Autism Act 2009 Committee 

Corrected oral evidence

Monday 28 April 2025

4 pm

Watch the meeting 

Members present: Baroness Rock (The Chair); Baroness Browning; Lord Crisp; Lord Elliott of Mickle Fell; Baroness Goudie; Baroness Hodgson of Abinger; Lord Hope of Craighead; Baroness Pitkeathley; Baroness Ritchie of Downpatrick; Lord Scriven; Lord Wigley.

Evidence Session No. 10              Heard in Public              Questions 67 - 73

Witnesses

I:  Professor Karen Guldberg, Professor of Autism Studies, University of Birmingham and Chair, Neurodivergence Task and Finish Group, Department for Education (DfE); Professor Sue Fletcher-Watson, Professor of Developmental Psychology, University of Edinburgh; Dr Jonathan Vincent, Lecturer in Higher Education, Lancaster University.

Examination of witnesses

Professor Karen Guldberg, Professor Sue Fletcher-Watson and Dr Jonathan Vincent.

Q67            The Chair:​ Good afternoon and welcome back to this meeting of the House of Lords Autism Act 2009 Committee. We are now commencing our second evidence session of the afternoon, in which we are exploring key barriers to supporting autistic children and young people with access to education and transitions to adulthood and to discuss how those barriers can be overcome.

I introduce our second panel of witnesses. There are Professor Sue Fletcher-Watson, professor of developmental psychology at the University of Edinburgh, and Dr Jonathan Vincent, lecturer in higher education at Lancaster University, both of whom are joining us in person. We are also joined remotely by Professor Karen Guldberg, professor of autism studies at the University of Birmingham and chair of the Neurodivergence Task and Finish Group for the Department for Education. You are all very welcome, and thank you for coming.

This is a public evidence session, and a written transcript will be taken. I once again draw attention to members’ interests as published on the committee website. Professor Laura Crane, professor of autism studies at the University of Birmingham and director of the Autism Centre for Education and Research, is the committee’s specialist adviser and is present at today’s meeting. Laura’s interests are published on the committee’s website. For this evidence session, she has asked me to draw attention to how she works with the University of Birmingham School of Education, where one of our witnesses, Professor Karen Guldberg, is the head of school. As head of the school of education, Professor Guldberg is therefore Laura’s line manager.

Having said all that, I now ask Lord Scriven to ask the first question.

​​Lord Scriven:​ Thank you very much for coming to share your thoughts with us today. What is the evidence on the numbers and characteristics of autistic children and young people, the support that they need throughout their educational journeys and how far they have access to the support that they need? How is this changing over time, and what are the main reasons for that change over time?

Professor Sue Fletcher-Watson: In terms of prevalence statistics and records of autistic pupils in schools, the most recent reliable ones that I can find vary between about 1.5% to 3% of pupils in schools, depending on the UK nation. That is in mainstream schools; in specialist schools, about 25% of pupils are considered to be on the autism spectrum. My expertise is much more in relation to mainstream schools, so I am not going to say much more about special education, unless the panel push me.

That means that, in the average primary school in the UK, that would be about six autistic pupils and, in the average secondary school, it would be about 20 autistic pupils. In terms of their support needs, the four areas that I have written down in my notes are, first, around sensory profiles, so sensory experiences in the physical spaces of school, and in relation to things like uniform and noise. Another big area of support need is in relation to social and communication norms, expectations of typical ways of expressing yourself and typical responses to given scenarios, as well as typical ways of building and having friendships and typical friendship needs. Those can all be very different for autistic young people, and that is a big area in which autistic young people are judged quite harshly for those differences.

Autistic people in school have significant mental health needs, which are specifically connected to the school environment and school experience—so anxiety generated specifically in relation to school attendance and school experiences, including bullying and victimisation at school and loneliness. These are really common.

The last area is co-occurring needs. Lots of autistic young people will have additional learning difficulties such as dyspraxia and dyslexia. They may fit an ADHD profile; they may or may not have a diagnosis. They may have executive function difficulties and working memory problems. I can attempt to define any of those, if the panel would like me to.

That is my headline. You also asked about change over time. My perception—and I shall be interested to hear what the other witnesses say on this—is that we seem to have shifted from a model of inclusion where the default school environment should cater to maybe 80% to 90% of pupils, and 10% or 20% of pupils need some kind of adjustment to that environment. It feels like the constraints and expectations placed on schools, teachers and curriculum have got narrower and narrower, such that the school is catering to more like 20% of pupils where 80% need some kind of adjustment. That is about autistic and other neurodivergent pupils and young people with English as an additional language, care-experienced young people and people with trauma in their background—all sorts of young people, of whom autistic young people are just one subgroup.

A big part of the change over time is a narrowing of expectations within our mainstream school environments, which has negatively impacted the experience of many autistic young people.

Professor Karen Guldberg: I agree with a lot of what Sue said there. Just to add to the figure about prevalence in education­—for England, the figures within DfE for most recent years are almost 2% of children and young people in schools having an autism diagnosis, and the research indicates that around three-quarters have co-occurrence with other differences. Sue touched on that.

It is important to make the point here that, when you look at September 2023, nearly 158,000 people were waiting for a diagnosis of autism and one in four had waited for over three years. That, of course, skews the percentage figures and prevalence that we potentially have in our schools. Between 70% and 72% of autistic children and young people are in mainstream schools.

Sue touched really clearly on some of the individual support needs that children and young people have. I will add three key points to Sue’s points. First, at a broader level and a system level within the education system, a recognition of need is important. We need timely recognition of need, and early support needs to be needs-led within education. All the issues Sue outlined are really important aspects of need. We have a job to do in education to become better at this, to recognise that not all children and young people will reach clinical thresholds but will still need support in schools and that we cannot rely on clinical diagnosis for determining early need and support in education. Too many children are having to wait to have their needs met and to have approaches and strategies put in place.

