrick: You have given us some very useful evidence, as you have in the past. My question centres on the issues of accountability and responsibility. You and other witnesses have told us that responsibility and accountability for implementing the current autism strategy have been weak. I suppose that is in some of the stuff that emerged from last week’s evidence. Therefore, what would be the most effective levers to strengthen responsibility and accountability for improving outcomes for autistic people, both through the Autism Act and in each of the priority areas in the autism strategy?
Adam Micklethwaite: It is important to recognise that accountability and culture are closely linked. If you have a high level of stigma and prejudice—which, unfortunately, we do with autism—combined with low levels of understanding, that will act as a brake on accountability. Addressing that should be done in parallel with measures to strengthen accountability. The Government should lead from the front on this, so they should show that they are prioritising autistic people, actually working with them, validating their experiences and giving them a voice. Other actions around culture should happen in tandem with actions on accountability: for example, learning about autism and neurodivergence as part of the curriculum in primary schools.
The second point is that the incentives to be accountable across the system, as we have noted in previous sessions, are generally weak. The consequences for Government Ministers, local commissioners or head teachers who are not meeting the needs of an autistic individual in line with their legal duties are, frankly, not clear. When things go wrong, very little really happens or changes. Sometimes major inquiries are commissioned, and they can have a bigger impact, but in most cases, for autistic people and their families, there is little real recourse and processes of appeal are complex and exhausting.
My third point is that there is a difference between accountability for process and accountability for outcomes. Some positive processes have been introduced in recent years—the Dynamic Support Register, for example, in health and care—but unless commissioners and service leads are accountable for actually improving outcomes, both at the point of contact and in the long term, the focus will tend to be just on completing the process.
By itself, the Autism Act does not create stronger accountability, because its single provision is to have a national strategy—so it is vital that the strategy does that. Frankly, the extent of the stigma and the huge pressures on funding mean that there need to be some sharp measures. We have talked about self-assessment for local areas and local authorities in previous sessions. That may have its time again, but relying on it in the current environment is unlikely to achieve much.
In the current strategy, there is no framework for understanding whether progress is actually being made. This is the key point I wanted to make: outcome targets are vital for having meaningful accountability. They should be co-produced with autistic people and their families. The Minister responsible for the national autism strategy should be given accountability for meeting those targets and required to account annually to a national panel of autistic people, ideally through public hearings. Statutory guidance, which is also a feature of the Act, should require local commissioning bodies to replicate these same targets and to vest local accountability in one person with appropriate levels of decision-making power. Targets are vital for accountability, but getting that cascading through the system is also really important.
One final point: Scotland has considered the case for a commissioner for autistic people and learning disability who is able to investigate breaches of the law and hold the Government to account. This idea should be explored in England too, although potentially with a stronger focus on challenging the lack of local accountability, particularly given the focus on devolution, and on shining a light on excellent and poor practice by publishing regular case studies. Another idea to consider is the reviewer that has been introduced in Northern Ireland through the Autism (Amendment) Act (Northern Ireland) 2022, which is similar but focuses more on scrutinising government policy. There is a lot that could be done to strengthen accountability.
Jolanta Lasota: The first thing is to recognise that we do not have accountability; we have many reports published on failing systems, either individually or across the board. At the weekend, we had the report from the local authority ombudsman that showed that we have had a 250% increase in complaints in five years. Nearly 100% of those are upheld. And that is the tip of the iceberg: those are the people who know how to complain and know how to take the case all the way up an ombudsman.
We have to admit to ourselves that we have an accountability gap, and accountability starts at the top. We need political accountability; we need people who are confident in talking about autism, who are committed to autistic people and committed to making real change with autistic people and for autistic people. That requires quite a big cultural change and requires people to want to come and speak about autism and not necessarily have to come to speak about autism. We need ministerial and parliamentary accountability. We need reports back on progress against the autism strategy through Parliament. The strategy has to include a framework that holds local authorities and ICBs to account; otherwise, we will see huge, wasteful divergence in approaches, in evidence, et cetera.
One of the things we heard at the evidence session was this idea that we are going to devolve accountability. We know that some devolution is useful, but not all devolution is useful. Where we have a scarcity of understanding and evidence, we need to hold some principle centrally about what works, and then we need to cascade those, but what we do not need is every area wasting resources in reinventing the wheel.
