Autism Act 2009 Committee
Corrected oral evidence
Monday 10 March 2025
4 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. 2 Heard in Public Questions 7 - 14
Witnesses
I: Professor Martin Knapp, Professor of Health and Social Care Policy, London School of Economics; Dr James Cusack, CEO, Autistica; Jolanta Lasota, CEO, Ambitious about Autism and Chair, Autism Alliance
Professor Martin Knapp, Dr James Cusack and Jolanta Lasota.
Q7 The Chair: Good afternoon. Welcome back to this meeting of the House of Lords Committee on the Autism Act 2009. We are now commencing our second evidence session of the afternoon, and once again I draw attention to members’ interests as published on the committee website.
I would now like to introduce our second panel of witnesses. We are delighted to be joined by Dr James Cusack, CEO of Autistica; Jolanta Lasota, CEO of Ambitious about Autism and chair of the Autism Alliance; and Professor Martin Knapp, professor of health and social care policy at the London School of Economics. You are all very welcome, and thank you very much for taking the time to come to see us today. This is a public evidence session and a written transcript will be taken.
I will now ask the first question and invite you to answer it in turn. Before you answer, could you be very kind and give a brief introduction about who you are? The first question is: what evidence is there about the population of autistic people in England, both diagnosed and undiagnosed, and their demographic characteristics? How is this changing over time and, importantly, what are the key evidence gaps? James, might I start with you?
Dr James Cusack: Hello, everyone, and thank you for having me. I am the chief executive of Autistica. I am also autistic myself. I have a background working in autism research, but also working in policy and directly with autistic people.
On your question, what we have seen is a real change in our understanding, in terms of how prevalent we think autism is over time—from the 1980s when we thought that autism existed in one in 10,000 people, to probably our most up-to-date prevalence studies suggesting that there is one autistic person in 100 people. If you look at the diagnosed prevalence, the numbers suggest that it is even higher than that—so if you look at certain records, you are looking at around three in 100 people receiving an autism diagnosis. We are seeing generational differences, so younger people are more likely to receive a diagnosis, and there are some promising signs that we are getting better at identifying women and girls, girls in particular. What seems to be driving that is an improved understanding of autism—improved awareness, reduced stigma around what autism is and what it can mean and perhaps a change in criteria in how we recognise autism, but also in the thresholds that we use for diagnosing autism. That is to reflect the fact that there are a greater number of people who have needs than we perhaps had previously understood or anticipated.
Jolanta Lasota: I am chief executive of Ambitious about Autism and chair of the Autism Alliance. I am also a mother of a 20 year-old autistic man and so have lived experience of autism.
I am going to talk first a bit about the population of children in schools, because there has been a lot talked about schools. About one in 41 children in English schools is autistic, and that is about an 8% increase since 2020. About 70% are boys and 30% are girls, although we are seeing an increase in the number of girls being identified as autistic but also with EHCPs. We know that over half of children who are autistic in English schools have an education, health and care plan; that is a third of all education, health and care plans. So the highest incidence of education, health and care plans is for the primary need of autism.
Again, 70% of autistic children are in mainstream schools. We should congratulate ourselves on that, but we know that 71% of pupils experience lost learning. Ambitious about Autism’s latest research shows that. I will explain a bit more about that. As an autistic pupil, you are twice as likely to be excluded from school formally as any other pupil, and you are probably 50% more likely to experience informal exclusion. That means being sent home early at lunchtime or told, “You do not attend PE” or “You do not attend school trips”. So you are missing out on a vast amount of education, and that has a huge impact in outcomes for autistic children in schools. It has an impact on mental health. We know that four out of five autistic pupils experience mental health issues, and that is not inevitable; that is part of their experience of being an autistic child in school.
We have already heard that diagnosis levels are going up; we have seen a 135% increase in a decade. In 2023-24, we had 236,000 children under-18 diagnosed, but we still have 130,000 awaiting diagnoses, and half of them are waiting more than 18 months. The impact of that is huge in terms of accessing support both in education and in health and social care. Although we have seen a big increase, we still have a huge backlog in the system.
The good news over the last 10 years is that we are seeing an increase in identification. We should celebrate that. Sometimes we hear negatively about diagnoses increasing et cetera. We should congratulate ourselves as a society that we are spotting children earlier, that we have less stigma, that parents feel more confident asking for help and that teachers are more skilled in spotting those children. That is all progress, but we should also ask ourselves: is there something systemic happening in our system that is causing people to have to wait for these long periods to get a diagnosis in order to get help? That is something to do with the way our school system has changed over the last 10 years.