Sue touched on the issue of our education system not being inclusive enough as it is. Inclusive culture is absolutely crucial for autistic children and young people. We will come to the figures later, but understanding and acceptance of their autism or neurodiversity and of their needs and interests, and a school culture that welcomes diversity and difference, is absolutely crucial. Alongside that is the importance of a commitment to adaptation and reasonable adjustments.

All the literature indicates that what really matters is to have educators who can build relationships and who see and understand the child and young person. A lot of the feedback in so many different research projects and reports is that autistic children and young people are not happy. In a quite recent National Autistic Society survey, only 5.7% said they felt excited about going to school or enjoying it, only 8% said they get the support they need, and only 2% were confident in asking for support. So there are some barriers in terms of both the structural and the cultural, which I am sure we will come back to. Autistic ­children and young people are saying that they are not happy, and three in four parents say that schools are not meeting needs—that has real consequences.

I was not sure whether the question about changing over time and the main reasons for changing over time was to do with how our understanding of autism or our education system has changed over time or about how it had changed for those children and young people. There are quite different issues in early years, primary and secondary­—I initially interpreted the question as being about that. That comes back to the importance of getting the support that children need early and in a timely fashion, because that shapes access to learning and participation at an older age. I want to highlight here that secondary schools are particularly challenging for those children and young people—the physical nature of the building, the organisational challenges and the culture of many schools. A clarification on that last part of the question would be really helpful, because I might have misunderstood it.

Lord Scriven:  You answered that quite well, Karen. Your interpretation and view on that was helpful. Jonathan, is there anything you wish to add?

Dr Jonathan Vincent: I will just add a couple of points. My research focuses predominantly on life course transitions, including into adulthood. Some of my research is with autistic students and graduates at university. Although in school the population is somewhere between 1.8% to 2.5%, based on the data we have from universities on graduate outcomes, we know that that population is about 1%. That is from students sharing that information with their universities and with us through the Graduate Outcomes survey. However, it is likely, in both schools and universities, that that is a gross underestimation of the population, based on the issues we have mentioned around protracted diagnostic processes and misdiagnosis, particularly among women and girls. That is an important factor here in the characteristics.

We know, both from my own study in higher education but also in schools, from the data that Sue referenced, that the rates are still 4:1, boys to girls. We are seeing an overrepresentation of boys, and we see that in terms of access to support as well. Boys are five times more likely to have an EHCP and four times more likely to have school support, compared to girls. We know that there are gaps in support that are specifically gendered, which is partly to do with the way in which our diagnostic tools work and the extent to which girls feel able to unmask in that process.

A final point on the characteristics is that we know there is an association between autism and social disadvantage and ethnicity. Some 35% of autistic pupils in schools are on free school meals or are socially disadvantaged, compared to just 25% without a SEND. There is an intersectional picture in relation to autistic pupils, which is quite important to keep in mind.

Q68            Baroness Goudie: What impact, if any, has the Government’s autistic strategy for 2021 to 2026 had on improving support for autistic children and young people? Why has the strategy been effective or not effective? What are the consequences of failing to improve support for autistic children and young people?

Dr Jonathan Vincent: I will start towards the end. Would it make more sense to start with someone else and I will get to adults?

The Chair:  I think we can start with adults; that gets forgotten.

Dr Jonathan Vincent: Absolutely. One of the big strengths of the Autism Act was its focus on adults. The strategies that followed were equally very important and significant in doing that. One strength of the last strategy was its focus on transitions to adulthood in particular. I know that there is a question about that, so I will not speak too much about that. There is an emphasis on recognising individuals across the life course and the diverse trajectories they often have in collaboration with, for example, the Children and Families Act, which recognised that we need to think up to 25, because 18 is not the point at which people simply become an adult and we leave them.

The strategy’s emphasis on engaging with autistic young people’s and adults’ voices in this process­—listening to what they want in relation to the transition to adulthood—has been hugely important, as has the way in which we have been able to use that to change things within schools and further education settings to put in place bespoke transition support programmes, which have been very effective.

Another area where there has been strength is in higher education. Again, that is hugely important. The data can be a little bit misleading but, just to give you a sense, in 2014, based on the Higher Education Statistics Agency data, only 6,845 students declared that they were autistic. In the last year’s data, it was 22,560. So, we have seen a 230% increase in the number of people sharing that information, and that does not count the 90,000 additional people who have two or more conditions. We know that many do.

That is a positive thing; that is part of the strategy. It spoke to the ambition we ought to have for autistic young people to be able to access higher education and realise their potential. At the same time, we know there is still a lot of work to do in that context. There is still a lack of understanding among staff and peers. There are still contexts and environments, and campuses that are inaccessible. There is a lack of flexibility and personalised adjustments, which remain issues for higher education to consider. Going forward, this is an area that we want to continue to focus on.

Professor Sue Fletcher-Watson: My feeling is that the biggest impact that the autism strategy has had has been around raising awareness. In terms of young people’s support in school, that has been a bit of a double-edged sword. There are obvious huge benefits to creating a culture and environment where people are talking about autism, and they feel confident to be out as an autistic person and talk about their diagnosis. Parents are maybe more confident sharing their diagnosis with their child whereas, if you went back 10 or 20 years, more parents would be keeping that information from their children. So there have been real positive things there.

But in terms of teachers’ experience, that awareness has not necessarily come with a sense of self-confidence about teaching and supporting autistic students. Some of that lack of confidence has then filtered into demand for things like bespoke training. For example, “I cannot look after this autistic pupil in my class because I have not had the training.” That is a difficult route to go down. We have an Autism Act; there are lots of other diagnoses for which one could have an Act. If people are seeking autism-specific training, there are lots of other young people who are going to come through their class with different diagnoses. It becomes a bit of a treadmill.