In education, we are about to see SEND reforms in the autumn. We need to really have accountability, in terms of numbers, about how any change to the system will change lives for autistic children and young people in schools and in education, and we need to be very careful about changing the system if we cannot demonstrate those numbers.
In employment, we need the same. We need to see how these changes are going to increase employment for autistic people who desperately want to work but cannot, and we need accountability about changing the system where it needs to change. The 10-year NHS plan needs to say something about autism, even retrospectively, because we are not signalling to people that autism is important; therefore we cannot expect people to be accountable if they have not had that signal from central government.
Tim Nicholls: I will briefly make three points. I agree with what has been said so far. I think the absence of an implementation plan since the first year of this strategy has completely hobbled its ability to make progress, and we have essentially seen the strategy paused. I think it is really important that we need a budgeted implementation plan with specific outcomes that need to be met. Those evaluated and updated and new implementation plans need to be put forward. That is just the way your strategy needs to work.
Secondly, I want to look briefly at how we can get better data at a local level: I think I mentioned this in in the first session as well. I loved the self-assessment framework, it was a really good tool, and I think it is really to the detriment of autism policy that it is not there any more. Ninety-one per cent of councils used to submit their responses to that. That is astronomically high to adopt for a voluntary survey from councils under real pressure, and they honestly answered those questions often red, amber and green, because they knew that there was a strength in acknowledging where your weaknesses were, because it meant that organisations like ours and the Government could say, “Okay, these are the things we need to go on and create. This is the extra guidance that local areas need”. It was actually also the data that first identified the extremely long waiting times for diagnosis that existed up and down the country.
The committee also noted, last week, the strength of having observatories in public health, for example, as used to exist in Public Health England. That work, the SAF, used to be taken forward by the Learning Disability Observatory. That is not necessarily the most appropriate home for it any more, but that was a really positive institution that now no longer exists.
Finally, on the opportunity that the legal system gives us, Baroness Browning in her comments last week pointed to the Explanatory Notes to the Act and said that actually, as well as the ability for an individual to bring a judicial review, there is something in there that says that the Secretary of State could take specific legal action. So what we need to be looking at is how the Government can be more bullish, frankly, in those areas where that is required in order to kick-start change because, 15 years on from the Act coming into force, it is not good enough where areas no longer have partnership boards and do not have a named lead for commissioning. Specific action may be needed to change that.
Also, we need to think about how the Secretary of State might be able to use his powers under the Health and Care Act to direct the NHS locally to do particular things. With a smarter, more intelligent and, dare I say, bullish application of the law, we could also see an awful lot of behaviour change at the local commissioner level.
Dr James Cusack: I will try not to repeat the previous points made. To summarise briefly, this review is potentially the closest thing that there has been to any form of accountability around the Autism Act. In summary, what we have seen is very little in the way of accountability; very little in the way of clear objectives, measurables and outcomes; very little in the way of an implementation plan; very little in the way of commitment to evidence-based practice; and very little in the way of commitment to enforcing the Act by means of something like a commissioner or reviewer, as Adam mentioned.
That is a real shame because, if we have that accountability, there are real opportunities. I look at autism in the sector as a whole. It is not all negative. As charities and autistic advocates, we have all held ourselves accountable and committed to doing and developing things. At Autistica, we have committed to developing health checks, doing research on autism and anxiety, and finding new ways to diagnose people. As a consequence of that level of commitment, we have made huge, real progress. What I would like to see is the Government show that same enthusiasm for holding themselves accountable, for committing to achieving things for autistic people and for delivering real change.
There have been examples where that has happened and we have seen positive developments; one example is the Government funding trials on anxiety and interventions for autistic people. We now have evidence on that. If we could see that on a more global scale across autism, the opportunity is huge, because we have a huge number of solutions. So having that accountability and developing those mechanisms for accountability presents real opportunities for the Government and autistic people in terms of delivering better outcomes.
