Autism Act 2009 Committee 

Corrected oral evidence

Monday 28 April 2025

2.50 pm

Watch the meeting 

Members present: Baroness Rock (The Chair); Lord Addington; 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. 9              Heard in Public              Questions 60 - 66

Witnesses

I:  John Phillipson, CEO, North East Autism Society; Professor Ashok Roy, consultant psychiatrist and associate medical director, Coventry and Warwickshire Partnership NHS Trust, and National clinical lead for learning disabilities and autism, NHS England Workforce, Training and Education; Professor Rebecca Charlton, Professor of Psychology, Goldsmiths, University of London.

Examination of witnesses

John Phillipson, Professor Ashok Roy and Professor Rebecca Charlton.

Q60            The Chair:​ Good afternoon and welcome to this public meeting of the House of Lords committee on the Autism Act 2009. The committee has been appointed to examine how well the Autism Act and the Government’s autism strategy are working and to make recommendations about what the Government should do next. We have two evidence sessions today. In this session, we will explore the barriers to building effective support in the community for autistic people and discuss how those could be overcome.

We are delighted to be joined today by John Phillipson, the CEO of the North East Autism Society and Professor Rebecca Charlton, professor of psychology at Goldsmiths, University of London, both of whom are joining in person. We are also joined remotely by Professor Ashok Roy, consultant psychiatrist and associate medical director of Coventry and Warwickshire Partnership NHS Trust, national learning disability and autism clinical lead, NHS England workforce training and education, co-chair of the Learning Disability Professional Senate and chair of Birmingham Autism and ADHD Partnership Board. You are all very welcome.

We will continue hearing evidence on Monday afternoons on most weeks when Parliament is sitting until July. We have also published a call for evidence on World Autism Acceptance Day—2 April—which is available on the committee’s website and is open until 2 June for anyone to respond to.

The committee’s job is to scrutinise the Government and their policies. We are not able to help with individual problems or complaints, and we do not permit personal criticism of individuals, as they do not have the right to reply. Members of the public can watch our proceedings either online or in person but are not allowed to speak during a public session.

Our evidence sessions are on the record, which means they are broadcast and a written transcript is taken for subsequent publication. The list of members’ declared interests is published on the committee’s 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 also published on the committee’s website, but for this evidence session, Laura has asked me to draw attention to how she has recently been appointed to the Birmingham Autism and ADHD Partnership Board, which one of our witnesses, Professor Ashok Roy, chairs.

I will now ask the first question, and when you answer, could you introduce yourselves briefly, please? What is the evidence on the numbers and characteristics of autistic people who need support in the community? This includes social care, mental health care and housing support and how far they have access to the support they need. In answering the question, could you say how this is changing over time and what the consequences are of failures to meet autistic people’s needs in the community? Perhaps I could start with John Phillipson.

John Phillipson: Good afternoon, and thank you for the opportunity to give evidence today. I have been involved in education and social care since the 1970s, and I have been the CEO of the North East Autism Society for 20 years. I was chair of Autism Alliance UK, an umbrella group for autism charities, around the time the Act was coming into force. I have seen it through its various stages since then.

In my evidence today, I will be highlighting that I have not seen huge amounts of progress in relation to the Act and what has followed from it. I would like to draw your attention to certain statistics—I do not want to rain statistics on you, I am sure that is the most off-putting thing that I could do—to just demonstrate how people feel and how some of the issues are really relevant. On social care, there are 11,600 autistic adults in England with a need for social care who are not receiving any care at all, in contravention of the Care Act. Some 70% of autistic adults reach crisis point before care is provided, leading to confinement in hospital and the breakdown of families. Some 44% of autistic adults and their families wait over two years for support—the recommended time is eight weeks. Even when care is provided, 48% say it does not meet their needs. Some 56% of autistic adults do not try to get care and support because they do not think they will get it.

Closing the gap and providing the sort of care that they need would take the total national spending on social care from 0.4% to 0.7%. We are spending two to four times that much on detaining people in mental health units—around £276 million a year. Three-quarters of the Association of Directors of Adult Services, which gave its report in the spring of 2023, are not confident in offering minimum social care support required by law.

In terms of mental health, there are 2,025 autistic people and people with learning disabilities being held in in-patient mental health units as of March 2025. Of that 2,025, there are 1,060 autistic people—590 have learning disabilities and 375 have both. Half of those detained have been in hospital for more than two years, and the average stay is 4.6 years. That is a really sad figure. More than 90% are detained under the Mental Health Act 1983, which defines autism as a mental health disorder.

Since Winterbourne View in 2011, the Government have repeatedly pledged to close up the 50% of in-patient beds. They missed the deadlines to do this in 2019 and 2024. The main reasons given for delay—I will come back to this in the evidence later—are the lack of suitable housing provision, local and social care support and people awaiting residential homes and care packages in the home.

On waiting lists, an estimated 90% of autistic people over 50 are undiagnosed—but it is a really cloudy picture because they are undiagnosed. There are 20,295 people on waiting lists for an autism diagnosis in the north-east. Almost two-thirds have not had any contact with health authorities. At best, one in five people on the autism waiting list gets seen within the recommended timeframe of 13 weeks.