Of course, that model of doing things is diagnosis centred, not needs centred, as Karen highlighted. That is essential. So people’s needs may or may not map on to the classic presentation for their diagnostic category. It also, of course, risks overlooking those young people who do not have a diagnosis but still have those needs. As we have heard, that is also not distributed evenly in the population. People from particular gender and ethnic groups, and in particular geographical areas of the country, are particularly unlikely to get a diagnosis. That can increase inequality gaps if we do things by diagnosis. In summary, raising awareness is a big step forward, but lots more steps come from that. In the absence of people feeling confident about what to do with that knowledge, they can feel out of their depth and therefore annoyed at the autistic pupils in their class or annoyed at the demanding parents who are requesting this, that and the other, and so on, in the shorter term.

As I mentioned before, we have this narrow normative expectation of how an average pupil would behave in school, then these quite sort of bureaucratically effortful, hard-won modifications to that for autistic pupils absorb a huge amount of parent energy and burden. Also, when those EHCPs are contested, a huge amount of state investment goes into those contested debates. That seems like a big waste of resource, both on the family and the state side.

The last bit of the question was around the consequences of failing to improve, including the family impact of these EHCP appeal processes in terms of cost and family burden. We know that autistic pupils are more likely to be excluded from school. These data are slightly old, but ALSPAC data suggests a seven times higher rate of exclusion before eight years-old, and you are twice as likely to be excluded at 16 years-old if you are autistic. There are lots of parents who are home-schooling their autistic children, not because they have a core belief in home-schooling, but because they have given up on the school system. That is an important distinction.

Obviously, lots of autistic people are establishing anxious-related patterns and mental health problems through their school experience and potentially leaving with low self-esteem and a real sense of stigma around being autistic, which maybe relates to the statistics Jonathan mentioned about the low rates of reporting of autism in higher education. So those are the consequences, if we do not do better, in my opinion.

Professor Karen Guldberg: To add to the points of Jonathan and Sue, I absolutely agree that the intentions and aspirations of the Autism Act and the strategy have been laudable. There is better awareness now. On many levels, things have improved. Many schools have fantastic practice and are truly inclusive, but it is not across the board; even on the broader local authority level, there is a bit of a postcode lottery. A number of interrelated factors come into this that have led to the situation we have today. We cannot overlook the fact that we are still living with the consequences of the pandemic; we have not recovered from that yet. That has had a real impact on the situation worsening for many children and young people.

As Sue highlighted, it is twice as likely for an autistic child to be excluded from school than a child who has not got special educational needs or disabilities, and the suspension and absence rates are also higher. For example, in primary school, autistic pupils are two-and-a-half times more likely to be persistently absent; that is, they lose or miss 10% or more of the sessions, and the suspension rate for autistic pupils in primary are 5.2%, compared to the primary school population of 1%. In secondary, the rates are 14% compared to 8.5%. Sue’s points about home-schooling are absolutely right. It is really important that we understand that home-schooling happens as a result of the school system failing the children and young people, rather than necessarily it being a choice.

The overall concern is that, at a deeper level in our education system, we need to do a lot of work to recognise and meet the needs of neurodivergent and autistic children in education. We need to do a lot of work to meet those needs earlier and recognise what the support needs are. We have a lot of work to do to rethink or reset the approach that we have across the board, and that needs to cover identification, teaching practices, curriculum, assessment and funding. It does not necessarily mean that we should be putting a lot more emphasis and pressure on teachers. We need a rethink about what we ask teachers to do and the amount of time they need to spend on the things that they spend time on. I emphasise the question of identification of need, because that issue faces all children. For any child who has any form of developmental delay, if we can become better at identifying where those difficulties and barriers to learning and participation might be, if we can become better at that in the education system, we will become better at meeting the needs of neurodivergent and autistic children and young people. That is important.

I know that we have a question later on where we can look at that in more detail. It is absolutely crucial for resolving some of the issues that we are facing. As I indicated before, it is both a structural and cultural issue. Without changing the cultures of schools, we are not going to be able to move forward. The consequences are dire, as Sue has outlined. Failing to support leads to exclusion and suspension rates; mental health and well-being issues and often route into long-term unemployment. I wanted to highlight some points that came from research we undertook a while ago. That was related to the impact on self-esteem for the child; 83% of parents said it impacted on their child’s self-esteem when they had been excluded from school, for example; 54% felt let down by the education system; and they felt there were broader impacts on the family in terms of stress, time off work, financial issues and problems for siblings and divisions in families.

We know that autistic children and young people have higher levels of bullying, increased isolation, depression and anxiety, as well as suicidal ideation. So it has dire consequences, and we have our work cut out. We have moved forward—I am not trying to paint a completely bleak picture—but we need to recognise how important it is to address these issues and look at where we need to put the energy to turn things around.

Research has been undertaken on the economic impact, for example. The Knapp study highlighted that early intervention and approaches can reduce lifetime costs by 66%. Meeting needs early and in a timely fashion is absolutely crucial.

The Chair: I do not want to take away from everything you are giving to the session, which is incredibly important, but in the interests of time I ask you to keep your answers relatively succinct.

Q69            Lord Crisp: I will ask you all a question and a supplementary. To what extent do autistic children and young people have access to the provision and support they need throughout their education? To some extent you have already answered that. What are the main barriers to the provision of accessible education? The Government have suggested that they want mainstream schools to be made more inclusive, including through adapting classrooms, creating specialist facilities, and so on. What would the Government need to do to enable mainstream schools and other mainstream educational settings to meet autistic children and young people’s needs more effectively?

Professor Karen Guldberg: On the extent to which children and young people have access to the provision and support they need, the indication is that, as I have said, we have a long way to go there, despite there being excellent schools and brilliant practice. We also need to recognise that many parents feel that their voices are not heard by local authorities in schools, and we need to look at how they can be equal partners in the process of selecting, managing and monitoring education for their children. They need to have a voice in outlining the support and the adaptations that need to be provided.