Professor Martin Knapp: I am professor of health and social policy at the London School of Economics and Political Science. I am also the director of the NIHR, which is the National Institute for Health and Care Research, which is the research bit of DHSC. I am the director of the research programme on social care, and we fund research in children and adult social care. My background is in economics, and my connection to the topic today is that I have done various studies on economic aspects of autism and the support for autistic people and their families. So my expertise is somewhat specialist, and I am looking to my fellow witnesses to provide more information for some of these general things than I can provide.
I do not have much to add about the issues around growing prevalence and growing recognition. In terms of evidence gaps, we still have this almost complete evidence gap in relation to undiagnosed autistic people. We do not know very much about them or their experiences. We do not know much about the services that they do or do not get to access. We have so little information there. We are involved in a study led by Blandine French at Nottingham University, which is surveying to get information from people who are not formally diagnosed but who screen positive for autism on the survey questionnaire. We will finish that very soon, but the preliminary findings suggest quite substantial difficulties in these people’s lives and actually quite substantial use of services, even though they do not have a formal diagnosis. I will perhaps come back to that later. That is one big evidence gap.
A second evidence gap would be that, although we are getting better understanding of people with autism, we still do not have information on the range of contacts they have across different service systems. We still have a very narrow view. The data we have tends generally to be silo by silo, sector by sector, system by system. We do not have that generic view. The same applies, I think, to the support that autistic people get from families and others outside the formal systems. We have very little data there again, so I think those are the gaps that I would identify.
Q8 Baroness Ritchie of Downpatrick: You are very welcome. I have a three-part question—basically one question leading into the next. Professor Knapp referred to the substantial difficulties being experienced currently by autistic people. Therefore, what does the evidence tell us about what autistic people and the people who support them need from the Government and their policy priorities? How is that changing over time and what are the key evidence gaps?
Dr James Cusack: We are learning that there is still a substantial amount of need. These people do not wait for diagnosis because it is a nice thing to do; it is because they have substantial support needs. The fact that we have 200,000 people currently on a waiting list suggests a substantial level of need. But, I guess, speaking to Jolanta’s earlier point, the fact that we have a more accepting understanding of what autism is suggests that this is positive news—we are identifying, or people are beginning to identify in themselves, that they have a range of needs.
We know from the evidence that there are definitely things that we can do now that will positively affect the outcomes of autistic people. Support at the right time can really benefit autistic people and, from Martin’s work, we have evidence that that not only benefits autistic people but is cost effective in terms of its delivery. Failing to act and address these issues around diagnosis and support has a negative effect not only on an autistic person but on our society as well. We have real evidence around that.
When you engage and work with autistic people, a continuing theme that we hear is around mental health, which Jolanta referred to. By mid-childhood, we are seeing quite a high number of autistic children experiencing issues around anxiety. We now have good evidence or theories around why that is and how we can deliver support that will really benefit autistic people, and I think there is a real understanding that we need to be more proactive in supporting people.
We have really good evidence that there are issues with autistic people accessing employment—and good data on that through the Office for National Statistics—that things such as supported employment can be extremely effective for some autistic people; that by making simple adjustments we can get more autistic people into work; and that this is a huge policy opportunity to get more autistic people embedded in the workplace, if we do not prepare autistic people for work just in adulthood but think about how we can do that from childhood.
There is a range of different priorities here. The evidence tells us that the overall theme is that attitudes are changing in a positive way, and we should really embrace that; that we need to take a robust, evidence-led approach to supporting, diagnosing and identifying need; and that we should be positive about how society is changing but have to be honest about the fact that the state has not really caught up yet in delivering support for autistic people and their families. Not only has it not caught up but there is clear evidence to suggest that the UK is significantly behind nations such as Spain and Italy in delivering diagnosis and support. We have a significant gap to bridge, despite the relative strengths we have in other areas.
Jolanta Lasota: We have just heard from James that we have evidence of the long backlog in assessment times for autistic children and young people. We know that that has a huge impact on their and their families’ lives.