Q197 Lord Crisp: None of you have mentioned responsibilities, as opposed to accountability. With accountability, you are talking about groups being accountable for making sure that something happens. I am interested in responsibility as well—that is, the people on the ground who will actually do something. You cannot have a plan without somebody having responsibility, which then leads to accountability. I am conscious of time. Perhaps I could ask this of Jolanta: do you think that the responsibilities are clear enough where people are actually doing the work, rather than sitting on the committees that oversee them?
Jolanta Lasota: The challenge is that the people who actually do the work on the ground do not have the resource, support or mechanisms to help them deliver what they need to do. For example, I know many teachers and schools who say, “I want to support autistic children and young people but I haven’t had the training. I don’t have access to specialist support and I don’t have any resource around me to do this”. So the challenge and responsibility is that those accountable have to help those people who are responsible to deliver. I do not see an unwillingness on the ground; what I see is a lack of real infrastructure, resource and support for those people.
I think that there is a widening of responsibilities, for example in mental health services. Last time I was asked, “We don’t have any more money, so what are we going to do?”, I said, “Well, actually, we have a problem with mental health services, where neurodivergent children and young people are not accepted into those services”. It is a direct responsibility of those services to equip themselves to be able to support those children so that they are not turned away. That would create a more efficient system that responds quickly to need, rather than diverting children elsewhere. So there are responsibilities, but I do not think that it is possible at the moment for people on the ground to deliver well without accountability at the top in terms of providing them with support.
Lord Crisp: I was not saying that they are alternatives. I was just testing out whether you thought that people did have clear responsibilities and whether you could point to people in services and say, “They are the people responsible”, or, “There should be somebody in that service who is responsible”.
Jolanta Lasota: I would just add that, where you have cost pressure, what we see in all our services across the board and across the country—whether it is in education, health or social care—is the shunting of responsibility. What we see is young people’s needs being shunted on to someone else. They get excluded from education, then they are on a waiting list for mental health services and then they are below a threshold for social care support. What we are seeing is cost-shunting.
Lord Crisp: I understand that.
Q198 Baroness Browning: I should declare at the beginning, as the National Autistic Society is giving evidence to us this afternoon, that I am a vice-president of the National Autistic Society.
Can we drill down a little deeper into the question of the numbers that we are currently facing? What impact might they have on a new strategy in a year’s time? In 2021, the Government’s autism strategy cited an estimate that one in 100 people is autistic. We have already mentioned the fact that the Government have shared evidence with us that diagnosis rates are now one in 20. I know that you have asked us this afternoon to clarify that with the Government—I am sure that we will go ahead and do that—but, given that a new strategy is due next year, we hope, what design of public services is needed to ensure that all autistic people receive the right kind and level of support, whether or not they have a diagnosis? If we are unclear on the people who have a diagnosis, we have absolutely no idea—it is as long as a piece of string—how many people do not have a diagnosis. How would you suggest that that should be accommodated in a strategy? Can we begin with you, Adam?
Adam Micklethwaite: Of course. When you get to James, he will probably say a bit more about prevalence and what we know about prevalence now, as compared to what we knew previously.
On your specific point around who has not been diagnosed, Liz O’Nions and her colleagues did a piece of work two years ago that tried to estimate underdiagnosis at a national level—in other words, people out there who are autistic but have not had a diagnosis. So there is definitely figuring around that; clearly, it should be part of the Government’s plans.
In direct answer to your question, the implicit principle in all of this is a needs-led system. We have all spoken about that in various ways; it sits at the heart of all the evidence that we are providing. Needs really should be identified and met across all public services, whether that is in education, healthcare, justice or, indeed, employment.
The key point is that the national autism strategy should be a source of energy and direction for that kind of process at a national level, in order to help all services become more needs-led. The case for this kind of approach is already there. It is reflected in the law: the Equality Act, the Care Act, and the Children and Families Act are all on the basis of need, not whether you have a diagnosis. Frankly, the shift towards prevention in healthcare is implicit in the Government’s plan, but let me state this again: every person has basic needs that, if met, enable them to function, to participate in society and to contribute to society, but, if not met, reinforce and widen inequality.
The needs of autistic people and other neurodivergent people can be harder to identify, not least because of low knowledge and understanding in society and continuing cultural prejudice. Identifying and meeting needs can—and frequently does—lead to better outcomes for those individuals, as well as a reduced chance of their needs escalating in future. Then, you have more cost-effective spending on services, so there is a very strong case for a needs-led model as a concept for public services.