The rate of autistic adults in employment was 30.2% as of 2023-24, and that compares to 53% of all disabled people and 81% of non-disabled people.

I will quickly mention health: around 12% of autistic people have epilepsy. It is the leading cause of early death for autistic people with learning disabilities. On average, autistic people die 16 to 30 years earlier than the general population, which is appalling.

Some eight in 10 autistic adults report difficulties in visiting their GP. They are twice as likely to need emergency care and three times as likely to require in-patient admission. Autistic people are more likely to develop a wide range of conditions, including heart disease, diabetes, strokes and autoimmune conditions. About eight in 10 autistic people experience a mental health challenge during their lifetime. More than half of autistic adults have had depression. Autistic adults who do not have a learning disability are nine times more likely to die from suicide than the general population. These figures are absolutely terrible. I am just really glad you have given me the opportunity to highlight one of the most significant inequalities in our society today. I hope that across the course of the discussion this afternoon we can highlight some ways this can be improved.

Professor Rebecca Charlton: I am a professor of psychology at Goldsmiths University. I am not going to repeat the statistics that John has already very comprehensively covered. I would like to add that it is difficult to know the prevalence of some of those statistics because, as John said, a lot of people are not diagnosed. Once you reach the age of 40, the number of people over 40 who have a diagnosis is very low. As people get older, they may have more physical health conditions and need social care more—that all means that those people do not have a diagnosis, but they may be trying to access services and that can be a real barrier. I think we will talk more about that later.

John has already flagged some of the difficulties with changes over time: the Care Quality Commission suggests that, between 2019 and 2022, access to mental health support declined. Some of that may be related to the pandemic, but it is a concerning statistic that we really need to monitor and be aware of. John has detailed the consequences clearly, but in terms of access to a good quality of life and well-being, we are really failing people. If 75% of autistic people reach crisis because they cannot access the care they need, we have a way of stopping people getting to that crisis point, which we know adds to trauma, negative experiences, poor quality of life and the huge knock-on effects from that. I think we have the opportunity to try and be more preventative and not get to that point where people are in crisis. I will leave it there.  

Professor Ashok Roy: I think both previous speakers have given you a lot of comprehensive statistics. I just want to highlight that over 200,000 people have been identified as needing assessment and diagnosis. This is a completely unknown population as far as statistics are concerned— where we do not know how big the problem is, except we know it is still there and not being solved very rapidly. These numbers are increasing year on year. They are very slow to be addressed because people are waiting sometimes one, two or three years to be processed, after which point, for many people, there is no change. There is no sudden improved access to services, whether it is social care, mental health care or housing. All the data suggests that mental health care is very hard to access once autism is suspected. It is not uncommon for people in that position to be discharged from mental health services and then be referred to a long autism waiting list, where the whole world goes into a limbo.

With regard to housing support, we know from the limited studies there are that homelessness is positively associated with autism—that is, autistic people are more likely to become homeless than non-autistic people. There are very few places where housing is given a joint priority with access to, say, healthcare—it is often an afterthought. I must say that, as a consultant working in community services and a hospital setting, homelessness can easily double or treble the length of stay in an in-patient unit. We are some distance away from actually making an impact on this unmet need.

Q61            ​​Lord Addington:​ What impact, if any, have the Autism Act of 2009, the statutory guidance and the successive autism subsidies had on the provision of support in the community for autistic people? What have been the effects and, if there have not been any, why?

Professor Rebecca Charlton: One of the things the Autism Act did was increase the awareness and presence of services in certain places, but they are focused in such a way that huge challenges remain. As we have mentioned already, there are increases in diagnostic services, or an increasing number of people waiting for diagnoses, but that is such a massive waiting list that it seems to be a bit of a bottleneck—people are on that waiting list, but other services are not necessarily being provided. In many places, post-diagnostic care for adults just does not really exist. That is a real challenge and barrier.

One of the other issues is not about the guidance alone, but how that is implemented in the real world. We have a structure of services, and when services exist in silos, that on its own creates barriers.

We have a situation where autism in social care often either sits in the autism and learning disability team or in a mental health team. People might be accessing social care because they have problems with their mobility, but if they have an autism diagnosis—which admittedly is a small proportion of people—they are automatically moved to those teams. I have cases of people who say they had really great mental health support from a mental health team, received an autism diagnosis, got moved to a different team and then could not access that support that they had in the first place. These sorts of siloed services really fail people in the real world.

One of the important things is that those autism teams have that expert knowledge. Autistic people need support across a range of different health and social care settings. They might be going to see a doctor about cardiovascular health issues or need help with their mobility, and those people do not necessarily have an understanding of autism or what that means. That is an extra barrier to accessing care. The reality of how this guidance hits the real world is where we have a lot of challenges to overcome. It is most effective when specialists in non-autism teams can pull on that expertise from autism specialists to have a better service, implementation and support for autistic people when they come for appointments.

Professor Ashok Roy: I echo that progress has been slow—it has been patchy and highly variable, and we have to acknowledge that. I have spent many years wondering why we have not made more progress, even though we have a partnership board and we have had helpful commissioners.