I will give an example. I met a mother last week who was told that she would have to wait four years for her child to get an autism diagnosis; in the meantime, her child was excluded from school. She took out a payday loan to get her child privately diagnosed, and that was something she could ill afford. Her motivation was that she wanted her child to learn and she wanted to get back to work. That is in everybody’s interest. That is bringing to life why we have to tackle the autism diagnosis backlog. We have to think creatively about how we identify children’s needs and meet them without needing immediately formal diagnosis, so that it is not an either/or. We should be able to recognise children who have needs as they enter the school system and be able to meet those needs. Many of these parents are waiting for a diagnosis to get simple things such as extra time to do work or to get laptops. These are not expensive adjustments. We need to think about how we front-load the school system to provide that support without people having to wait for long queues.
That brings me to the next bit: we know that the education system is not fit for purpose at the moment for autistic children and young people. We know that they experience exclusion, bullying, mental health issues and poor outcomes, and that that has a lifelong impact, as we know, on employment and other parts of their lives. We have to really think about how we systemically change the education system to embrace children and think about where their strengths are, how we make the most of their interests and how we enable them to thrive beyond school and not fall off that cliff edge, as we see so often. That is a real opportunity. We need to stop thinking about SEND as a burden, as we hear in the news, and start thinking about it as an opportunity. Autistic children, young people and adults have a huge amount to offer our society, so investing early in our education system in assessment unlocks some of those talents later in life and reduces burdens on other parts of the system.
In employment, we have really good evidence around supporting autistic people into work. At Ambitious about Autism, we have been supporting people from education to employment, so we know what works. We have seen a 70% success rate of people who have gone through our scheme to enable them to get into employment. We need to really think about how we deploy that. We also know that generic support does not always work for them, so it is worth thinking about layering that support. Of course, we need universal support for people to get into employment, but we need to think about what we will do when that does not work: are we going to leave them unemployed or deploy something more specialist to help them into employment?
Last of all, we know we have over 2,000 people in in-patient units. That is the tip of the iceberg, and it is telling us that our local community-based system is not working. You end up in hospital when you have been moved up and up the system, not because your needs are particularly complex but because the system is not able to flex to meet your needs. That is a lose-lose for everyone. We heard last week about a person who spent 45 years in an in-patient unit, which cost £20,000 a week. We really need to think about the impact on individuals in our system. We have lots of evidence about what needs to change and how to make that change; really, this is about us catching up with what we know and doing something about it.
Professor Martin Knapp: I am reflecting on the Government’s five missions, and it seems to me that addressing the individual and diverse needs of autistic people would help at least three of those. One is the growth mission. As we just heard, getting autistic people into work and helping them to work in open employment would contribute to that. Secondly, addressing the health needs of autistic people would contribute to the health mission. A third government mission is opportunities, one of which is addressing inequalities, and we have heard lots of evidence already about those inequalities that are experienced.
I think there is a consistency between the government missions and the needs of the autistic community, but there is also an inherent contradiction. What we are seeing now in the health context is that NHS England is prioritising bringing down waiting lists but, in doing that, the danger is that it then deprioritises supporting autistic people in getting their health needs identified and responded to, because the quicker wins are with the general population. There is an opportunity for the Government to embrace the needs and preferences of autistic people, but I worry that the delivery of those missions may be running contrary to their needs.
Q9 Baroness Browning: I have to declare my interest first. I am a vice-president of the National Autistic Society and co-chair on the All-Party Parliamentary Group on Autism, and I served on the 2009 Act when it went through the House of Commons. How effective was the Government’s approach when they set the policy objectives for the current autism strategy, 2021 to 2026, and how should the current Government approach this differently? I start with Professor Knapp, not least because, of the three strategies we have seen, including the latest one, employment has occurred over and over again. Can you tell us what a good employment policy for autistic people would look like?
Professor Martin Knapp: First it would recognise that the great majority of autistic people want to be employed, as in the population in general—I do not think there is a difference there. Then it should recognise that, as we know, you cannot group autistic people too much: people have individual needs, preferences and aspirations for their careers. Then it is about looking to models of support that would enable people to find the jobs that they want and to be supported in those jobs. It should also support the employers. Jolanta has already mentioned a scheme that her organisation runs. I can think of individual placement and support, which is another very similar type of approach. It is about understanding what that individual needs and then supporting them and the employer, and not setting out on a time-limited basis. That will be very successful.