I would advocate for a family-led process of identifying how needs present across both home and school environments, reflecting that needs can be hidden at school. There is a lot of frustration out there among parents about having to fight for the acceptance that their neurodivergent or autistic child has needs that should be met in education. Often, they have to show how bad things are before they can be heard and listened to.

When we undertook research with school leaders, they argued very strongly that they felt that more flexibility is needed in schools. That includes uniform policies, safe spaces and noise-cancelling headphones. They felt that they needed more support from local authorities—from autism teams and external services—and they highlighted the need for continuous professional development. They felt that all individuals directly working with autistic people should have an appropriate level of knowledge and skills to enable them to respond to the needs of an autistic person. It is probably not surprising to hear that people have argued strongly for better funding.

We need to create a curriculum that is accessible from the outset. The graduated approach of “assess, plan, review” is fantastic, but we have work to do. We are trying to input into the curriculum and assessment review on this as well. The curriculum really needs to be accessible to all children and young people from the outset.

It would be fair to say—and this is feedback we have had from parents—that many autistic children are not clearly suited to either specialist or mainstream education. They seem to fall in the gap and constantly be let down by both sides. Again, we come back to the need for a more nuanced identification and understanding of need, and better planning of school places across mainstream and specialist provision.

On new provision and resources for children in mainstream schools, we need to have clear national specifications for these provisions. Those will need to be enforced somehow, setting out how they can be truly inclusive and how they can cover safe places, because the risk of the establishment of new provision and resources will always be that autistic children and young people can become segregated and hidden away from other pupils.

Professor Sue Fletcher-Watson: I will not say anything about barriers—Karen covered that—apart from to reiterate this feeling that there is a lack of family-school partnership. We have created quite an adversarial system, whereby people who should be working together in the interests of the child are set up as enemies, squabbling over resources. That is deeply problematic. To the extent that the child picks up on that, it reinforces that idea that they are a difficult person who is causing everyone else an awful lot of trouble, which is obviously not great for their well-being.

I will go straight to how we might overcome some of these barriers. My feeling is that, as Karen says, we need to think about flexibility in our school system: a much broader inclusive system, building in that flexibility that educators are asking for. That has to think about our Ofsted inspection process and expectations, the way in which schools are funded, and the way that needs-based assessments are done and gatekept.

The committee has probably heard about universal design; it is absolutely essential as a principle and guiding model for how we might create that flexibility within schools. That is universal design in terms of physical spaces, but obviously we are not about to replace our entire schools estate overnight, so it is also about universal design in things like approaches to learning and so on.

Another big area that we need to think about is the relationships that autistic pupils have with other pupils in the school, with educators and with each other. I do not think we have, historically, paid enough attention to the relational aspects of the school experience. Given that we know that an absolutely core defining characteristic of being autistic is that you approach and experience relationships with other people differently from non-autistic people, it is bizarre that we have not really attended to that—or at least that the way we have attended to it is through the training model, as if we can teach autistic people to be less autistic. That has been deeply problematic in terms of mental health.

Thinking about those peer relationships, my team has done work looking at primary school curricula for teaching people about neurodiversity, learning about the differences within the classroom in a similar way to how young people learn about things like religious and cultural diversity: not one diagnosis at a time but a broader set of principles of “Gosh, we’re all different. We’re doing things in a different way. We’re experiencing the world differently”. Our work in secondary school has been more focused on peer-support models, bringing neurodivergent young people together to cultivate those opportunities to bolster self-esteem, share top tips and that kind of thing.

On outcomes, we should focus on well-being and a sense of belonging in school—that has clearly come out of the evidence so far. I have really liked the fact that the Government have been talking about a sense of belonging, which is really important. These things are a prerequisite for being present in the classroom, participating in the classroom, and learning and achieving to your full potential. That is where I would really want people to focus for autistic kids in school.

Dr Jonathan Vincent: I will pick up on a couple of the points and reiterate them slightly but in a different way. I completely agree with Karen on the school issue. There is a systemic problem with the extent to which we can make mainstream more inclusive. That is not to do with the work of teachers and SENCOs—thousands are working extremely hard to support our autistic young people in schools and do what they can. But they are working in a system that is broken. You mentioned Ofsted. It is a very high-stakes environment where autistic children can be perceived as too great a risk in that context. That is alongside a financial situation where, for over a decade, education spending as a proportion of national income has gone from 5.6% in 2010 to 4.1% in 2024. So, every educational institution is feeling a squeeze, and they do not have access to the kind of provision that they feel that they need; they do not have access to educational psychologists, or the money to have training or to be able to engage in the kinds of supports that they know would be beneficial.

Our autistic young people are telling us again and again in every paper we read about how the school environment is inaccessible and how the classroom systems are inflexible. They find difficulties in terms of managing transitions—sometimes just micro-transitions between one class to the next but, equally, big transitions between primary school to secondary or secondary to adulthood, further education or higher education. So we have some real practical barriers as well—and Sue mentioned also the relational aspect of schools. Between 40% and 94% of autistic children are bullied in schools. That shows the level of the problem that we have in terms of how peers are interacting with autistic young people. There are also issues with how young people engage with staff, and those relationships as well. On the outcomes, it is unsurprising that we have a range of young people who are choosing not to engage in education. We see school avoidance as a crisis but, really, it is an anxiety-related absence. School is simply not accessible for these young people; the relationships make it extremely hard, and the stakes are perceived to be too high for them to be there.

Your secondary question was about moving to a more inclusive system. We need to invest in that. I am 100% behind having a much more inclusive mainstream system; inclusive education leads to inclusive societies. That is what we want—but you cannot do that without investing or reconceptualising what mainstream education looks like and how we do it, as well as how we engage with our teachers and professionals to make sure that they are trained to be able to do it satisfactorily.