This is due to a number of reasons; one is a combination of factors, such as the lack of systemic accountability. You heard about this last week from your witnesses on Friday: there is a lack of accountability to deliver services. There is a lack of awareness and a large lack of knowledge and understanding of the common problems faced by autistic people and their families and carers and a reliance on small, siloed services. We talk a lot about staff training and insufficiently trained staff. We talk about insufficient funding and lack of services, but we do not talk about them together, at the same time, to create a meaningful service offer. We have not used the information that autistic people and their families have told us about again and again since 2009 and before in meetings, clinics, partnership boards and indeed in every opportunity they have to tell us what the problems are. We have not actually heard them properly and responded constructively in a joined-up way.

We have not actually got a service model—this is a big deficiency that I will perhaps come back to later. We have not actually got the scaffolding on which we can develop the workforce. We have not done that either. We send people on training—including Oliver McGowan training—and people come back to the same services they worked in  the previous day, unable to make a change, so that does not help. We need to combine the service model and the workforce skill. This is why we do not have a comprehensive service to speak of in many localities.

There is a lack of ownership of the autism strategy between health and social care. I think health takes some accountability for bits of it and social care takes some accountability for bits of it.

In my clinical role, I see autistic people encountering islands of service: very crowded services with no bridge to the next island of service. The common roots of mental distress and mental disorders stem from adverse childhood experiences such as bullying, loneliness, abuse, not being understood and feeling different. These feelings grow over time, and there is little support for training, education, housing, employment and leisure, those social needs—common universal needs.  The role of the health service is then to pick up the pieces when things go wrong. I think this accounts for a large number of autistic people—70% to 80%—being readmitted within six months of discharge to a mental health unit. That is a shocking statistic. That is because there is nothing for them; nothing has changed in the world out there that sent them in to hospital in the first place.

One other thing which I need to say is that I belong to a small proportion of the workforce that is comfortable providing psychiatric services to autistic people and people with ADHD. We have made our lives very difficult by creating very separate autism and ADHD services given that there is a sizeable overlap between the two populations: about 25% in each direction. So we have no local ways of managing this, and we create situations where people have to go and wait again in another queue to have a fuller diagnosis, in the meantime not getting full treatment for their problems. These are some of the reasons why I think we are stuck because of the fragmentation and the lack of joining up.

John Phillipson: I agree with a lot that the previous speakers have said. The Act raised awareness, and that is to be welcomed. It placed a duty on local authorities and local systems to develop an autism strategy, but it did not really set out objectives in the schedules that followed; it was not clear about them. There was no timeframe attached and no appropriate assessment of money required to deliver. In short, it allowed the local authorities to set their own agenda. Many of them set up partnership boards and had a strategy. Many of them lost the strategy in the pandemic; it stopped happening because of the need to socially isolate and various other things. In advance of the meeting today I asked a colleague just to have a look on the websites of some of the authorities around the region; several of them do not have an autism strategy shown at all, and one has an updated strategy as at 2013. So there is a lack of accountability and of clarity about who is responsible for delivering which service and how, going forward, that needs to be addressed, and I suggest that a good place to start would be to involve service users and ask them to help to define what would be really helpful in terms of outcomes.

The Act and guidance failed to address four key areas. First of all is the stigma that people with autism face. Recent research suggests that 91% of adults with autism do not feel that they are accepted in society, or that they are rarely accepted. Not surprisingly, that has a knock-on effect for mental health, self-image, et cetera. A lot of people still come forward with ideas about how autism can be “cured”, or that it is some kind of disease or condition. There needs to be a massive drive to educate the public and people in services on those issues.

The whole issue of assessment needs some serious consideration, with people waiting for months and months. I was with some people—we were talking about children in this case—who were celebrating the fact that they had got the waiting list down to 50 months. That is appalling, and it is delaying people from having access to services that they really need. We should be assessing people’s needs, and there are ways that we can help with reducing the wait for assessment. In the charity of the North East Autism Society we have a team which works closely with the Great North Children’s Hospital and which, under the supervision of paediatricians, does some detailed observation and assessment work that helps to foreshorten the time needed for an assessment and improve the quality. I am sure we could look at improving assessment.

I have already mentioned accountability. If you look at why people are blocked in hospital and the lack of co-ordination there can be between housing, social care, health and other agencies, there needs to be someone who oversees that. Just to give you one example, the charity that I work with supports a man who was in hospital for 43 years. He has now been living in a bungalow with his own team supporting him, and, as he described it to me, he is living his best life. The quality of his life has improved immeasurably. The cost is significant. It is £4,500 a week to support him in his own accommodation—versus £19,000 a week in the hospital that he was in before. There are good financial arguments to make for doing the right thing. We see too many people who are not supported adequately in the community, their mental health deteriorates and they go into crisis. They become homeless and they find themselves in the criminal justice system. We see this, and it can be avoided, but it needs better local co-ordination, and I do not think that that co-ordination was addressed. The guidance was not tight enough and it did not hold people to account.

