Autism
Baroness Browning
To ask Her Majesty’s Government what steps they are taking to improve the speed and quality of autism diagnoses in the United Kingdom.
Baroness Browning (Con)
My Lords, I refer to the register of my interests as a vice-president of the National Autistic Society, and to an outside interest in leadership training in the NHS. I should also declare that I am patron of Research Autism and the Autism Diagnostic Research Centre in Southampton.
Why is there a need to improve both the speed and the quality of a diagnosis in autism? It seems to me a pretty straightforward question, and that the answer is rather obvious. Speed is very important, particularly when one looks at some of the more complex cases, but in order for that to be processed and for someone to be referred to the right person, it requires sufficient people to be trained both for children and adult diagnosis. A recent case was brought to my attention of a 50 year-old man in full-time employment in Kent. It has taken two years for him to receive a diagnosis.
The latest Public Health England waiting times show that from the first referral to the first appointment—in other words, not the whole process of diagnosis but that very first step—takes up to 95 weeks in the south-west and, in Yorkshire and Humber, 84 weeks. We are looking at a postcode lottery. I am aware that in some areas the situation is better than that, but around the country we see people waiting for far too long. The quality of the diagnosis is important, too, as well as what happens after it is given. Autism, as we know, is a lifelong condition, and the diagnosis is the passport to an improved quality of life, including support not just for the autistic person but for parents, siblings and carers.
There are still too many problems at each stage of what the NHS refers to as the “pathways”. It is terminology that I absolutely hate but I am going to have to use it today, because I think everyone will know what I mean by it—that is, the various steps taken from the time that someone presents, or someone is noticed or a problem arises and somebody along the line says, “Well, could this be autism?”. The National Autistic Society has done a lot of work on this, and its recent assessment is that it is very important that every area has a clear route, from raising concerns to being referred for a diagnosis, having the assessment and then getting the care and support that necessarily must come afterwards.
Sometimes people get a referral only after visiting their GP multiple times. This can be down to poor GP awareness as well as people being wrongly diagnosed with other conditions such as anxiety, depression or obsessive-compulsive disorder. There is a need for GP training and for GPs to become more established as the important gatekeepers that they are. I am pleased to welcome the initiative of the Royal College of General Practitioners. Two years ago it set up a clinical priority group under the chairmanship of Dr Carole Buckley, who has been doing some excellent work around the country. We need GPs to be aware enough to make an appropriate referral in a timely way, together with social workers, teachers, educational psychologists and in fact many others—not just professionals but people who have an awareness and understanding of autism, who can say, “This could be autism”. If that is the case, it needs the appropriate referral.
That is particularly so now with girls as well as boys. Ten or 20 years ago, girls were reckoned to be about one in 10 of people diagnosed with autism. That perception has changed quite dramatically in the last five to 10 years. We now know that there are a lot more girls on the autistic spectrum but they often present differently from boys and therefore diagnosing them requires specialist knowledge. It is a communication disorder, of course, which means that very often the way in which girls communicate can be different from the way that boys communicate. That can raise challenges in terms of the diagnosis.
Across the country there is wide variation in the length of time that people wait for an assessment after being referred. NICE guidance says that it should be no longer than three months, which the Government have repeatedly stated that clinical commissioning groups should be meeting. They are not meeting it. I say to the Minister that the Government need to be far more proactive with clinical commissioning groups. Adult data show that the average in England is 13 weeks while in areas of the south-west, as I said, it is as long as 95 weeks. This is from the 2014 local authority self-assessment on the Autism Act.
It would be very helpful if the Government could collect diagnosis waiting times for adults and children centrally and hold CCGs to account on meeting the NICE targets. One of the other problems about these waiting times is that there is no true picture of the number of people being diagnosed or the number who are waiting, which leads to a lack of provision to cope with the numbers and the reality. It would be very helpful across the piece for health, education and social services to have a much better feel for how many people there are, where they are and what the timescale is that they are working to.
Once people get a diagnosis, too many report that they are not getting the support they need, including in those essential areas of mental health, speech and language therapy and social care. It is of course included in the Autism Act’s statutory guidance for adults, but autistic people tell us that, far too often, this is not happening. What will the Government do to make sure that NHS England’s work under the Mental Health Task Force to create a care pathway for autism will include post-diagnostic support for all autistic people and will hold areas to account?