​​Lord Crisp:​ Thank you. Let me just ask a supplementary question about home education, which has been mentioned by two of you—and, indeed, by you in that last remark. I declare an interest, in that I know a little about this at second hand, in that I have a relative who is home-schooling two children.

About 110,000 children are home-schooled and about 60% have some special needs; a large proportion of those are autistic, diagnosed or undiagnosed. It has increased massively since Covid, which ties in with what some of you have said. As you said, Karen, it is very largely about parents who have tried school and school having failed them. Having during Covid had to home-school, they have accepted that as the better choice. The reality is that that will continue for some time, because school is not going to improve in all the ways we have talked about, while these children are at school. What is being done, or what should be being done, to support those tens of thousands of autistic children who are being home-schooled?

Professor Karen Guldberg: All the points that you have alluded to are important here. There are a whole number of factors that lead to these decisions being made by children and young people and by parents. There has also been some interesting research on the changes for those children and young people after they transitioned to home-schooling. A lot of research has indicated that parents were more able to meet their children’s social and emotional needs, including sensory needs and promoting well-being—that they learned better, more progress was being made and they improved their self-esteem. There are struggles for parents in managing competing demands around loss of income and the time commitment in being a home educator.

Interestingly, parents have reported using much more individualised and child-centred approaches, which is what we would advocate for in school as well. They have also customised educational contact, teaching methods, pace and resources. We could do more to learn from parents, particularly parents who are home educating, to understand why it is that that environment works so much better than school for many young people, and what it means for adjusting what we offer in schools. We also need to learn what we can about what it means for being more flexible. I know that there are all sorts of issues around safeguarding and a number of other issues that we have to consider in this, but in some countries there are much more flexible options on offer for schooling. For example, in Poland they have a school in the cloud, with about 30,000 pupils that are part of that—and it is part of the law in Poland that that can be offered to young people who are struggling with going into school. There has been positive feedback from that.

From an evidence perspective, we need to do further research. We need to understand more about parents who have a less positive experience; we need to understand more about what good online delivery can provide for children and young people—so it comes back to the point about flexibility as well.

Professor Sue Fletcher-Watson: I agree with everything Karen said, so I shall not repeat it. However, I shall say two things. One is that one concern that I have around home-schooling as a solution to the failure of the mainstream system for a given child is that it drives further inequality. It is an option that is successful for particular kinds of families with particular kinds of jobs and particular kinds of educational background themselves, in terms of feeling confident to take on that role as educator for their children. Those families for whom home-schooling is not an option are stuck in the loop of exclusions and non-attendance at school, and so on, without a get-out. That is where something like the system that Karen mentioned in Poland could be incredibly beneficial.

The other thing on exclusion as a pathway into home-schooling, which is incredibly common, is that one area in which we are failing young people is that we do not have any kind of systematic response post-exclusion to starting a new school, or post-suspension to go back into the same school to reintegrate, learn from and correct the mistakes that led to the initial absence from school. I realise that this is not so much about how we can support home-schoolers as how we can stop people going down that path, if that is not what they initially wanted—but I wanted to flag it as it is a missing piece of the puzzle. People get stuck in this suspension and exclusion loop, with no way out.  

Dr Jonathan Vincent: I will leave it there.

Q70            ​​Baroness Hodgson of Abinger:​ What are the main barriers to the effective identification and support of autistic children and young people, including through diagnostic pathways and education systems? What would be the best way in which to overcome those barriers? Media reports have suggested that the Government are considering legislation that would reduce the numbers of children receiving EHC plans, while seeking to improve early intervention in mainstream settings. In that context, what would the Government need to do to ensure effective pathways for the identification and support of autistic children and young people?

Professor Sue Fletcher-Watson: In a nutshell, on barriers, there are the things that we have mentioned briefly already—variability in access to diagnosis according to sex of the child and ethnicity of the family, as well as geographical region and socioeconomic status. All those things prevent access to diagnosis for groups that are already potentially marginalised or disadvantaged in our society. Beyond getting a diagnosis, implementing that diagnosis in terms of what it means for school support again places a huge amount of weight to be advocates for their children and go through elaborate bureaucratic processes, with the expectation that that will be resisted by a school system that is struggling with funding and trying to manage resources, so putting up hurdles. That is the systemic problem.

I shall just skip to the part about the government plan to reduce EHCPs and increase early intervention. This rings slight alarm bells for me, because I am anxious that the articulation of this is “If we could just get in early and fix the kids when they are really young, then they would not need any support later on in school”. That may or may not be the intended ethos behind it, but that is the alarm bell for me.

Support at an early age is really important, but I do not think that is necessarily going to prevent anyone needing an EHCP, because if that support is successful and the child starts being very engaged and present at school and having a really successful time, that then needs to be maintained throughout their school career. We cannot say “Everything is now great with little Jimmy, we will take away his support package”, because little Jimmy is still the same kid he always was and is going to be, and he is then going to start struggling. Support needs to be maintained.

The way we can reduce ECHPs—which I think would be desirable because they are such a bureaucratic and effortful way of offering support—is by going back to that more inclusive and flexible system. If the default school package catered to more young people—to a more diverse range of young people—you would have fewer young people needing special modifications because their needs would be being met by the system. For me, it is all about needs that are met or unmet. Every kid needs a chair to sit on, a table to sit at and a pen to write with. These needs are met by the system as a default, and if we could increase the list of needs that are met as a default, then people would not be in a position of needing to articulate, request and monitor for the provision of special needs. That is my feeling.

Dr Jonathan Vincent: Part of the question is both identification and diagnosis, and part of that is the challenge. The identification of needs is where children will be successful, because we know what they need and we can provide for that. Diagnosis very often becomes the gateway to identification and support, which is then problematic. It is therefore not surprising that we have huge waiting lists for those who have been referred for a diagnosis. But it is understandable from a parent’s point of view—I am the parent of an autistic child—that diagnosis enables one to make sense, and to help them to make sense, of who they are, why they might be different, what strengths they have and what support they might need in the future.