Lord Addington: Thank you. If I might be allowed one very quick supplementary question, do you think we have an overemphasis on formal diagnosis as opposed to suspicion or identification of need and solving that? Yes or no?

John Phillipson: There is a need for good-quality clinical diagnosis. But what seems to happen? One of the things I emphasise is that all these organisations employ people who care and want to do the right thing, but, starved of resources or having to make resources spread across a wide range of responsibilities, they have to make decisions, and sometimes the insistence on a clinical diagnosis can be used to ration—to delay—the delivery of services. We need to make sure that there is an assessment of need that makes sure that people get the sort of services that we know they need, and if we need to move on, let us look at how we can improve access to clinical diagnosis and support it through initiatives such as the one I described.

Lord Addington: Just to ask the rest of you, do you roughly agree with that last point?

Professor Rebecca Charlton: I think so. I also think that, under the Care Act, somebody does not need a diagnosis to access care, so it should not be a barrier, but we often hear that it is.

Lord Addington: Dr Roy, would you agree with that?

Professor Ashok Roy: I agree with it strongly. I have an analogy for you. Because the diagnostic process is so heavily dependent on skilled professionals, they can soak up the local resource in diagnosis. It is almost if you are on a journey, and you have a Rolls-Royce assessment—a diagnosis—that is completely stranded in the middle of a desert: you have nowhere to go with your pre or post diagnostic report. You get the idea. There is nothing left by way of capacity in many places once they have used up their resources providing diagnoses, which do not really necessarily provide any resources for getting help afterwards. So yes, I would agree, and a needs-led approach is much more likely to help than a diagnosis-based one.

Q62            Baroness Browning: Good afternoon, everyone, and thank you for coming. I think you have all already given us the main barriers to effective identification and support of autistic people in the community, particularly with your emphasis on the way things work in silos, lack of resources and the important link between health and social care. But what would be the best way to overcome the barriers that you have experienced, and what is the relationship between pathways for autism diagnosis and access to support in the community? How could access to support in the community be improved for autistic people who do not have a diagnosis and who are waiting that long time on the waiting list for a diagnosis?

Professor Rebecca Charlton: I work with middle-aged and older people a lot, so I will focus my comments there. There is this real barrier with diagnosis. We know that most middle-aged and older autistic people are not diagnosed at all. If there are services where a diagnosis is required, then that is a barrier, and that is often the case where you need an autism diagnosis to access specific services. As we have said, the Care Act means that that should not happen if you focus on care.

On the real barriers and how we can overcome them, the systems are just so complex to a member of the general public trying to access them. It is often unclear. A lot of local authorities have a provision where they try to put support in place before somebody has a Care Act assessment, so they do not need a Care Act assessment to access support. But most people do not understand what is happening in those situations—people do not know if they have had a Care Act assessment or not. They have had some sort of assessment, but it was not necessarily a Care Act assessment. I think people in the service think, “Everybody knows what is going on”, but, to the outside, what is happening is completely baffling—whether or not you have had the right type of assessment to get access to the right type of support.

Actually, something that is much simpler to overcome are real issues around communication needs not being accommodated. You may have to make a phone call to get access to a certain service or type of support, and for some autistic people, that is a real barrier. You may have to go onto a website and use online resources, and if you have difficulties with that, if you lack confidence, if there are digital inequalities or if you just do not have access to the internet, again, this is another barrier. There is a real lack of flexibility in the system that should be relatively easy for us to overcome and allow people to communicate in a way that suits them and to be able to access these services and support. That is a real barrier in terms of a complex system, but it is overcomable.

​​Baroness Browning:​ Can you just give us some examples as to how that is overcomable?

Professor Rebecca Charlton: There needs to be an understanding that you can ask people about their preference for communication, for example, by asking “Do you prefer to communicate by text message, email or on the telephone?”, and then you can support that and have services where you can access a service through multiple means.

On an example of some of the barriers, somebody described to me recently that they had received an email telling them they had an appointment for a social care assessment, but it did not say where it was. To know where it was, they had to log into an online portal, which told them where the assessment was. Why are we making this so difficult for people? These are people at a point where they need extra support. Instead of making it easier, we are making it harder. There are real, simple fixes and part of that is asking people about the way they want to communicate and then putting different options in place to support that.

John Phillipson: I completely agree with the earlier point: stigma remains a huge barrier, as we mentioned earlier, and there need to be some challenges to some of the myths and misinformation that are spread, which discourage people from coming forward to access services. We have mentioned diagnosis as an obstacle, and it should be needs-led. I think that the Care Act allows for that. As has been said, you do not need to go through a full assessment to access services.

Training is one of the major things that we need to see from commissioners, so that commissioners understand what the needs of the people are and which services provide the specific components for that service. A description or an outline of what you should include in a good autism service would be very helpful in that regard, as would training for social workers and people involved in the commissioning system so that they better understand the needs of the people they are working with. We see every day of the week that if you support people and give them time so that you understand and can personalise the support that you give, you are going to get much better results: they are going to thrive and be able to develop skills and strategies to help themselves. We need good practice standards, and training could be developed very quickly around that.