Similarly, going back one step, it should be about supporting autistic children, adolescents and young people through the education system so that their aspirations are identified and supported. I am reflecting on a PhD at LSE a few years ago that looked at how successive generations of disabled people have been supported to hold better aspirations for their future lives, particularly their employment. That was a very important change. What stayed the same was that those aspirations were completely dashed. It is about supporting those aspirations and then supporting people into employment settings.
Baroness Browning: Jolanta, where have the Government gone wrong in getting autistic people into employment? How is Ambitious About Autism managing to do it?
Jolanta Lasota: The most important thing is to recognise that entering the workplace is a two-way process. You have to work with the young person over a prolonged period to prepare them for the workplace. So this is not about waiting for someone to leave education and finding out that they are not ready for employment; this is about building that into the national curriculum, ensuring that they are being well prepared for employment throughout the education system and giving them experiences of work while they are at school. Many autistic young people find it difficult to generalise skills from an education situation into employment, so you have to provide opportunities for work experience while they are in education.
You also need to ensure that employers are ready for them and that is an important piece of work—not only providing training for employers but giving them experience of meeting autistic people through internships and work experience, which starts to build their confidence. We sometimes forget that employers are just human beings and, if they have never had contact with an autistic person because they have never been to school with an autistic person or have never worked with an autistic person, it can feel quite daunting for them. Actually, through our schemes, we found that all managers feel hugely more confident once they have gone through an internship or work experience, and they also feel that they are better managers overall. It benefits all employers not just to support autistic people into work but to become better employers, so we know that, when you take this dual approach, it works.
We also need the Government to invest in scaling and incentivising this nationally. We know that the employers who come forward at the moment tend to have a connection or to be searching for a specific talent. You see lots of companies that are looking for IT et cetera entering these schemes, but we need this to be wholesale, so we need some incentive to get employers to engage, particularly with young people who have more complex needs, who will need that extra support to come into the workplace.
Baroness Browning: James, do you think the Government can get this right with the strategy and when they set these policy priorities?
Dr James Cusack: Yes. The autism strategy and its themes are about right, but they are not objectives, as you suggest. The objectives are not really clear enough. We have the employment rate, which is a quantitative number, so could we have objectives that are committed to changing that number? I do not see any reason why not.
We have just done a review into autism in employment with Robert Buckland and the previous Government, and then we see a press release in January saying that there is going to be another review on autism in employment, as if we did not just do one a year ago. So there is a lack of coherence there, which is quite frustrating from a charity’s perspective, because we have put in a lot of work and submitted evidence to different bodies to support DWP with that. Then, in a very disconnected way, we have to produce another review as if we had not just done one a year ago. That is an example of where we could be more coherent.
We are creating research-based tools on how employers can change their practice to be more neurodiversity friendly. That feels like a very easy win, because it is about not just improving our understanding of autism but the need to improve literacy of neurodiversity in the workforce and to understand that everyone thinks about and understands the world in a different way. If we want to create high-performing organisations that support growth in our economy, we need to understand that people think about and understand the world in a different way. There is a fundamentally quite surprisingly poor awareness and level of understanding of this among employers. This fits into a wider agenda.
Fitting these objectives into the autism strategy is about connecting them to something that is truly measurable, but also—and I am sure we will get on to this later—having a serious underpinning plan and understanding of how we are going to achieve something. We will focus on a given area not because it is nice to do, but because we can change something, achieve something and actually hit some objectives here. I do not think our autism strategy has got to that next level, to date, but, if we can get to it, it will be a serious opportunity because, across all these areas, we now have some exciting solutions that would benefit autistic people, their families and society, and that are actually implementable.
Q10 Lord Wigley: I need to declare a former interest: I was vice-president of the Local Government Association until last April and was vice-president of Mencap until then as well. In many ways, my question follows directly from some of the points on which you were touching then. We have asked about the Government’s approach to setting policy objectives and are now looking at how effectively they have, so far, implemented the autism strategy for 2021 to 2026. How should the Government do this differently over the rest of the period to be more effective?
Dr James Cusack: As I said in a previous conversation, in effect, the Government have a strategy but not a plan when it comes to autism. That is where we are: we have a set of themes and strategic priorities, but there is nothing of any substance underpinning them. Anyone who is running an organisation or who has been in a situation where they are responsible for something knows that you do not get very far with just a strategy and not a plan underpinning it. This is very true in the context of autism. This has been a real, serious failure and there needs to be accountability for it.