It is probably useful to outline the principles that you might apply to that kind of system. You would recognise that basic needs are not extra benefits or nice-to-haves but are essential and present for every person. You would try to identify needs as early as possible in life—with clinical input where required. You would try to get the right support and adaptations put in place the first time. You would try to establish an acceptable level of support and adaptation that goes across the whole mainstream sector, whether in mainstream schools or the health service. You would need to have an individual understanding of strengths, needs and experiences; to make that a common thread through all services and through life; and to keep that updated as required.
The Government could choose to apply these principles across education, healthcare, employment and everything else. The national autism strategy should be a core part of that process and should help to make that happen at a broader level as part of the Government’s reform programme.
Jolanta Lasota: I will be shorter because there are people here who will have a lot more to say. First, the Government need to commit themselves to updating their prevalence study, as we do not have very accurate data.
Secondly, we clearly have problems around reporting. We know from the Children’s Commissioner’s report that we have gaps in the data on diagnostic waiting times because ICBs are recording very differently. We do not necessarily understand the first time that a child sees a clinician; we understand the first time that the clinician picks up a case, which is a very different measure.
Like Adam, I think that there is a difference between recording diagnosed autistic people and making sure that the data is accurate. We will probably never be able to get the data accurate for undiagnosed people. Therefore, we have to think about how we can create a universal system that will support people well, whether in work, in education or in healthcare. We need to be better at collecting and analysing that data.
We also need to remove the panic from the data. There is a note of panic from the Government when they talk about “increased prevalence”. Is it not a celebration of our society that we have understood autism, that we have understood that we can help people to have better lives, and that we have understood that all of this might result in better outcomes in employment or in criminal justice—any of those things? We need to remove the panic around the data. Now is a time of change for our society. We need to recognise that, as a society, we are ahead of many countries. Surely we should be proud of that. We can celebrate that and share that know-how with other countries.
Tim Nicholls: I have already made my feelings quite clear on the comments from last week about the increase in demand that has been claimed. I want to add my support to what Jolanta said about the need for a new prevalence study; I am sure that James will talk about this more. One of the issues that really holds us back is that there is no single point of truth in the system at the moment. There is no completely reliable dataset that can give us the right answer.
What I would like to talk about is what has been stripped out of the system that was previously keeping people happy and well—although I am not saying that it was always good enough—which is preventive support and universal support. Those are the things that we have lost in society. That includes the ability to go out and socialise, make friendships and stay happy and well; all have left the system over the past few years because they were seen as a “nice to have”. If you want to see the consequences of that, look at the data on how autistic people experience mental health problems and how they end up detained in mental health hospitals because they reach crisis.
I would like to see this in the strategy; we called for this in the last strategy, particularly in terms of the need to have an innovation fund around the new ways to provide preventive support. However, we are at a point now where it is not about piloting new things. There are a number of things out there. For example, at the National Autistic Society, we run social groups in Wales that are fully evaluated and have been hugely positive. There is lots of good stuff out there, so it is not about testing or innovation funds; it is about rolling that good stuff out and making sure that it is absolutely everywhere. If you need a vehicle to do that, it is the autism strategy; doing that is quite literally one of the founding purposes of the autism strategy. A Government who take that seriously and think very carefully about how to make that happen would go a long way towards improving the lives of autistic people in this country.
Q199 Baroness Browning: When you say that these things—friendships and so on—have gone, do you think that autistic people sometimes need assistance in forming friendships? I call these things the low-hanging fruit: they are the things that go immediately when there is a squeeze on the money, yet they are often the least expensive to provide and have a much better long-term benefit. Is the low-hanging fruit level where you think the support has gone from?
Tim Nicholls: It is absolutely that. We know that, in the social care system—it is on its knees in this country—the lack of funding at a local level and inappropriate commissioning has led to only the most acute needs being met. We have local authorities that are struggling to meet even their statutory duties under the Care Act, which means, in essence, that there is no money around to provide preventive support. The system cannot get ahead of itself again; it is stuck in a vicious cycle. You might ask, “Why don’t you try innovating to get ahead of this?”, but you are looking at a social care commissioner who is run absolutely ragged.