There is another area which the Government need to address urgently. Part of the reason is, I believe, the lack of leadership within NHS England on autism. Currently, the lead for autism is the clinical lead for learning disability and autism. It is quite true that there are people who have a dual diagnosis, but the lead sits within the transforming care team, which of course leads important work on closing inappropriate in-patient units for people with complex needs. But there is a strong case for a national clinical director for autism to drive progress within NHS England across the autism spectrum. Clinical directors exist for other conditions including learning disability, dementia and mental health, and we have seen great strides forward in areas where there is a dedicated clinical lead. I ask my noble friend again today: will the Minister support the call for NHS England to develop leadership on autism, because that is where the driver is and where it could so improve the situation?
I also draw my noble friend’s attention to the question, which I have mentioned already, of the implementation of the Autism Act 2009. When I was in another place, I was delighted to have the opportunity to be part of the team that took the Autism Bill through to become an Act. Apart from mental health, it is the only medical condition which has its own Act of Parliament. That should be a clear indicator of how important Parliament considers this condition.
However, I say to my noble friend that I am concerned. Despite the fact that it was written into Section 3 of the Autism Act that local authorities and NHS bodies have a duty to act under guidance, I get the impression that that part of the Act is not being implemented as robustly as it should be by the Minister.
I remind people of what that very important part of the Act says. It says that,
“an NHS body is to be treated as if it were a local authority within the meaning of”,
the Local Authority Social Services Act 1970, and that,
“the functions of an NHS body”,
mean that the Minister can call it to account if is not implementing guidance as it should. It gives statutory backing and power to the Minister—on NHS bodies and of course on local authorities—to make sure that this guidance is being properly implemented.
My noble friend may want to write to me on this. I would like to know just how many times the Minister has exercised Section 3 of the Autism Act, since it was put on the statute book, with either an NHS body or a local authority. It seems that this should be used by the Minister to drive forward the very issue that we are talking about, among other parts of guidance—to make sure that people not only get their diagnosis in a timely way and that it is an effective diagnosis in terms of its quality, and that the follow-up on the services identified by the statutory guidance for the Autism Act is implemented as well.
I am very grateful to colleagues across the House who have attended this debate today and I hope that when she sums up, my noble friend will be able to reassure us.
Lord Touhig (Lab)
My Lords, I am grateful to someone whom I am proud to call my noble friend—the noble Baroness, Lady Browning—for securing this debate. She is a formidable, constant and doughty champion for people and families with autism.
When a couple whom I have known for many years told me that they suspected that their child was autistic, I advised them to keep a diary along the lines suggested by the National Autistic Society, of which, like the noble Baroness, Lady Browning, I am a vice-president; I must declare my interest. They did this and took the diary to their GP, who tossed it aside and said, “I have seen these sorts of things before”. I became rather angry, and when I discovered that the senior partner in the practice was someone I knew, I rang him up and, quite bluntly, said, “Pull your bloody finger out and get this child a diagnosis”. That should not have been necessary but in so many cases, the hardest part about living with autism is getting a diagnosis in the first place.
The National Autistic Society’s research indicates that adults have to wait more than two years for a diagnosis and children are waiting three years, even though the NICE guidelines clearly state that the time between referral from a GP and diagnostic appointment should be three months. A diagnosis begins to unlock the door to getting support and help and to gaining a better understanding of an autistic person’s needs, yet there is often a barrier put up by the National Health Service and those working in the service. I am sure that it is not meant that way, and that those working in the health service would be horrified to think that it is, but too many in the NHS erect a barrier —for whatever reason—prolonging the time that it takes to get a diagnosis. That barrier must come down. The diagnosis is the first step for autistic people, enabling them to access the right support and begin a better quality of life. A survey carried out by the National Autistic Society revealed that 61% of people who responded felt relieved to get a diagnosis, while 58% said that it led to them getting new or more support.
For many with autism, it is the first chance to get an insight into why they feel and act differently. Naoki Higashida, a young Japanese autistic boy who wrote The Reason I Jump—a book which I have quoted a number times—posed a number of questions about people with autism. He asked, “Why do people with autism talk so loudly and weirdly? Why do people with autism do things they shouldn’t, even when they are told not to do them a million times? Why do people with autism take ages to answer questions?” People with autism ask these questions of themselves, often not getting an answer or an understanding. Not until they have a diagnosis does support and understanding of their needs follow.