Autism charities have been alongside autistic people and their families, and we have basically been making this point to successive Ministers since the autism strategy was published. We engaged with Minister Caulfield, and they suggested that they would be concentrating only on the statutory guidance rather than implementing a plan around the autism strategy. You cannot do one thing at a time, within an organisation; you should be doing multiple things at once. We engaged with Minister Kinnock, and he said that he was in listening mode. Again, this is fine but, if you are in a leadership position, you have to be in listening mode and doing mode.
The uncomfortable truth for us is that, when we engage at the highest level within government, we see a real lack of willingness to be accountable for this and for the delivery of a plan. When we engage with civil servants, there is a real desire to get going here, but there is a lack of emphasis on this and a lack of accountability for failing to deliver on it. That leaves us with a strategy that is broadly heading in the right direction, but with a lack of underpinning action.
I have to be transparent and honest with you that the outcome of the failure to deliver this autism strategy is that autistic people will continue to experience real and serious inequalities in their health, their mental health, and their access to work and support. If we treated anyone else in the population in the way that we treat autistic people, and we saw Ministers not supporting people in this way, we would see it as appalling. That is what this is.
Lord Wigley: Before you move on, could I add an addendum? If you were the Minister, how would you do this cost effectively?
Dr James Cusack: The reality is that the failure to address this costs the taxpayer money every day. We are not putting people on the right trajectory in life. You could say, “We’ll save money by not sending children to school any more”. You would save money immediately, but you would not support the next generation, as they would not have the skills to participate in work. That is how we treat autistic people, we act as if doing nothing is the right approach. Actually, if the Government were serious about this, genuinely engaged in these issues and supported people in a timely way, a proportion of autistic people would be in a position to thrive. The interventions and supports that are available for autistic people are about supporting families to be the most effective unit that they can be. That enables autistic children to thrive at schools, to be in the best possible position to go on and achieve qualifications, and to participate in the workforce. That has clear economic benefits. Several studies have demonstrated that to be the case.
It also allows families to participate in work. Look at free school meals data; an enormous proportion of autistic children are on free school meals. Why is that? Potentially one of the reasons is that their parents cannot access work, because they are supporting their child. That all affects economic growth.
Jolanta Lasota: The 2021 strategy included children, which was a great thing, because we cannot effect change for adults without effecting change for children, so that was really helpful. However, the autism strategy was a collection of aspirations without real outcome measures, and we did not nail ourselves to achieving strategic outcomes across government for autistic people. We did not actually consider how a cross-government strategy can effect real change, so we have not seen real change over these years. We have seen lots of reporting on activities but, as James said, I would probably be fired by my board if I had reported on lots of activities that I had undertaken without reporting on the outcomes that I had achieved from them. It is about holding all of us to account on real change for autistic people, their families and society.
We need a strategy that is across government and systemic. It should be trying not to add on to a system, but to transform systems to be autism friendly and autism confident. It should have some real measures behind it, so that we can hold ourselves to account, whether on assessment times, waiting times, outcomes in schools or employment. We really need accountability across the system. I see enthusiastic people—civil servants—who want to make things happen, but there is no real accountability in the system.
Ultimately, we need to see the benefits of this. We are not seeing the benefits of undertaking an autism strategy and implementing it fully. We need to think about how we are going to unlock talent, how we are going to improve employment and how we are going to reduce challenges in the mental health system and the primary health system. We will get real buy-in when people start to see the benefits of what autistic people have to offer and when we also unlock the challenges for their families.
We know from our latest research that at least half of parents said that they had either given up their job or reduced their working hours to try to support their child in the education system, because the education system was failing them. Those people would have been or could have been working: they are not giving up their jobs because their child is autistic; they are giving up their jobs because the system cannot handle the fact that their child is autistic.
Lord Wigley: Professor, is this achievable and assessable?
Professor Martin Knapp: I think it is. I will reflect on the economic side, which has been picked up by other colleagues. In the UK—and it is the same in other countries—we spend a lot of money supporting autistic people and their families, but a lot of that money is misdirected and inefficiently used. I am going to use an allusion. I trained as an economist and I am going to use something that is not economic theory, but I think there is a difference between good costs and bad costs. In a lot of the expenditure at the moment, we see what I would call bad costs. It is money that is being used to respond to crises, which comes in too late to support people when things have got to be escalated and have become very complicated.