There is an opportunity coming up with the Casey commission into social care to really think broadly about how we create a social care system that can meet all of the needs of people in society, whatever those might be, against any kind of eligibility threshold. Invest to save is a difficult argument to make in the current economic climate but, in terms of outcomes for individual people, it is exactly the right one.
Dr James Cusack: There are two things around the prevalence of autism—the observed and the diagnosed prevalence. That is how many people are receiving an autism diagnosis at the moment. There are a few myths kicking around about an autism diagnosis at the moment. There is the narrative that has been promoted that autistic people getting an autism diagnosis is some sort of middle-class trend. The data directly contradicts that, so it is really important that we address that point specifically.
We see evidence that the criteria for autism are changing, which is evidence-led. For example, back in the 1990s and early 2000s, we were very poor at identifying autistic women and girls, and we have become much more effective at identifying these types of groups. We are seeing improvements in clinical practice and awareness. Back in the early 2000s, we had a situation in which we had adult clinicians who were just not interested in diagnosing autism. There were some people who just did not see it as their job, so we are seeing massive changes in that respect. Better training is also in place.
Most of all, we are seeing a better public awareness and understanding. Parents are not feeling the same level of shame around seeking an autism assessment. As Jolanta says, that is a really positive thing.
One of things we need to be aware of is being careful of the narrative around autism, not creating a false binary that you are either autistic or not. This is one piece of evidence that we have done a poor job of explaining. We have done it with the intention of trying to validate being autistic and the autistic experience.
However, while you can meet a threshold for an autism diagnosis, we see evidence of a broader autism phenotype in families. There has been genetic research from the early 1990s which has shown this. So, it is possible to demonstrate evidence of autistic traits while not meeting the criteria for an autism diagnosis. We need to think about how we support those people as well because those are people who have needs in the education system but who might not meet the criteria for an autism diagnosis. That is an important part of the conversation on how we design sustainable systems as well.
We have tools that are coming through strengths and needs assessments which can support us with that. There are new models of support being developed in Manchester and Stockport which are very positive in addressing these issues.
Finally, it is important that the Minister is aware that this is not an England or UK-specific issue—we are seeing some similar issues in Sweden and so on, where there is an increase in the number of people being diagnosed. That is because of changing attitudes which are more positive in their approaches around autism. It is about adapting the system to reflect this changing demographic, and the changing understanding of the groups of people we are seeking to serve. If we can manage to do that, it is a significant opportunity. It is a great thing that we are becoming more sensitive to people’s different needs, and it is a great opportunity to support people and get them on the right track in their life
Q200 Lord Hope of Craighead: This is question 5 and there are actually three bits to it. I am going to take the last first, which is the most important one. We have heard that some early identification initiatives are enabling children to receive support without a diagnosis. In practice, that reduces referrals for clinical diagnosis. Should the Government develop approaches for more autistic people to receive support without full clinical diagnosis? That question applies to adults as well as children. If so, how should the opportunities and risks of this change be managed?
Dr James Cusack: There are opportunities here in terms of rethinking how we provide support. Ultimately, what we are trying to do is support people, making sure that people are on the correct trajectory. There is some really interesting work going on, particularly coming out of Manchester and Stockport, and work that has been done in Australia, which shows that if you can support people early enough, you can get them on the right developmental trajectory. That is extremely positive and exciting and something that we should not be scared of, because if we can do that and diagnosis is not necessarily the right step for somebody, then that is a great, positive thing.
Equally, we have to bear in mind that we do not want to get to a situation where we put someone on the right trajectory, we think everything is going great, and then around the age of 12 they need a diagnosis. We just need to be aware that this is a bit of a risk of that approach.
Overall, though, it is a significant opportunity to try and assess and understand as quickly as possible what someone’s needs are, get early preventative support in place, and avoid a situation where we are waiting four years to give somebody support. That feels like we are getting things the wrong way around. If we can have a basic understanding of what someone’s needs are and get that support in place, that is an amazing opportunity, and we are seeing good evidence that this is actually quite an effective approach.
Lord Hope of Craighead: Will this apply to adults as well as children? I can understand it for children particularly, but is it equally with adults?