The families of people with autism often say that delays in getting diagnoses led to the development of serious mental health problems, both for the individual and for their family. It is therefore important that people with suspected autism are able to access a timely diagnosis wherever they live in the country. When, in February 2015, I asked a series of Written Questions about autism diagnosis, the then Minister, the noble Earl, Lord Howe, replied that data on:
“The number of children diagnosed with autism is not collected centrally”.
However, if we do not know the extent of the need, how can we really respond to it properly? The best thing would be to create an autism register to be registered with every GP. The National Autistic Society, in its autism diagnosis crisis campaign, is calling on the Government and the NHS in England to take this action; already, 12,000 people have signed a letter in support. Surely, the NHS should collect, publish and monitor key information about how long people are waiting for a diagnosis and how many people’s autism is known to their GPs.
The NHS should ensure that waiting time standards on mental health, currently in development, reflect national guidance and that no one waits longer than three months between referral and being seen for diagnosis. The Government must share in this commitment, ensuring that the NHS in England meets its aims. Timely access to an autism diagnosis should be written into the Government’s mandate to the NHS in England.
I am conscious that some people might want to speak in the gap, so I will cut my remarks accordingly. I will end by sharing with the Grand Committee a case study that expresses more eloquently than I can how an early diagnosis might have made a huge difference to the life of one young person. The names are changed to protect the families’ anonymity. Jane is 50 and Michael, her husband, is 51. They have a son, Dan, who is 15 and they live in the south of England. It took Dan’s parents almost six years to get a diagnosis from the point where they started seeking an autism assessment, although they had started looking for answers two years before that. During those years, his parents were repeatedly told by professionals that he was not on the spectrum. The diagnosis happened only when they went private to get a diagnosis. Dan was diagnosed with autism only last year, six years after his parents raised the issue of autism with professionals and eight years since they first sought help. The delay had a huge impact on his health, his mental health, his education and his family. His mother wrote that:
“With the help of the firm diagnosis, I was able to fight successfully to get funding for Dan to go to an independent school which specialises in children with various difficulties, including autism. The school understands anxiety and has small classes, so Dan can learn without stress. The impact on Dan’s education of not receiving an earlier diagnosis cannot be overestimated: he lost four years of his school education and is having to repeat a year so that he can take his GCSEs. He is a bright boy and loves learning, so he is delighted to be back at school again. The delays also had a huge impact on Dan’s mental health, as well as our family’s … What makes me really angry is that I know there are plenty of children who still don’t have the help they need”,
in order to fulfil their life potential. We have an opportunity in Parliament, as politicians and as Ministers, to do something about this. We have an opportunity to make a difference. That is why we are here. I hope that the Government are listening; I am sure that they are, but we really have to keep pressing for some improvements.
Lord Addington (LD)
My Lords, it is a pleasure to be backing up the noble Baroness on this subject. If we are breaking the rules and saying “my noble friend”, then to hell with the rules, basically.
We are returning to a subject on which I feel there is going to be a tremendous amount of agreement; the downside is the fact that we are having to say it again. We have had to say this very often. The main thrust is that we have specific legislation that backs up other general legislation, giving rights to these people and responsibilities to the state that are simply not being enacted. That is the long and the short of it. There are a series of rights and, as the noble Lord, Lord Touhig, has just pointed out, the people who get them are the ones who fight and get it recognised. There is an old cliché about anyone who has been involved in any part of the disability movement: if you want to be a successful disabled person, choose your parents very carefully. I think that the best combination is a journalist and a lawyer—a person who will tell you about the law and someone to tell those who are not enacting the law publicly that they have failed. I have seen over and again that the person who shouts, with the right language and in the right way, gets their rights. The rest do not.
The experiences of autism are so similar to the world that I come from—that is, of dyslexia—that it is not worth setting out any differences between them; the principle applies to both. Then we have the joys and delights of co-occurrence of disability, which is very common. All these things come down to the fact that we have a series of pieces of legislation that are not being enacted correctly, and we have to drag people into enacting them.