We need to change that balance of spending and spend more on the good costs: intervening early, preventing mental health problems from developing, intervening to support people early in life and putting in the right supports for young people in schools to help them prepare for employment. We have heard about those already. I think we can move that balance away from spending lots of money on responding to crises. Of course we need to respond to those crises but, if we can change that balance, and do more early in people’s lives and experiences, it would be a much better use of resources.
I am happy to go into more detail if you want to, but we did some work last year, which was funded by the Autism Alliance, where we tried to find evidence on cost-effective supports or service models for autistic people and their families. We scoured the international literature and found 10 areas. I will not go through the details of them; they map on to many of the needs and wants of people in the autistic community, but they do not address all the big issues that face those people’s lives.
So we have some evidence of things that work. The challenge is that there are many barriers to Government and other agencies to put in the right resources to make sure that those things happen. Again, it is about having a strategy but not having an implemented plan. The same applies to these cost-effective interventions: we have those things and know what they are; we are just not delivering them at the scale we need to.
Lord Wigley: We are under time constraints here but, if there is more information available, we would be glad to hear from you.
The Chair: That would be very helpful. Professor Knapp, perhaps you could write to us with some further detail on that. The committee would be very interested in hearing more about that area.
Q11 Baroness Goudie: Some of the points in my questions have been answered. When the witnesses send in some further information on improving support for autistic people, because you covered that, including making services more available and based on needs, perhaps you could also talk about the length of time it takes and how people have had to club together to get assessments. You mentioned payday loans and there are others that we know about. You have answered a lot of the question, but could you add a bit more, because it would save a little time?
The Chair: Would any of the witnesses like to add to that question, because we do have a bit of time if you would like to elaborate?
Dr James Cusack: We need a proper system to diagnose and support people and a proper framework to ensure that people who are receiving a diagnosis are getting a good-quality diagnosis. At the moment, we have guidance that cannot be implemented and we need a serious plan to understand who needs a diagnosis and who needs their needs identified. Some of the work that is going on in Stockport, Manchester and other areas is really innovative and can be rolled out across the country. We know that there is good evidence that those programmes reduce the waiting time for a diagnosis.
Again speaking to my earlier point, there are some really interesting solutions out there. There are lots of innovative things that we can do: big employers are now looking at delivering autism diagnoses as part of their insurance policies. There are all sorts of different things that we can do to help address the backlog that autistic people and their families are experiencing. I am really happy to send in that information as well.
One area that is looking very positive is the Department for Education, which is looking at things like neuroprofiling, and assessing strengths and needs. That is a really exciting area but, again, we need to make sure that what we are doing is evidence based.
Q12 Lord Hope of Craighead: My question is really about the statutory guidance and whether it is working. I will just read it to you: how effectively do the Government support the public sector, including local authorities and the NHS, to plan services for autistic people? How could this be made more effective? James, perhaps you could begin to answer.
Dr James Cusack: Well, Jolanta is on the front line of it more than I am. She is delivering services. But I will say that Minister Caulfield, in the previous Government, promised to update the statutory guidance. She said that this was their priority, but they failed to update it and roll it out. That was their one objective and they did not complete it. Perhaps that reflects where we are in terms of how the statutory guidance was rolled out. It is probably easier for Jolanta to speak to the specifics of dealing with implementation at the local level.
Jolanta Lasota: The challenges are threefold. First, we need to recognise that the statutory guidance is linked to lots of other legislation that has not been well funded or supported. One example is from the children’s area: we have the Children and Families Act, on which we will hear lots of debate in the next few weeks, with the Government thinking about transformations there. The failure has really been around recognising the population growth and the resources behind that. We have not strategically thought about the scale of population growth that we are going to see and the different needs of that population to gear up our local authorities and health system towards supporting it. We are now seeing a system that is crumbling in all areas, because we have not planned for that strategically. We also have a real problem with accountability. There has been very little accountability around the delivery of any guidance. We have left accountability to parents, who have to fight in tribunal or in making complaints to the Local Authority Ombudsman. We have left it to those people who are already suffering from poor support to have to fight for accountability individually.