Commissioners are not always aware that there are some really good services around in the community. They are provided by small charities, by parents’ groups and by a range of little organisations who do not have the infrastructure to be able to present evaluations and the things that some of the procurement systems require, so we miss out on an opportunity to provide localised support through that system. A local index resource base for people in each area would be a helpful step.

​​Baroness Browning:​ Thank you very much. Can I just ask: given that we have seen huge changes in GP services, particularly since the Covid lockdowns, how good are GPs generally at being the gatekeepers? I am not suggesting GPs should start doing diagnostics, but, in other words, how good are GPs? Everybody has—or most people have—a GP. How good are they at pointing people to the next direction and following that up?

John Phillipson: First of all, access to a GP is an issue across a wide range of areas. Certainly, in the north-east, we have a lot of people who say that they have had real difficulties in being able to see a GP. The quality of support they get from a GP is also variable. I would suggest that some training for some GPs would be good, but access to GPs would be a good start, as would some training being made available for GPs and people who support GP practices.

One of the things that needs to change is that we need people to understand that when I am talking about training—this is just an example that came to my mind—if you have got someone who goes to see the GP and they say, “How do you feel?”, given the issues that we know can arise around interoception, they might not know how they feel. They might not be able to describe how they feel or begin to explain, and that might account for some of the undiagnosed conditions that we see and some of the impacts on longevity and so on. It is really poor that the system can, for example, offer spoken counselling, but people might not have the communication skills that would enable them to participate and benefit from it. There needs to be a real effort to change the way that people are assessed by GPs and others in the medical profession.

​​Baroness Browning:​ Thank you very much. Dr Roy, can you give us some practical examples in particular as to how some of these existing barriers can be improved?

Professor Ashok Roy: The GP journey starts before the GP. It starts before even trying to access the building and get past reception. I think people have tried to not have misconceptions about autism—that people cannot communicate at all. People suspected of having communication difficulties are well known to services—they have come there before. They may not know they are autistic, but they can make adjustments to the approaches made by the receptionists. They can create environments that are more user-friendly. People now know that noisy, crowded and badly lit environments can cause undue distress. Some people have dealt with that by creating a separate space and more time.

We have discussed some of the problems that GPs may have in communicating. But even if the GPs do communicate and manage to get across that there is a need for a service, by the time they write to me, they are desperate on the person’s behalf to get them a service. They have no idea what is available locally. There is no local register of assets or services that they can refer to and is up to date—picking up on the earlier point about many services coming from small organisations. They are at a loss, and they get caught between a rock and a hard place with regard to mental health services, because they find that mental health services are reluctant to take on autistic people because they say they do not know anything about autism. So I think they are in some difficulty and would definitely welcome a bespoke, local, community-based autism team that had  answers and knew where to signpost people, and did not leave referrals high and dry with their patient.

Baroness Browning: Thank you. We hope the new Mental Health Bill will help to resolve some of these problems, although I suspect it will not be happening tomorrow.

Q63            Lord Scriven: Can I quickly tease out two contradictions I have heard which I just want to understand? One is the emphasis on training, which is good, but Dr Roy said that the training is not effective if you are going back to the service which does not allow you to pull the levers to change the training. So I just want to explore what you think would make that training more effective in terms of that contradiction. I am not saying that training is a bad thing, but this seems to be a contradiction.

The second issue I picked up is the one regarding autism teams and non-autism teams, as in specialisation versus non-specialisation. What is your view about where that lies, and are there good practices somewhere in the country where they have got this absolutely right? I think that is a contradiction I have also heard in the last couple of minutes.

Professor Ashok Roy: Can I come in on that and just try to touch on it? First, on the issue about training, part of our job was to set up the Oliver McGowan training, which we have now delivered for two years. People tell me that they come out all fired up and raring to go, but their whole world has remained the same. They go back to the same old service and the same old team and feel extremely constrained, and within a week or two that aura disappears and they go back to normal. I think that is a real shame. If there is a commitment from commissioners to a service model—it does not matter what the service model is—it would allow people to work differently, and at least the training would serve a purpose in strengthening their skill set. But without the service model, training will always fall short.

Going to your question about specialisation and generalisation, autism is a complex disorder. It is not something that people find it easy to understand, and that is why we rely so heavily on autistic people themselves and their families and carers to explain what the issues are. So, a case has to be made for some people in the locality who understand autism, who have access to resources or can signpost people, to provide some simple interventions and improve the quality of care through implementing good care plans. It is yet to be decided how big that team is and how specialised it is. But I strongly believe that the absence of a local autism team—I would prefer to call it neurodevelopmental, because I would like to include ADHD in that as well—would provide a good resource locally to intervene early in people’s lives.

What we pick up are burning wrecks. We pick up people who have broken down, who have had huge distress or who have attempted suicide. We should not be picking up people at that stage, but because of the threshold-based culture we live in, you have to be “bad enough” to warrant a service, and that is not the way to help people who have got a developmental disorder such as autism, where early intervention makes a big, positive difference. So there is a lack of ownership on the ground locally. Even the most well-meaning commissioner will struggle to deliver a service to a citizen without a team that is able to be a point of contact to start with.