Before I move on to my main point, I want to back up one point that the noble Baroness made. All these hidden disabilities seem to suggest in their initial stages that the males with the condition greatly outnumbered the females. Then a combination of practice and new social mores when looking at people showed that this was not the case, or at least that the discrepancy was not nearly as great as had previously been conceived. I hope that the Minister will have some way of looking at that and saying exactly how often this occurs. It is quite clear in all these hidden disabilities that the female of the species is much better at keeping its head down, not getting spotted, not causing trouble and not attracting attention. If we can look at that, we might start to get an idea of the true picture because it is also true in all these cases that the male who follows that example is ignored. Can we have a look at that type of behaviour?
I want to draw attention to something that the noble Baroness, Lady Browning, mentioned in passing: education. At the moment, when it comes to special educational needs, a teacher who is going to receive dozens of groups and several predominant groups might receive an afternoon or a couple of hours on the subject. I met a young man, introduced to me by a volunteer in my office, who had missed his special educational needs unit because he had had a doctor’s appointment that day and was under no pressure to go back and take it. Two hours. Could noble Lords learn to spell dyscalculic, dyslexic or autism, if they did not know already, in two hours, even if they do not have one of those conditions? I rather doubt it. Effectively, what we seem to be assuming in teacher education is a slap in the face.
Remember how much time people spend in classrooms. Remember how much time those at the higher end of the autistic spectrum, those who do not have the glaringly obvious problems, will spend there. There is so much opportunity for a teacher who has at least some awareness training to be able to say, “I think this child has a particular problem. They will need to be told about it and they need strategies in their learning and social behaviour to enable them to function in society”. Even if you do not go to a formal diagnosis but have some awareness that you might be there, just think about how much potential that could release. Think about how you might be able to get somebody in a position where they could handle further education better, or higher education. We have passed Acts and done things that enable people to get through this. We give them extra money, extra time. We have just passed things that gave them this ability. If you do not identify and support in the teaching staff, you are missing the chance to make a person aware that they are doing this and you will not be able to say, “You need to take a slightly different teaching strategy to get the best out of this person and you will get them through”. How much waste is actually built into the system there?
Is this a wonderful revelation from me? No, it was first put forward in the Lamb review. I think that was in 2009; I cannot remember off the top of my head. The difference between dyslexics and autistics is that we do not like facts and figures in nice, straight lines. I do not know how co-occurrence happens. It is an established principle that we have badly trained teachers in this area. Unless we can get in there, we will ensure that we do not identify them, and, even if we have identified, we will make sure that that teacher does not know how to adapt the lesson to get the best out of it. This is made even more absurd when we take on the fact that they have a legal duty to teach that person.
Effectively, in this huge part of a person’s life, teachers at the moment have a legal duty to do something which they are not trained to do. That is a disaster for anybody who has problems with learning patterns that are not of the mainstream. Autism just happens to be one of the more glaring examples.
Lord Warner (Non-Afl)
My Lords, I am sure we are all grateful to the noble Baroness, Lady Browning, for giving us the opportunity to debate this important subject and for sharing with us her expertise and experience in this area. Despite my four years as a Health Minister, this is my debut on this subject. That probably indicates how hidden the subject of autism often is. My involvement arises from my experience with my six year-old grandson, who is on the spectrum and probably suffers from Asperger’s—I should declare this interest.
Normally, I never bring family matters into discussion of public policy in this House but, although I have not formally consulted my grandson about using his example, I am sure he would approve of my doing so today. He likes to star in stories about himself and his alter egos. One of his favourite alter egos is Seal, so I shall describe him as Seal for the rest of this speech.
My experience is that Seal has been jolly lucky with the individuals that he has encountered on the journey that he has travelled so far. That has nothing whatever to do with any NHS system. The NICE guidance could have been written in Mandarin Chinese as far as Seal’s NHS encounters go. What has happened is that he has never been through a CAMHS system and never really been referred by a GP, yet he has progressed through the system. Seal is a quirky, infuriating, endearing, courageous, vulnerable, obsessive, controlling, physically strong little boy who, for some of the time, is great fun to be with and, at other times, would drive a saint to distraction.