We need better accountability. Whatever we do with the strategy, we really need to think about who will be that voice that is accountable for the delivery of that strategy across Government. We heard in the earlier session that, in Scotland, we have an accountability around autism and learning disability and we do in Northern Ireland. Of course, accountability cannot be tied up in one individual but has been left to individuals and organisations like ours, which try to hold large departments to account for things that have not been delivered. Therefore, we are not really seeing accountability.
We also need to think, in all government policy, about how to systemically change attitudes towards autistic people and people with disabilities. We are never going to change a system by constantly having to layer legislation on top of existing legislation. When we come up with a new Act or anything, we need really to think about how it affects autistic people and others, so that we are building that from the start and it is systemic, not layered upon a system that is failing.
Professor Martin Knapp: I will just reflect on what we need. I completely agree with what we have just been hearing. I think it is for the Government to set this aspiration or strategy to invest for the long term. Yes, we can do things that meet the needs and preferences of autistic people and families quite quickly, in some respects, but many of the pay-offs—if I may use that term—do not appear immediately, yet government decision-making is often driven by what is possible, what is feasible and what is going to return a benefit in the short term. It is the culture of spending reviews and so on. In this area particularly, we need to see a longer-term commitment across different sectors. It is about early years provision, schools, health and social care, workplaces and welfare benefits; a whole range of different sectors need to be committing that investment, both short and long term, to meet needs and support preferences.
I will just pick up on one more thing, which is that there is a kind of inherent disincentive in the system, which I often call the diagonal accounting barrier. Why should I spend my money, when the main pay-offs are going to be in somebody else’s budget, many years into the future? You have this double barrier that people in public sector agencies often face. We need to think about a co-ordinated strategy from government to support local and other agencies to invest long, to invest in a co-ordinated way, and to be patient for those outcomes to arrive.
Q13 Baroness Pitkeathley: My question is partly about charities and how they support autistic people. Of course, we have wonderful examples here of charities that support autistic people. Could you think more broadly about other charities and the commercial sector, and the support that they provide? How could the Government better support them, in turn, to do this more effectively?
Dr James Cusack: First, there are definitely opportunities to think about how services are delivered nationally. For things like assessment and diagnosis, if the state is struggling to meet demand, what are the opportunities to deliver these services in cost-effective and high-quality ways? We should not rule out anything that identifies some of the challenges that we are currently experiencing.
A key thing in how the Government engage with charities—the Government have talked about seeing the charity sector as partners—is understanding that charities can support not just with delivery but with ideas formation and in developing ideas that are actually implementable. That is key to getting this right and trying to embed lived experience in some of the thinking. There are obviously real opportunities for innovation around mental health services, in how we are supporting autistic people in that way and in employment. We use a range of different tools across the charity sector, which could support more autistic people into work.
The final part relates to an interest that Autistica specifically has around research. In the current autism strategy, we had a commitment to a research action plan and that has not happened. A real barrier to delivering progress for autistic people right now is that we are not taking as structured an approach as we could to collecting evidence, despite having real relative strengths in how research is conducted in the UK and in the expertise that we have. That could be a real driver of progress in the autism strategy, if we begin to find different, effective ways of doing things—such as the earlier example of Stockport and Manchester, and diagnosis and assessments. There are all sorts of different ways that the Government could be working with charities to drive forward innovation as well.
Baroness Pitkeathley: Do you have any examples from the commercial sector?
Jolanta Lasota: Charities such as Ambitious about Autism really do three things. We have existed to do the things that the state does not do. That is what we are there for. We have brought the voices of autistic children and young people and their families to decision-makers to help people to make better decisions and understand their needs better. We innovate and we create solutions. Ambitious about Autism was formed by families who had children who did not have a school place, so it created a school where their children could go. Charities are often able to take risks that the state cannot and to take ideas from around the world and start to think differently. The other thing that we are good at is producing evidence and helping people to get much clearer evidence to make those decisions.
The commercial sector has certainly seen companies change their attitudes towards employing autistic people. I have seen employers really taking strides in that direction and creating an evidence base for others in the industry. For example, we have worked to create a body for the insurance industry that supports neurodiversity and it has helped to create training across the sector. It has increased expectations and offers work experience. That has really galvanised the whole sector to do more and we are trying to help different sectors to replicate that.