Q64            Lord Elliott of Mickle Fell: This question builds nicely on the last question and the supplementary. What are the main barriers to the provision of effective low-level support in the community, such as peer support and befriending autistic people, and what would be the best ways to overcome these barriers? I would like to start with Mr Phillipson, please.

John Phillipson: First of all, as I mentioned earlier, the commissioners are not always aware of some of the low-level support that is available because it is provided by small charities and parent groups, et cetera, so there needs to be a better understanding of what is available in the area. I think back to the point of training; I do not want to take the conversation entirely back there. I was talking to someone the other day who raised queries about their child when he was two, suspecting that he was autistic, and he got a diagnosis at the age of 21. We need to intervene early; we know that early intervention means we can make a much greater difference, and that we can track people through time and build on the skills that they have. So there is a real case for early intervention. General training at a local level will help an awful lot of people if they understand and can personalise some of the support that they provide. That can be done through youth clubs, social groups, all sorts of GP practices, through to anywhere in society. A basic awareness means you can make adjustments, and small adjustments can make a big difference to people. So I think there is a need for a national training programme. I agree with Ashok that there is a need for highly skilled people in each area, but I think there is a need for a national programme to train teachers, doctors—people at the front line of services—so that they can better understand the needs of the people they are working for.

We need a practice framework which outlines what should be included in services, and help and resources for the smaller groups in the community so that they are enabled to support more people. We understand what makes a specialist organisation—what sort of things you build into the services.

We really need to make sure that clinicians have more of an understanding of masking, because we are meeting a lot of people who are highly stressed and burned out because they are trying so hard to live by the rules of somebody else’s game, and the impact that that has on mental health is tragic.

We need some research—I do not want to delay the whole thing—and evidence that supports the fact that this low level of intervention actually works, making a difference. Whether you are talking about supporting people towards housing, to access good healthcare, to access psychological services, et cetera, all those services through local training could be made a lot more easily available.

We need to look at cultural barriers at local levels and understand some of the different cultural issues among different groups within the community. That would make a difference and would help to conquer some of the issues around the lack of trust. But understanding the needs of people at a local level could make a huge difference.

Professor Rebecca Charlton: I will not repeat much of what John said. There were some really important points there. Some things that are important are about a wider understanding of autism and how autistic people’s fluctuating needs and spiky profiles mean they can or cannot access the support that is available. What I mean by that is that somebody may be employed and be very highly skilled in certain areas, so social care can often have an attitude of, “Well, you’re managing just fine—you don’t need that” or, “I can point you at that service and you can access it yourself”, without understanding that that might be the area that somebody needs support in. So it is about understanding that there are differences in what somebody may be able to do, and that that differs day to day. I think there is a bit of a lack of understanding of that. So you can point somebody at a service which they may be able to access themselves one day, but another day they may not be able to make that effort in order to access that service.

But the other thing that is really important is that autistic people tell us how valuable they find autism-led services and services that are being co-designed by autistic people themselves. I think that is because there is a lack of trust in health and social care for a lot of autistic people, and feeling that people like them have been involved in the development of those services gives it a greater value. That is important. I think there is a little bit of a worry about co-design: the idea that either the training we are going to develop or the services that will be designed will not be realistic in the real world within our budget constraints, and everything else.

I actually do not think that is true. We have been doing some work co-designing training for social workers with social workers and older autistic people. Quickly they came together and came up with a design for training themselves that they all agreed on. There was not a great deal of discrepancy because autistic people are completely aware of the constraints of the systems that people are working in. But what they want is clarity about what is and is not available. Just listening to what autistic people will tell you helps with that design of services and how to help support access. So it is super important that autistic people are involved in the design and access to those kind of services.

Professor Ashok Roy: Some of the issues have been covered but I want to say a couple of things that have struck me over the years. One is that there are common misconceptions about the social needs of autistic people, such as they do not want to meet other people—they want to be on their own. Stuff like that is very superficial and incorrect, actually. People underestimate and devalue the importance of social needs like a home, a job or friends. I have heard it being said, when we want to have a befriending scheme, “I am not going to pay you to go and have friends and have a cup of tea. That is not a need or a service. That is a social thing”. Not realising that interventions like that can make you properly adjust can make a huge difference to the lives of autistic people.

The third thing—this has probably been touched on before—is that autism is not a short-term problem but a lifelong challenge. There is a lack of ownership from services because they are geared to illness models. You come with a problem, you sort your problem out and you go; you are discharged. That does not work with autism. People value continuity of contact. They want to go through their painful, traumatic histories again and again because they have people in teams have not spoken to each other. That goes back to my issue of the team with longer-term connections. So these breaks in contact are harmful. Misunderstanding and misconceptions are harmful. That would then lead to defining the solutions. I do not know whether your question covered that or are you going to ask that next?

​Lord Elliott of Mickle Fell: I thought you covered it well. Thank you.

​​Lord Wigley:​ Could I ask a quick supplementary?

The Chair: If you would like to ask a supplementary and then come on to the question that you are going to ask as well, that would be great.