Dr James Cusack: It is particularly relevant to children, because autism is in effect a developmental condition. It is about making sure that being autistic is no different to not being autistic. Ultimately, what you are trying to do with any child is to get them on the right track developmentally and to create an environment where they can ultimately thrive. That is ultimately what we are trying, particularly in childhood.
I think the same is true in adults. If you are seeing an autistic adult who is really struggling, and you can prevent them getting to a situation where they are experiencing severe mental health issues, that feels really positive. I think the key, though, and another risk which is particularly relevant in the context of adults, is getting to the bottom of why somebody might be facing challenges and not miss diagnosing an issue. That is the only risk with that, but in principle I would be very supportive of any sort of early preventative support models.
Some of the things that Tim has talked about are actually very basic things around psychoeducation, supporting people, placing people in peer support groups and befriending situations. That can be hugely effective in giving people the support that they need. It is not the whole answer, but it is an important part of the equation.
Tim Nicholls: I often find this topic a bit frustrating, if am completely honest—and that is nothing against the question. That is because there is nothing in the legislation that says that support is contingent on a diagnosis—in fact, quite the opposite. In the Children and Families Act, support should be given early on without the need for a diagnosis anyway. Ditto the Care Act: there is no need for an autism diagnosis in order to get support. Actually, what we have here is a system that is failing and is barring people from access without a diagnosis. Then we are using that as a rationale for trying to use tools that may suppress the need to get a diagnosis. It is all a bit cyclical, thinking about things the wrong way around.
However, everything that James just said is absolutely right. Getting in support earlier is to the benefit of absolutely everyone in that situation. My one caveat is that our motivation for providing early support and identification should be providing support, not reducing the number of clinical referrals for a diagnosis. I worry that this is how it is always couched at the moment. Certainly, that was the language that we were hearing from Government Ministers last week.
If we are going to make sure that there are well evidenced early identification tools and roll them out, we need to think really carefully about how we do that. First, it is about making sure that there is that rigour of evaluation behind them. In some areas of the country at the moment, we unfortunately see untested and unevaluated approaches being used, often expressly to try and reduce the number of referrals. Government could do a lot of good here by making sure that evaluation funding is put behind the really rigorous testing of some of these things, because, as James pointed out, we want to make sure that we are not kicking someone’s diagnosis down the road until they are 12, 13 or 14 when their needs may be presenting as much more serious. We now know how many people, especially autistic women and girls, say, “What if I’d been able to access this information earlier?”
We then need to think about how we can make sure that it is actually available in each area. How do we make sure that the right staff are in each area to provide the support, which could be provided earlier on as well?
There is a lot of thinking that needs to go behind this. I worry that, at the moment, it is often talked about as a “quick fix” situation. If there is anything that demonstrates that, it is the fact that, 15 years after the Autism Act, we are still sat here. This is not about quick fixes; this is about social change.
Lord Hope of Craighead: Can we have a quick answer from you, Jolanta?
Jolanta Lasota: My quick answer is that we need a stepped approach. We basically need, for when a child enters school and shows any signs of differences or needs, to have something in schools through which we can identify those needs and start supporting those children early. This does not mean that that person might not need a diagnosis or something more formal at some point, but it makes sense to help people early—and that is across health, education and social care.
We have a very high-stakes system, which means that you have to hit a gong to get any help whatsoever. Even if you need just a small adjustment in a classroom, you have to go to the lengths of getting a diagnosis and an education, health and care plan for someone to stop you going into detention every day. The system does not make sense. We need a system that recognises and values difference, and then responds.
However, my caveat is that I have heard a lot about whether we are triaging those waiting lists heavily enough. My answer to that is that good clinicians are triaging anyway. They will triage and say, “This child is transitioning to secondary. We need to get their diagnosis faster so that they get support”. They are doing that anyway. What we need to be careful not to do is talking about holding people back until they are in crisis because crisis usually means very expensive support, which often leads to very poor outcomes; it is not great for the individual and not very smart, economically speaking.
Lord Hope of Craighead: Do we have time for a contribution from Adam?
The Chair: If you could be quick, Adam, that would be very helpful.