If, as a family, you have a diagnosis, you can learn how to cope with the predictable unpredictability of the young person’s condition. Perhaps more importantly, you can help the child to learn coping mechanisms for processing and dealing with this very strange world that he inhabits. Seal now knows that he is a very different person from the children around him in his mainstream school, but he also knows that there are a number of adults and other children who are trying to help him. Without that diagnosis and its follow-up, Seal would almost certainly not be in a mainstream school or have many friends his own age. Whether his family would have been able to cope with him must also be very open to doubt.
Seal is where he is not because of the NHS but almost despite it. An energetic nursery school manager pressured a local children’s community team to observe him and diagnose him. That team produced an excellent profile of him, and when he moved house the team did the right thing and passed the assessment to the GP practice in his new area. The practice promptly filed it and did nothing. Some time later, what I like to describe as a “House of Lords intervention” ensured that he was seen by a community paediatrician, who then worked with the school that Seal was placed in and produced a diagnosis. Seal has the services that he needs because of that school’s excellent SENCO, not because of the NHS. The school drove the preparation of an education, care and health plan and ensured that the community paediatrician gave a clear diagnosis. That has led to this child being in the system; the NHS has contributed very little to getting him into the system. It has taken three years, but I have to say that his experience has been very different from what I hear from many parents of children with autism who Seal and his family meet in the local support group.
I have told this personal story to illustrate the lack of any kind of easy-to-use system for many of the parents of autistic children. I have read the NICE guidance, and they are worthy, professional documents. However, I suspect that their recommended timescales for diagnosis are observed more in their absence rather than in the actual experience of parents. Relying on a GP referral to CAMHS is simply not a credible system unless there is to be a massive investment in GP training and CAHMS. Building alternative routes through nurseries and schools, and accessing community paediatricians, might offer the prospect of speedier diagnoses in some areas.
That does not mean I want the NHS to be let off the hook. It should certainly be capturing more data and comparing local health areas on the total time taken to secure an autism diagnosis. The NHS would be helped by working with local education systems if there were more progress on a common identifier for children who need both health and social care services. The Minister might like to give us some advice on how much progress is being made in this area, where change is long overdue. Will she also ask NHS England to separate the commissioning of autism services from learning disabilities, starting especially with children? If she cannot answer my questions today, I would be grateful if she could write to me.
Baroness Rock (Con)
My Lords, I add my thanks to my noble friend Lady Browning for bringing to this House such an important debate.
People on the autistic spectrum perceive the world differently from others. They find the rest of us strange and baffling. Why do we not say what we mean? Why do we tolerate such a confusion of sensations of light, smell, sound, touch and taste without screaming? Why do we have such complicated emotional relationships? Why do we send and receive so many social signals to each other and how do we make sense of them? Why are we so illogical?
More than 700,000 people in the UK today are currently diagnosed with autism. If you include their families, autism touches the lives of over 2.8 million people. I am one of them. As the mother of a child with special educational needs, I have experienced at first hand the challenges and stresses of raising a child who sees the world differently and finds frightening the things that we take for granted. However, and I really cannot emphasise this enough, I have also experienced the rewards and joys of raising a child who is atypical and unique, and who brings so many unexpected qualities that surprise and enrich our lives. We are lucky; we managed to access the right support and the right schooling.
Why is speed and quality of diagnosis so necessary? It is simply because a diagnosis clarifies special educational and behavioural needs and the means to get those needs met, and gives entitlement to services and financial support. It is the first concrete step on a long journey. We are making progress. Autism diagnosis has increased by a factor of 25 in the last 30 years, but still only two-thirds of children and one in 10 adults with autism have a diagnosis. However, a critical question is: how can parents recognise that their child is on the autistic spectrum? Every child presents differently, and children with the same label may be more different than they are alike.
Early-years educationalists and childcare workers have the insight and ability to recognise communication and behavioural issues, and therefore can take more responsibility in helping parents to assess their child’s difficulties and enable specific diagnosis on a timely scale. I am not advocating that every teacher or childcare worker needs to be a neurodevelopmental expert; on the contrary, it is their collective experience and observation of children with difficulties in school and their close communication with parents that puts them in a unique position. With training, they can enable parents to articulate their concerns and to have those concerns acted upon, wherever that might lead, whether it is diagnosis or other support.