One of the problems is the coupling of diagnosis and identification of needs. The next strategy might look at “How do we decouple these two things?” How do we focus, like Sue said, on simply meeting the needs of children without having to have a diagnosis as a kind of prerequisite? While that is not a prerequisite for an EHCP per se, it very often is. I think that is something that parents see. That is one of the reasons why we are seeing it more and more. But if we meet the needs, I think parents would not feel the need to develop that.

The identification of needs happens in schools and among teachers and SENCOs. They do a fantastic job. We know from the last published SENCO workload survey, SENCOs say “I do not have time to do this job as it is, not to mention an increasing workload. I cannot do it with the resources that I have available to me”. Equally, many teachers report: “I do not feel confident supporting autistic children”, and we see that again and again. They might have an awareness of autism, but they do not understand how to meet those needs, and they lack confidence and they want it. Part of it is systemic. Our teacher training has been stripped out over the last 10 years. We have moved from university to school-based teacher training, and part of that has been stripping out the support for SEND generally, but autistic children in particular. One of the things the strategy might look at is developing standardised autism-specific modules into the initial teacher training and early career framework. How do we make and embed that, and how do we ensure that it becomes something we can assess and hold schools and universities to account for, by asking “Are they doing it?”

On the question on the removal of EHCPs, I agree completely with what Sue has said so far. It is similar to my answer in terms of inclusion: if you want to do that, we have to radically rethink what mainstream education looks like and ensure that it becomes a place which is universally designed for as many learners as possible, without having to have additional things. We know that, absolutely, there will always be some young people who need specialist provision, and we need to fund that. But, if we want to change our system, then we need to fund something much more accessible to more people and we can look to other examples—Karen mentioned Poland. If you look to the Nordic countries, only 1% of children in Sweden’s primary schools are registered as having a SEND because they do not need it. They have a system which is, by and large, “one school for all”. There are examples and models we could follow, but it would be a radical way of redoing education.

Professor Karen Guldberg: I wholeheartedly agree with the points that both Sue and Jonathan made here. We really need to decouple and create better pathways between diagnostic assessment, health and identifying needs in school. If we look nationally, in 2022-23, the early years foundation stage profile showed that only 67% of children were considered school-ready. I am not saying that everything should go into early intervention, and I completely agree with Sue’s points on that. Support is needed across the lifetime of being in school, but there are major disparities, even at that early years’ stage, and inequalities where children eligible for free school meals, boys and certain ethnic groups are further behind. There is a demographic disadvantage as well between London and towns and areas outside London.

Coming back to the points that Jonathan was making, it is about accurately assessing children’s learning and development and effectively responding to that need with an evidence-based educational approach. That is absolutely crucial in an inclusive school system, and that means that targeted support within a school system should not be dependent on a diagnostic assessment.

The point that has been made about teachers lacking confidence and understanding is also true. It is the role of the scientific community to ensure that schools can access robust evidence to inform the use of approaches to how we identify and address needs. The identification and addressing of needs should go beyond academic attainment, and it needs to incorporate emotional and social strengths and needs—we need to understand more about the unique developmental stages of a child or young person and their strengths. What is it that might trigger particular responses? It is not a matter of, “What is wrong with you?”, but a matter of identifying how we can help and support and how we can ensure that that young person can access their right help—and that they have a say in it and a voice in being able to talk about their aspirations and what they need and want from school, and what their strengths are.

We need to look at how we can make better use of existing educational assessments in the system—we have been talking about that, and I have been talking about that with a number of different people—in order to be able to build better and more holistic assessment of a child’s strengths and needs. There looks like there is going to be some research that we are going to be able to undertake on that. That will be really important. Pathways between health and education are really important. We need help to ensure that those pathways are strong. The PINS programme, which has been trialled in this last year, where Health and Education have been working closely together, is really promising. We are waiting for their evaluations of that. That Partnerships for Inclusion of Neurodiversity in Schools programme is promising, from everything that I have heard and seen. I am looking forward to seeing further evidence that comes from the evaluation of that. Those were the additional points I wanted to make over and above what Sue and Jonathan had to say.

Professor Sue Fletcher-Watson: Can I fit in a 30-second addition? Thank you so much. Sorry, this just occurred to me while you were speaking.

When we talk about evaluating needs, one of the ways we have got ourselves into trouble is that we cannot really disambiguate needs from diagnoses very often, when we are talking about it colloquially. There is quite a lot of research that shows that teachers and early years practitioners, for example, are not very good at identifying who might be autistic in a classroom. But that does not matter: if they can identify who is struggling to concentrate or who cannot sit still for a whole lesson, those are the kinds of immediate needs we should be catering to. I think we have disempowered teachers by putting them in a position where they are meant to act as a sort of pseudo-diagnostic practitioner in the classroom. They have to first work out what the diagnostic label might be and then work out how to respond, instead of just being able to say, “She is really struggling to remember instructions. He’s really struggling to sit still” and respond to those immediate needs.

Q71            ​​Lord Hope of Craighead:​ My question is about transitions to adulthood. It is in three parts. First, what are the main barriers to the effective provision of support with transitions to adulthood for autistic children and young people? Secondly, what impact, if any, have the Autism Act, statutory guidance and autism strategy had on support with transitions to adulthood for autistic children and young people? Have they been effective or not and, if so, why, either way? The last question is, what would be the best way in which to improve support with transitions to adulthood for autistic children and young people? Jonathan, you touched on this earlier, so would you start for us?

Dr Jonathan Vincent: I will start by saying a little on in which ways the Autism Act and strategy have been successful, because one of the successes has been the focus on transitions to adulthood. That is a key success of what has gone before in terms of the legislation and strategies. That has led us to think more about people’s across-the-life course. I have heard that from the previous session here, in thinking about health and the ways in which people are engaging in life as adults in a whole range of ways. That is a real success.