We can see that there is an appetite in employers; the appetite is for talent, as they have a shortage of talent, but they are not charities. Once we ignite their appetite, we can see that there will be real benefits and that they will really help the Government to achieve some scale in this area.
Also, we have seen that companies want to support their employees. Quite often, they are innovating in helping families who are working and have disabled children, by providing that support through the workplace. We know that employers want to do more. They need guidance and help, and we need to help them to scale some of this.
Professor Martin Knapp: There are hundreds, probably thousands, of small, local charities across the country that provide support to autistic people and families. I am chair of trustees of a tiny little charity in Maidstone in Kent. We survive on a shoestring; our annual turnover is about £20,000. We deliver counselling services to individuals and families who are either on a very long waiting list for statutory services or who do not reach the threshold of need for statutory services but—Maidstone is a town with a lot of deprivation—cannot afford to buy private counselling.
Many of the charities that are providing services of this kind are not necessarily labelled as autism charities, but they do provide a huge amount of support. Over the course of our existence, which is about 25 years now, we have seen a growing proportion of people who come to us for services who identify autism as a factor in their need for support. We should do more to support those charities. There are umbrella organisations in the charitable sector, such as NCVO, which does a wonderful job, but I can think of two such charities in Kent that have gone under in the last few years, yet they are providing very important under-the-radar support to autistic people.
Q14 The Chair: I will just come back to something that you have just raised and that Jolanta mentioned on neurodiversity. Could the witnesses just say what the advantages or limitations are of framing policies that support autistic people, and include that wider neurodiversity conversation and paradigm that is happening at the moment? While you are answering that, if you wanted to see one recommendation from this committee—or even two—to appear in a report I would be very interested to hear what key recommendations you would like to see, as we start to think through some of these challenges.
Dr James Cusack: It is always important to get the language right with these things, as well. Autistica thinks about this through three lenses. The neurodiversity lens acknowledges that everyone thinks about and understands the world in a different way. Then there is a neurodevelopmental conditions or neurodivergence lens, which is about whether the issue is about neurodevelopmental conditions. Then there is the autism lens.
Each lens has a varying degree of relevance to the different issues that Autistica looks at. Autism and anxiety has quite autism-specific theories around it, so it is important to see it through an autism lens, whereas diagnosis may take more of a neurodevelopmental conditions approach and something like employment might require more of a neurodiversity approach.
In summary, I am trying to say that the policy area dictates the lens through which we look at it. There is no right answer; it is simply a case of thinking about what the area is and the right lens to look through. It is something that we have debated a lot at Autistica because, as you suggest, it is a really important area.
In terms of what needs to happen next, it again depends on what lens you are looking through. If it was something to improve autistic people’s lives, I think we would need to start identifying and supporting people more quickly. But if it was a specific structural change, it would be around whether we can take the strategy and turn it into something actionable, which is a theme that you have heard about from all the witnesses, including the earlier witnesses. That would be backed up by a serious approach to research and evidence as well.
Jolanta Lasota: We need to recognise that the majority of autistic children will have a co-occurring condition. We need to understand that they are individuals and that they have individual talents and needs, and they may not be just autism. It is important that, when we train teachers and staff, they recognise that, so that autism does not overshadow that child such that nothing else is recognised.
It is important that we do not dilute policies to be so generic that we are not meeting the needs of autistic children and young people. We can see in the system that autistic children and young people are really struggling in schools and then in employment. If we ignore that, there is a risk that we create something so generic, easy to implement and cheap to implement that we do not address that issue.
I had five priorities, so I will have to choose very carefully. At the heart of that I would place a refreshed autism strategy that really thinks about systemic change, not change that tries to layer itself upon a system that is failing but that tries to tackle the system at its core. It should recognise that that is going to benefit not only autistic people but everybody else. I always say that autistic people are like canaries in the coal mine: the things that they struggle with are things that other people struggle with too, but they will notice first.
Professor Martin Knapp: I do not have much to add. I was going to talk about diagnostic overshadowing, exactly as Jolanta mentioned. I will just go with one priority, which is to see autism as a whole-of-society responsibility.
The Chair: On that note, I thank our three witnesses very much indeed for, again, a really interesting, informative and thought-provoking session. I am very grateful for all the ideas and particularly to you, for all the support that you give the autistic community, which is incredibly valuable.
I have to say that we will be sending a transcript to you to check for accuracy. With that, I will draw this discussion to a close. Thank you.