Adam Micklethwaite: I will try to get it into a minute. My answer is that, as part of the next strategy, the Government should commission a serious piece of work on assessment for the long term and treat this not as a cost but as an investment for better outcomes and more cost-effective spending. This would be a critical part of system reform. The purpose would be to explore, agree and then implement a future model of assessment that has the voices of autistic people and their families right at the centre and which is developed with the time and space it needs.
Those people would need to define and develop the recommendations, but some of the principles might include: recognising that increasing diagnostic rates and waiting lists is part of a long-term demographic change to which policy and services need to adapt; maintaining strength and confidence in our assessment model; protecting access to clinical assessment because of the intrinsic value that it provides, which we have just heard about; breaking the false connection between diagnosis and services, as Jolanta said; supporting adjustments across all services and in employment; ensuring that all of the processes that are used to identify both clinical and non-clinical needs are evidence-based, which James talked about; focusing on strengths as well as needs; and adding energy to culture change by increasing understanding and tackling stigma and prejudice. This work could be part of the next autism strategy if the Government decides to walk towards it.
Lord Hope of Craighead: Thank you very much. I suggest I drop the other two parts of that question.
The Chair: Thank you, Lord Hope; I am very grateful. I am going to move on to our final question, which is on the future of the autism strategy; I would like our witnesses to focus on three specific areas. Lord Wigley, I shall pass over to you.
Q201 Lord Wigley: I think we can all agree that understanding of the population of autistic people and their needs has changed rapidly since the Autism Act was passed. I would like to finish by looking forward. What changes might we see in the next 15 years in the population of autistic people, in terms of their needs, research, practice and effective ways to support them? How should a new government autism strategy anticipate future changes?
Dr James Cusack: I have been thinking carefully about this. There are some real risks and some real opportunities here.
First, the fact that we are seeing an observed increase in the number of people receiving a diagnosis is already very positive. What we should see is a generation of autistic children who understand themselves and who are entering the adult world in a better position than the prior generation, so that they can understand themselves, advocate for themselves and, I hope, thrive in society. That would be extremely positive.
What we are also seeing is a generation of children who are, I hope, much more tolerant and understanding of the differences that people experience. The caveat here is that I hope that this will not create a culture where a diagnosis is required to qualify for acceptance in some way: “Why are you behaving differently? You don’t have a diagnosis of something”. We should create a culture that is bigger than that. This is about neurodiversity and understanding that everyone thinks about and understands the world in a different way.
I also think that we are going to see a huge amount of research that gives us really fantastic answers. We are already seeing that in terms of how we can diagnose, support and assess autistic people. We are already seeing really exciting answers come forward around how we can support autistic people into the workplace, support them with things like anxiety, and so on. I think that we are going to see research and evidence provide many of the answers that we need to enable autistic people to thrive in society.
Finally, I believe that we cannot be anxious about these issues. As long as we are positive about, accept and are evidence-led on these issues, we will, I think, see significant opportunities. However, it is all down to whether or not the Government act and embrace these issues over the next few decades. In a context where there are significant challenges in place, there are also significant opportunities for the Government if they take action.
Lord Wigley: It is good to finish on a positive note.
Tim Nicholls: In terms of how the population will change, everything suggests that the population is going to get bigger, older and, probably, more female; that is in terms of the people who are identified. In essence, we are going to see a situation where the population of autistic people that we know about is more reflective of society as a whole. That is a really good thing but, obviously, it is something that the Government and local government will have to figure out as well.
In terms of what a new government strategy should be sure to include, focusing on health inequality is absolutely huge. As we have already said, there is no reason why autistic people should be dying younger.
As the population of autistic people gets older, in terms of there being more identified autistic people who are growing older, that is going to be incredibly important, both because of all of the age-onset reasons as to why someone may struggle with their health and because of the issues that they may have in communicating or in understanding what is coming from the health service.
The second big thing that needs to be tackled in the next autism strategy—this is a slightly system-focused thing—is that we have to figure out how to commission better support. What data do we need at a local level? Which models work? What do you know about your local population of autistic people, other than that they are autistic? Unfortunately, at the moment, too many of the planning tools that are used at a local level use “1 in 100”, which gives you no granularity about what those people look like or what their lives look like. We know much more from the research that has been happening, especially over the past decade, about what those people’s needs might be; that should be used to help inform better commissioning at a local level.