Lord Wigley:​ I was going to ask a supplementary to Mr Phillipson here. You mentioned cultural barriers. There are implications there. In addressing the need to overcome cultural barriers there are all sorts of consequences. Have you thought your way through where that leads you?

John Phillipson: I will just give an example. We recognised that there was a need for support in the Bangladeshi community in particular in the groups in and around the north-east. We made them our business. I was helped by one of our trustees but visited local mosques and talked to people about how we could sensitively deliver services that would be culturally acceptable to people, to the elders within the mosque, et cetera. We began to deliver programmes and now some of the women are accessing our mainstream services. All I was saying was that we need to be mindful that there can be suspicion and a lack of trust. If that is addressed reasonably, there should not be a barrier to providing services into communities.

Q65            ​Lord Wigley: If there is any more written evidence that you could send in on this, I certainly would be interested. Coming to the question I wanted to ask, what are the main barriers to the provision of effective support in the community to enable autistic people to leave and stay out of hospitals? What would be the best way in which to overcome these barriers?

Professor Ashok Roy: The things that bring autistic people into hospital are the same things that keep people in hospital and prevent discharge. It is the same old issue about lack of sufficient community support, lack of expertise, lack of facilities, and the lack of a coherent, identifiable service that offers a pathway out of hospital and into an ordinary life. This is where we end up with a problem of the number of people with autism in hospitals increasing.

Since 2017, we have been gathering data. It shows a steady increase year on year—while, out of interest, the number of people with learning disability is coming down year on year because they have coherent provision. I am a learning disability specialist and I can see the contrast between these two worlds where you have well-developed specialist teams working away, dealing with a whole range of problems, working with social care providers and partnerships, while in the autism context, that just does not exist. There is no one to take that ownership and work with it.

The other problem is that because we have this reactive model of care, you have got to reach a threshold and the thresholds get raised more and more, partly to contain the volume—I think, but I do not know. This means that people are really in a poor state when they come. They have often burnt all the bridges in the community. They are often homeless. They have often broken down with their family. It is a mess. Then to rehabilitate such a person takes a long time.

The way in which to overcome this is—I made this point earlier—there being some specialist presence on the ground which takes ownership of this problem. It does not say “You have a learning disability: go to that service” or, for your mental health, “Go to that service”. You have to start dealing with the whole range of needs and build up community capacity and a rich local resource. There is a lot of social capital that we do not use properly, so we need to agree on that team. I should really like that to be one of the recommendations that comes out of this work.

The other thing that we have done is to make sure that we take co-production seriously. Most people do not understand what autism is like if we were not autistic when we were young and grew up—if we are  neurotypical, we are neurotypical. So we need to take advice and support from all the people that know—experts by experience, peer support workers, families and trained professionals—and understand how to really make this a personalised service. Autistic people are different within that label and the level of variation is stunning but can be easily overcome through co-production.

Finally, there has to be a strong partnership between health staff and social care staff so that there is a skills network, a ring around the person that protects them from falling through the net because someone does not know what to do.

​Lord Wigley: Thank you. That was a comprehensive and illuminating answer. Would either of your two colleagues wish to add to that?

Professor Rebecca Charlton: I will come at it from a slightly different angle. What needs to be acknowledged is that autistic people have a real lack of trust in healthcare and social care. As Ashok said, they are avoiding going for health check-ups. We are not doing preventive healthcare. We are waiting until somebody is in crisis and is really desperate before they go to the doctor. That is because of a lifetime of previous traumatic experiences, having their health concerns being dismissed and a real lack of trust with health professionals. That is not easy to overcome quickly.

Also, as part of that, one of the issues is that doctors may be seeing somebody for a health condition and are not specialists in autism. There is a real risk of diagnostic overshadowing, where somebody is not certain whether an issue is related to autism or a health condition. Especially if a doctor is not an expert in autism, it would be very difficult to tell. Those doctors need support in order to understand and get good information. As part of that too, autistic people may not describe their symptoms in a way in which a doctor is used to hearing. They may describe symptoms in a slightly different way or use different language. That is then a barrier to getting the right kind of treatment. So it is about thinking about the whole person and their lifelong experiences­­—they are coming to healthcare after having avoided it because of these previous trust issues. We need preventative care and health checks for autistic people, while acknowledging the barriers to them trusting the system enough to access it. That then reduces what is happening at the crisis point that Ashok is describing.

John Phillipson: Money for commissioning is insufficient given the prevalence of autism and the increase in diagnosis. But there is a failure to invest money and to save money. I gave the example of the gentleman whom we support who was in hospital. With the right kind of support, you could prevent people going into hospital in the first place. It is very clear that the things that stop people coming out of hospital are the lack of effective co-ordinated care between health, social care, housing and the systems out in the community. So there need to be invest-to-save strategies to change the system.

We need to end the resistance for different agencies. When organisations are under pressure financially, if someone else is paying a bill there is a reluctance to take someone on to your budget: if they are nicely in hospital and safe, why, as a social care person, would I want them to be paid for out of my overstretched and overspending budget? We need to remove those disincentives to people doing the right thing.

I come again to training. It is really important that we have good-quality specifications for the kinds of services in the community. We need effective co-ordination between healthcare and social care, and better-tailored interventions that look more at personalising the support that people get to help them to move from hospital or to keep them out in the first place.