One of the things that I like about the strategy is that one of the goals is “living well in the community”. In terms of transitions to adulthood, that might look like people living independently or in some sort of supported living. It might be people being able to make decisions about their own life and what they do—engaging in work, be that part time or voluntary or full time. It might be about accessing friends and communities and having a sense of affiliation with others and, for some people, going on to higher education. So the transition to adulthood can look quite different. But typically that is what many people want and is what the research shows us. They want pretty much the same thing as any person wants in life.

What we know is when we get that right for autistic—I am going to say emerging adults—up to, say 25, 26 or beyond, even, it improves well-being. People are able to be happy and flourish in their lives. They are less reliant on services, because they do not need them, and are more economically active because they might be working. So we know that if we get it right, there is real success. One of your previous witnesses said it was about investing now to save money in the future. That is absolutely key to the transition to adulthood.

One of the challenges, however, is that this is a time of flux—a time of identity flux for any young person, really, and trying to work out who they are, what they want to do and where they want to live, et cetera. That is, in its own way, disconcerting and difficult for people. But then let us throw into that an autistic person who is also trying to make sense of defining their autistic identity. Some people might have been labelled at five and known they were autistic the whole way through their life, and they get to become an adult and think, “I do not want to be autistic. I do not want to be seen as that any more”. Some people are just learning they are autistic, and it is important to them. So we cannot assume everybody is in the same position to begin with, and that is important. Then, legally they are in that state of flux. They are moving from childhood to adulthood, from child and adolescent services to adult services, which are immensely complex, whereby often they are having to advocate for themselves, and they might have to have a diagnosis to access those services or have needs that are perceived to be so complex that they meet the criteria. So it becomes a challenging space in terms of the transition to adulthood.

I said that employment was a key part of that. I did not mention that earlier in terms of success, because it is probably an area where we have not really had success with the strategy. It is a key part in terms of what many people want. The Buckland review recently demonstrated to us that we are still not meeting the needs that autistic people have who want to work, and there are many who do. We know that young people are not in sustained employment. Only 17.5% of autistic young people are in sustained employment. We know that the rates of autistic adults in work generally is around about 29% to 30%. My research with autistic graduates shows that they have the worst unemployment rates of any disabled group in higher education, and they are some of the most clever and engaging people that you will find but they are unable to access work because there are barriers with recruitment and in terms of in-work stigmatising attitudes. There is a lack of awareness about access to work or what kinds of reasonable adjustments exist and if someone should be able to access them.

There are difficulties for that emerging adult in having to advocate for themselves, often without other people being able to support them. It is a challenging time. That is what I want to say—and where I think we can move things forward in the next strategy is around engaging with autistic young people or emerging adults and their families listening to them. We know that engaging in that support early is important, but it is more about when they are ready than early. We need to invest in transition age services, recognising that this group falls between the gaps. We need something quite specific, perhaps. That might relate to supported living, supported employment, developing things that have been successful like the supported internships and the Civil Service et cetera, then developing understanding with employers and service providers and developing these models of good practice that can be scaled up.

Professor Karen Guldberg: I will try and be brief because Jonathan has given a comprehensive answer. I totally agree that the starting point needs to be about living well in the community. That means that we need an education system that also focuses on the development of co-operation, problem solving and innovative thinking, and prepares children and young people for adulthood. That needs to have the involvement of children and young people, the families and relevant professionals at the right time.

In terms of adding to Jonathan’s points on clearer choices and pathways, we need to become better at providing young people with understanding about their choices and pathways. We need also to think about how we work more with employers. Many employers want autistic young people to come and work for them; enlightened employers want to employ them. There is some work to be done there in terms of shaping the attitudes of employers and helping them to understand what autistic people can contribute significantly to the workforce, because we really cannot continue having the situation whereby so many are outside the workforce. There also need to be clear pathways and data-sharing between education, social care and health. That is a big issue that I am not going to try and go into, because I am aware of the time, but I agree with Jonathan’s points as well.

Professor Sue Fletcher-Watson: The only thing I would add to these experts is that one of the things that we fail to do with autistic people leaving school is to give them the self-advocacy skills they are going to need as adults. You have to be much more self-sufficient in further and higher education and employment. If you are a patient seeking healthcare and so on, you need to know yourself and your needs, understand your profile of needs, be able to explain those to other people and request particular kinds of support. We could do more by explicitly teaching those skills to neurodivergent young people so that they have that as a skill set to take into their adult life.

Q72            ​Baroness Ritchie of Downpatrick:​ We have had fascinating evidence this afternoon but, following the end of the autism strategy for 2021 to 2026, what do you think the Government should prioritise to improve access to education and transitions to adulthood for autistic children and young people?

Dr Jonathan Vincent: It is nice to hear another Northern Irish accent.

Baroness Ritchie of Downpatrick: Yes, I thought you had one as well.

Dr Jonathan Vincent: I will try and keep it brief. We have mentioned before but one of the key things for me would be about decoupling the diagnosis from the identification of needs. That is key and is where the strategy probably needs to emphasise things. It is about having inclusive systems, and designing education, transition services and employment in a universal way, whereby most people can access it. That is where we need to be moving. Decoupling those things is important. In doing so, we should increase funding. That is a reality, but that would be an investment now for the future, and is possibly saving money. Within schools, we need to embed standardised models of good autism teaching and understanding in our teacher training, in ongoing CPD and potentially in higher education.

The final thing is to invest in transition age services. We need to recognise that this is a group of people who often fall between the cracks at a time that is the most important, when the risk of mental health, depression and anxiety is extremely high. We need to recognise that, recognise the risks, put services in place and really focus on them, because to do so can lead to living well in your community, but to not do so can have some quite poor outcomes. That is something we need to be concerned about.