Finally—unfortunately, this is ending not on a positive note but on a slightly annoyed one—the Government have made their job harder for themselves by not implementing fully, before and after the election, the last autism strategy. There were commitments in there for a research action plan and a data strategy. Both of those things would tell us so much more about the autistic population in this country and what their needs are. We would then be able to have a much more intelligent conversation about what should be in a new strategy, because it would be based on really good data and research. If there is anything that can go into the next one to make sure that that happens in 2031, when we look at this again, that would be a great thing.
Jolanta Lasota: I want to throw this question back a bit. How much has changed in reality, if we think about this 20 years ago and think about it in 20 years’ time? We know that early support is really important. We know that children drop out of school because they do not get the support they need. We may not have counted or observed them before, but that has always happened. I know lots of autistic adults who left school when they were six and never went after that. Children are still dropping out of school. They are in home education, part-time placements or alternative provision. Let us talk about that, as it has not changed and we need to address it. If you do not attend school, you are very unlikely to work and very unlikely to be healthy in adulthood.
Secondly, the thing that has not changed at all, which we need to address in this strategy, is joint work in commissioning across education, health, social care and employment. We know that all of those things are so connected, yet they are working in silos.
Thirdly, the thing that I think will not change is that the people who hold a lot of this together are the parents, carers and families around autistic people, who support the system invisibly. The fact that we give them so little support is really important. As we go forward as a society, we are going to be able to afford less and less formal support, and we will rely on carers to do an awful lot more. We need to think about the support that we provide to those people.
Adam Micklethwaite: I will be quick. I think that we are going to see more evidence of even higher scientific standards on the services and supports that work for autistic people, to which James referred. This could be used to create a national commissioning framework for this kind of support so that it is, as Jolanta was saying earlier, brought up to the national level. We could then have confidence that the right things were being commissioned in every area of the country.
The second thing is that I think we will see a continuing shift to a wider approach in looking at neurodevelopmental pathways, so not just autism but all types of neurodivergence. That will be a continuing trend. Clearly, that is a really powerful opportunity to reinforce the shift to a needs-led system, because we should be looking at needs wherever they present.
Thirdly, I think that we will continue—again, as James has said—to understand more about autism and how autistic people are individual in all the ways that we are all individual. We can use this to maintain the energy of culture change and to inform better services and support.
I will end on a positive note. Whatever happens has to be done in partnership between autistic people, their families and all those who have a stake in their lives—everybody who supports and everybody who has knowledge and expertise. The idea at the centre of all of this is that, by understanding others better as social change continues to happen, and by accepting the reality of people’s lives and their lived experience, we really can build a better world. More prosaically, we can improve outcomes while spending money more cost effectively.
Lord Wigley: I thank you all for such considered and focused responses. I appreciate it very much indeed.
The Chair: Thank you, Lord Wigley. Can I just echo your thanks to all of our witnesses? Over the course of the inquiry, you have given us a lot of food for thought, so we are very grateful. We will send a transcript to you for accuracy.
As we bring this meeting and the committee’s programme of oral evidence sessions to a close, I would like to make some concluding remarks. This is the committee’s final public meeting. Over the coming weeks and months, the committee will prepare, agree and publish its final report, which must be agreed by 30 November.
I thank in particular our specialist adviser, Professor Laura Crane, for her expert advice and guidance. I would also like to thank the nearly 70 witnesses from across the country who gave oral evidence to the committee; the approximately 400 individuals and organisations who sent written evidence to the committee; and the dozens of autistic young people and adults, parents, carers, supporters and others with lived experience with whom the committee has engaged in private over the past four months in various forums, including through invaluable visits to St Thomas’ Hospital in Lambeth and the Phoenix School in Tower Hamlets. You have all shared with us powerful evidence that has left a very deep impression on all our members, and we are hugely indebted to you all.
The volume of written evidence that the committee has received is unprecedentedly large for a House of Lords committee. We will be very grateful for your patience while we consider and process this very valuable information. We hope to publish it on our committee website by the time the House returns from the Summer Recess on 1 September.
With that, I draw today’s evidence session—and, indeed the committee’s evidence session programme as a whole—to a close. I now declare that the public meeting is concluded. Thank you.