For many parents, it is difficult and frightening to comprehend what is “normal” behaviour and what is a cause for concern that needs professional input. In my case, my child was my first-born and I had no basis of comparison. It is truly overwhelming to be in that position, but harnessing the good sense of educationalists early on is a really important resource. We need to acknowledge that they are a crucial part of the diagnostic process. As professionals, they have an empathy and perspective that can be nurtured and encouraged to support parents. Timely identification of social communication problems puts parents and children on to specific autism pathways, as my noble friend Lady Browning mentioned, which can then initiate and expedite diagnosis.
The impact of living with a child with autism can be devastating for many families. The high incidence of marital breakdown where a family has a disabled child speaks for itself, and there is growing concern about the mental health costs to siblings and other family members. Being the parent of a child with autism can be one of the loneliest places in the world. Acknowledgment and affirmation of the valuable contribution of early-years educationalists and childcare workers towards supporting parents to get the right diagnosis will lead to the right help. This transforms lives.
Baroness Hollins (CB)
My Lords, I refer to my interests in the register, including my chairmanship of an expert reference group on workforce learning disability services, and congratulate the noble Baroness on this debate.
My own expertise with autism as a psychiatrist is with the 30% of people with learning disabilities who also have autism. Some people with autism have a learning disability but most do not, which is a very important point to bear in mind. The Royal College of Psychiatrists joins the National Autistic Society and others in their concerns that the later someone is diagnosed, the worse it is for the quality of their life.
According to the National Autistic Society, 70% of autistic adults say they are not getting the help that they need from social services, and at least one in three autistic adults experiences severe mental health difficulties due to a lack of support. Without tailored support, people with autism can find it difficult to communicate their needs and make good use of mainstream health and social care services. This increases the pressure on families and carers and creates pressures within primary care and mental health services as they struggle to meet people’s needs, often when they are undiagnosed or misdiagnosed.
Individuals with the diagnosis, and their families, can feel overwhelmed without help and understanding. The absence of a diagnosis may mean that families are not communicating in the best way or that people are taking medication that is not needed and may be harmful. We already know that people with autism are vulnerable to mental health problems, with late diagnosis increasing this risk, and that 70% have at least one other mental or behavioural disorder, while 40% meet the criteria for two.
One man with autism, Chris, who waited until adulthood for a diagnosis, told the National Autistic Society that in his view before his diagnosis his needs were never met, and at times he felt suicidal. Having a diagnosis helped him to reach a place of acceptance and opened doors that were previously closed to him. He said that without the diagnosis he would have taken his own life.
We know that people with autism are also vulnerable to physical health problems. A recent study published in the British Journal of Psychiatry revealed that people with autism die 16 years earlier on average compared with the general population, and that suicide is the second commonest cause of death for them after cardiovascular disease. One problem with the study was that it was not known how many also had a learning disability, a known risk factor itself for earlier death, for which there is good research evidence.
We know that without proper recognition and diagnosis, children with autism may not be in the appropriate school environment and are at risk of being bullied, leading to isolation, depression and anxiety. Behavioural difficulties, if not properly understood, can put them at risk of being suspended, with profound implications for their future. We know that only 15% of people with autism are in full employment.
Autism, as we have heard, is a multidimensional neurodevelopmental disorder. It presents differently in each person, and diagnosis requires a multidisciplinary team to accurately decode behaviours and observations which may overlap with other conditions. There is no definitive medical or genetic test for autism.
There might be gender differences in how autistic traits present and are interpreted. The stereotype of a person with autism is an obsessional person somewhat locked into themselves; but girls present with more subtle difficulties. While in conversation they might be able to take turns to speak, make eye contact and engage in small talk, but they frequently do not understand the subtext. They tend to be better at social formatting, cutting and pasting someone else’s behaviour and trying to make it their own without understanding why they are doing it. There is no research on the number of women on the autistic spectrum but clinicians now suggest that there are probably a significant number of undiagnosed cases referred to adult mental health services for conditions such as depression, OCD, eating disorder or self-harm. Staff at an eating disorder clinic in Birmingham recently identified that between 60% and 70% of women in their 20s attending their clinic had undiagnosed autism.