Professor Sue Fletcher-Watson: I have four points. One is greater flexibility for authentically inclusive schooling, meeting not just the needs of autistic young people but all sorts of neurodivergent young people or young people who currently need additional support—and doing that through the application of universal design principles in physical spaces and in approaches to learning and curriculum. My second point is an emphasis within Ofsted evaluation criteria on schools meeting the needs of neurodivergent pupils and cultivating a sense of belonging in all pupils in the school. Neurodivergent young people should be key informants to inspectors when they are making those judgments. A third point would be teaching explicitly about neurodiversity and using the model of neurodiversity to drive reforms. Again, it makes economic sense to do things that can maximally benefit lots of different marginalised or minority groups in schools. The fourth point would be explicitly teaching self-advocacy skills and giving young people the experience of successfully self-advocating and having a positive result that they can then take into their adult life.

Professor Karen Guldberg:  I totally agree with those points. We have made the point about the importance of universal design. We also need to look at Ofsted in terms of inclusion and belonging. That will have a real impact on the culture of schools if we can move away from the focus being purely on academic attainment but to also focus on what it means to have inclusive practice.

I totally agree with Sue about the need to educate on neurodiversity and to bring that into the curriculum, in particular the PHSE curriculum, which could be really helpful for that.

Self-advocacy is absolutely crucial, because the most recent National Autistic Society survey of young autistic people found that only 2% of those young people felt confident to ask for help. That indicates to me the extent to which we really need to address this and give young people that agency.

Continuous professional development is crucial in this, from initial teacher education through to the early career framework to post-year 3 after qualifying. Teachers are keen to understand better how to meet a broad range of needs, and are good at assessing at most stages, but we have a job to do in supporting them with the evidence and tools to be able to do that.

Lastly, I will touch on a point Sue made earlier that is absolutely crucial. An education system that focuses more on the relationships that are built within the education system is crucial to all this. Again, this is something autistic children and young people tell us. They consistently make the point that what made the biggest difference to them in school was the relationship they had with their teacher. For many, this was on a negative basis, if the teacher did not understand them, but those who had teachers that understood them were much more likely to have a good school experience.

Some of this is also about changing our attitudes and the way we talk about behaviour. We talk about the importance of understanding the distress behaviour that might be displayed by autistic children and young people as a result of needs not being met in school. We need to develop a more curious approach and bring back into schools some thinking about what a behaviour might be communicating, and understanding what it means for the child.

Let us build understanding, awareness and acceptance into the school system and develop a school system that has, as its starting point, meeting the needs of all children.

The Chair:​ Baroness Browning and Lord Wigley both want to ask a supplementary question.  

Q73            Baroness Browning:​ Thank you very much.  I will just make quite sure that I have fully understood some of the things you have said in the final answers you have given. I quite understand why the umbrella term “neurodiverse” incorporates and can provide services that can benefit right across a spectrum of conditions, including autism. I am concerned about decoupling diagnostics from the term “autism” specifically, mainly because it is a spectrum in itself. We know that when we are trying to provide services for people with autism, if, for example, you are applying for disability benefits for somebody with autism, it is a very difficult thing to do. If you are involved with the health service, particularly mental health, again, that diagnostic term is key to whether or not your condition is prioritised and taken seriously. I am rather nervous about the progression into umbrella terms. I sat on the Autism Bill 2009 Committee in the House of Commons and I am concerned that if autism were to lose its identity, as such, life would become even harder for the people on certain parts of the spectrum.

Professor Sue Fletcher-Watson: I do not think any of us are advocating that the diagnostic category of autism should be got rid of or put by the bye. We are talking about a sequence of events where, for children and young people, it feels like it needs to be diagnosis first and support next. While you are in that diagnostic queue, you are sort of stuck. The other problem with that is that it suggests that the support package is not linked to the individual young person and their profile of needs but to the diagnosis. So, if you are autistic, you get the autism package, whether or not that meets your particular profile of needs. We are talking about the decoupling of understanding the child’s profile of needs from the diagnostic process, and those two serving different purposes in parallel.

Dr Jonathan Vincent: Yes, absolutely. I think your point is around the perceived danger, perhaps, of lumping everything in together and losing what might be important to autistic people who might have a co-occurring learning disability, have much more complex needs and might require different types of support and interventions. At the same time, we know that 65% of autistic people without a learning disability have other co-occurring conditions.

That is why the term “neurodivergence” is helpful, because, as Sue said, it might be, “I am autistic but actually my mental health conditions are actually the most problematic to me”. Or it might be, “I’ve got an autism diagnosis but it is not only that. The dyslexia or the ADHD is much more problematic and causes more challenges”. I can see the benefit, because people are very often much more divergent than just one single diagnostic label.

But we need to be careful. You are right, we need to keep talking to the autistic community about what works for them, how they want to label themselves and, ultimately, what is helpful in terms of accessing support.

Lord Wigley: My question is to Professor Fletcher-Watson specifically, and it does not require an answer now. I have noted your involvement with Scottish Autism. I was involved with Autism Wales for a number of years and we work closely with Sue Leekam, whom you have links with.

Given that we are looking at autism in the context of England only, is there any experience from education in Scotland that may be helpful for us to look at that might help us in our deliberations in regard to this specific inquiry?

The Chair: That would be very helpful, Sue, if you have any examples that you could send us.

Professor Sue Fletcher-Watson: Yes, I will follow up. I would say that many of the same problems exist in Scotland. We do not have any magic solutions for you, but I will give it some thought.

The Chair: Thank you very much indeed to our three witnesses on a rather warm April afternoon for staying and giving us some really helpful insights as we start to think about some of our recommendations. The committee will meet in public again on Thursday 8 May. In the meantime, this public meeting is concluded, and I now draw today’s evidence session to a close.