Discharge planning is not good, and we need to streamline it. There is not enough good-quality communication, and a lot of people in the system at the moment do not have a discharge date. They are just there, and the programme rolls.

I turn to the idea of having a trusted person when someone comes out of hospital to give that kind of low-level support, to help them tune into local services and make sure that the services are delivering what needs to be delivered. In the next strategy, holding local systems to account, having a clear understanding of which agency is to deliver what service, and being able to hold people to account will be really important. That is where things started to drift. People under pressure, with overspending budgets, cut corners or try to avoid doing work that they can avoid, frankly. That is some of what has gone wrong.

Q66            Baroness Pitkeathley: This is your opportunity to say what you would like the Government to do when the autism strategy comes to an end in 2026. How should the Government prioritise improving support for autistic people? I am struck by how all three of you have mentioned preventive services and getting in at an earlier stage. I note Dr Roy’s very powerful comment about people being burning wrecks by the time we get to them. Can you emphasise how we might make those interventions at an earlier stage in the next strategy?

Professor Rebecca Charlton: My main point is about focusing on prevention rather than reacting to crisis. Part of that is about training, but it is also about allowing services to give more time early on in the process in order to have a better outcome for the individual­. This will also save money: crisis services always cost more than normal care does. That has a really big effect on the individual: better healthcare and better support around them means that they have a better quality of life and a better experience.

If we focus on making services universally accessible, that benefits autistic people, but it benefits lots of other people with complex conditions and neurodiversity as well. It is about trying not necessarily to spend more but to spend it in a different way; John worded that very nicely. It is about taking more time early on in processes and giving people more support early, as a preventative measure, in order to avoid them going into crisis in the first place.

As part of that, there is a real need to improve understanding of autistic people as whole people with great skills, employment histories, lives, health concerns, housing needs and social care needs, rather than thinking just about them as having autism. People are not that; they are a complex range of different things and have had lots of experiences. So we need to increase that understanding, reduce this siloed working and focus on prevention rather than crisis.

Professor Ashok Roy: I do not know whether there is really a shortage of money. The wrecks I told you about cost a lot of money, and I seem to be given any amount of money that I ask for. One of my inpatients is now costing the taxpayer £1 million a year. So money is being spent too little, too late­—it is not on time. As John said, we need to make sure that the people who hold budgetary responsibility for autism are responsible for the whole pathway, not just bits of it, because they will then be incentivised to spend money earlier in the journey by focusing on prevention and early intervention, and then on picking up admissions and complex things like that.

The second thing I would like you to emphasise is the need for continuity of care. We cannot have start-stop care. We need continuity and, for that, we need a service model in which we invest training in the right staff working within the service model. Without a service model, the training is lost.

We have talked about accountability. We have to make sure that people are accountable to professionals and autistic people themselves. Partnership boards should be the body for that. I am saying that not because I chair one but because that is the place where the right people are together, and commissioners can be accountable to them.

Finally, because of the complexity of the condition and the personalised nature of the service that is required, co-production has to be put at the very top and bottom of all strategies.

John Phillipson: The Government should commit to addressing one of the most unacceptable inequalities in society and back autistic people and their families, recognising that they have legitimate needs that should be met. Lots of snake oil salesmen say there is a cure, and people are making all sorts of comments about whether autism exists et cetera. It exists, and the Government need to have a publicity strategy, need to make people aware and need to back autistic families in getting the kinds of services that they need.

The Government should recognise the benefits of that to the system, including economic benefits. We have an employment team that works with about 350 people a year, helping them towards employment. About a third of them go into employment and about another third go on to further education and training. The difference it makes to people’s lives is phenomenal. That is the kind of service that we should be seeing—that preventive work—rather than people moving to crisis, given the financial benefits of autistic people being assets to the companies that they work with.

Priority needs to be given to a piece of work on autism assessment and diagnosis. Do not let people wait for a full diagnosis when we know that there are things we can do now that will address many of their needs. Look to see whether there are more efficient ways that we can deal with assessment of need in the community. The Care Act should have dealt with that, but we need some better local co-ordination.

We need to develop a strategy with clear objectives and timescales, one that is clear about who is responsible and that deals with the budgetary issues that I mentioned earlier and that Ashok referred to as well. We need to remove the obstacles to people getting the kind of services that they need. In Scotland they are considering a commissioner for autism and learning disabilities, and in Northern Ireland there is a post that has been developed as a reviewer of their strategy. I suggest that one of the things that the Government could do is to have a commissioner for autism in England, or at the very least have a Minister who is responsible for ensuring that the strategy is actually delivered and that people are held to account. I have had lots of conversations with autistic people who have said, “It is great that people are having these conversations, but wouldn’t it be nice if something happened?”

​​The Chair:​ I would like to say thank you to all three of our witnesses today for some really illuminating and fantastic ideas and thoughts that have come to this session. We will send you a transcript for you to check for accuracy. We shall continue in a moment with our second evidence panel but, in the meantime, this first evidence session is concluded and the meeting is suspended briefly.