A teacher at Limpsfield Grange School in Surrey, a school for girls with special educational needs and communication difficulties, noticed that a high percentage of the learners were showing behaviour on the autistic spectrum. Some of the girls were helped to write a book, M is for Autism, which asks the reader to view the world through the eyes of a girl with autism—for example, not having friends, not fitting in and feeling worried all the time.
Autism also presents differently in adults and children. People are less closely observed after leaving school, and many adults learn to limit their autistic behaviour. They face numerous misdiagnoses and potential iatrogenic harm before getting correctly diagnosed with Asperger’s or autism. There are also issues for older adults, whose autism might come to light at a time when they lose a spouse or in retirement because of their inability to adjust, or behavioural difficulties that present.
The Royal College of Psychiatrists expresses concern that there are insufficient trained staff to carry out a diagnosis. In order to tackle this, it has developed a quicker aid to diagnosis for psychiatrists and a training package. It is looking at how a basic essential knowledge of autism can be added to the training of all psychiatrists to ensure that general psychiatrists have knowledge and skills about autism in their core skillset. On its website, there is good-practice guidance on diagnosis.
Part of the conundrum is that autism has no cure and no single or clear causation. Prevalence is probably going up, and diagnosis certainly increases the number of children and adults identified with autism. Every person with autism is different, but receiving a diagnosis is a crucial step in their journey. For many people, diagnosis leads to better understanding of individuals for their families, as well as for education, health and care services and employers. For many people, diagnosis leads to adjustments in expectations, education and care. For others, more specialist support and long-term interventions are needed. The growing awareness of issues faced by people on the autistic spectrum is welcomed, but there are still too many people whose needs go unrecognised, misdiagnosed and unmet. We have made strides in the right direction, but we need to speed up the process. Will the Minister commit to sharing examples of good practice across England, and encourage areas that are lagging behind to implement it?
Lord Wigley (PC)
My Lords, I will intervene in the gap in 60 seconds flat. I thank the noble Baroness, Lady Browning, for her work over many years in this area, and I congratulate the noble Baroness, Lady Rock, on her very moving speech. I declare an interest—technically lapsed—as former joint patron of Autism Cymru, which was brought to an end last year for the simple reason that a new Welsh Government-sponsored strategy was taking over and is very relevant to the issues that we are discussing today.
In talking about these matters as an attendee of several meetings and conferences of Autism Europe, it has become clear to me that there is a great jealousy among many European countries of the initiatives that have been taken in the four nations of the United Kingdom. There is significant envy about these. However, I flag up one warning from our experience in Wales: it is one thing to have a strategy on paper; it is something else to have it rolled out evenly in every community that needs those services. There need to be the resources for the local authority and the medical fraternity in order to do the job. That is what my appeal will be: to make sure that good theoretical policies work out in practice.
Lord Hunt of Kings Heath (Lab)
My Lords, it is a great pleasure to comment for the Opposition in this very important debate, on which I congratulate the noble Baroness, Lady Browning. She made a very persuasive case for the early diagnosis of autism. She made the point that currently, although we have seen an improvement, there is a huge variation in practice in many parts of the country. I come back to my noble friend Lord Wigley’s comment that it is good to have a strategy but you need to have an implementation programme to ensure that there is consistency across the country. The debate has shown that at the moment there is a postcode lottery and widespread inconsistency in the availability of diagnosis and access to treatment. The principal question for the Minister is what action she can take to ensure that clinical commissioning groups are kept up to the mark and monitored over the issue of diagnosis. The issue of transparency, and the availability of comparative information so that individual CCGs can be monitored and held to account, is crucial in this area.
My noble friend Lord Touhig suggested that a difficulty in getting diagnosis may in essence be a rationing tool, in that if you do not get a diagnosis you do not get access to treatment. If that is the case, that is entirely unacceptable. The same issue applies to access to treatment. If we are to understand the challenges that we face, we have to have local and comparative information about the difficulties of access. I hope that at the very least the Minister will take this away and consider with her colleagues how that might be brought about.
The noble Baroness, Lady Browning, said that we ought to have one single national clinical director to focus solely on autism. I very much agree with that. However, the current set-up of national clinical directors is wholly unsatisfactory. They are given very little time and virtually no support, and it is not fair to ask them to do what they have been asked to. The noble Baroness, Lady Hollins, mentioned her membership of expert groups. She may well know that NHS England has a consultation, which I think has now finished, on the membership of clinical reference groups, which are crucial groups that advise NHS England on policy development. My understanding is that the proposals that were sent out on 9 February proposed reducing the numbers of those CRGs and their clinical members. That is a matter of great regret and I hope the Minister will be able to comment on it.
Resources have been mentioned. The noble Lord, Lord Prior, said recently in response to an Oral Question about the excellent Mental Health Task Force report that £1 billion per annum will be spent by 2020. The problem is that that is not ring-fenced; it is part of the overall allocation to the NHS. As we know, the NHS is facing very severe financial pressures, and I know no one who believes there is any chance whatever that that £1 billion will actually be spent on mental health services.
I end by referring to the excellent Autistica report that came out last week. It shows that people with autism are more likely to die at a younger age compared with the general population. It makes a strong argument that we need to build the research and knowledge base; that the learning disability mortality review should include a new national autism mortality review; that standardised mortality data about all autistic people should be collected nationally and locally; and that the Department of Health should include preventing premature mortality of autistic people as a key outcome in the 2017-18 deliverables. Will the Minister’s department take very careful note of the Autistica report and perhaps in due course let noble Lords who have taken part in this debate know what the outcome of those considerations might be?
Baroness Chisholm of Owlpen (Con)
What an excellent debate we have had this afternoon. As is normal, I am going to have to try in a short time to get through answering all the questions, which have been so incredibly interesting. I am grateful to my noble friend Lady Browning for raising this important issue. I pay tribute to her many years of support for those who have autism and indeed to the support in the contributions of all our speakers.
Parents can find themselves in a frightening and bewildering place, first, when they sense that there is something wrong with their child and, secondly, once they are given a diagnosis. Autism is particularly bewildering, partly because it can manifest itself in so many various ways. Obviously, as my noble friends Lady Browning and Lady Rock, and the noble Lord, Lord Touhig, said, a timely diagnosis of autism is essential to ensure that the relevant health, care and educational interventions can be implemented for the maximum benefit. The noble Baroness, Lady Hollins, also mentioned that if there has been an early diagnosis, problems can be sorted out before they become too desperate. It is essential to ensure that families do not spend a long time in limbo, uncertain of how best to support a child or young person. Indeed, the same can be said for staff in schools and other settings. As the noble Baroness, Lady Hollins, mentioned, a diagnosis may make a massive difference for adults if they have struggled through their life without support. As our understanding of autism and its impact has improved, we have become better at early identification and more nuanced approaches to therapeutic interventions.
NICE has recommended that following a referral for a clinical assessment, a person should wait no longer than three months before the assessment process begins. NICE also highlights that given the complexity of autism, this process cannot be rushed. This is a challenge for the NHS and its partners. There is no doubt that in some parts of the country the demand placed on services, often through the sheer weight of numbers, means that they can struggle to meet the standards. NICE guidelines recognise that there is evidence of girls being one of the groups at risk. It is looking into better guidelines on this issue.
I will set out some actions that we are taking centrally to deliver improvements in how the NHS and its partners are able to deliver timely diagnoses. Diagnosis is of course a process which should be driven locally by clinical commissioning groups, working in partnership with their local authorities, to develop the right pathways to assessment and packages of care which result from a diagnosis. The noble Lord, Lord Hunt, and my noble friend Lady Browning talked about meeting targets and holding CCGs to account. The Department of Health and NHS England, along with the Association of Directors of Social Services, are visiting CCGs and local authorities. These visits aim to develop a better oversight of the challenges in securing timely diagnosis across all ages. They will consider data on waits, which are so essential, and the design of pathways—as a nurse, I really dislike that word, as the noble Baroness does, but I cannot think of a better one to use. They will also consider many of the critical issues raised so that they can make an effective assessment of how information is made available to the public, the links to mental health services and social care services, how initial referrals are triaged, and who provides leadership locally for autism support. NHS England will complete its work in April and then report to the cross-government autism programme board.
Effective commissioning must start with effective identification of needs. The Department of Health issued guidance in 2014 for health and well-being boards on children’s complex needs, including autism, which provides key insights to effective assessments. The noble Lord, Lord Warner, mentioned that there should be specific commissioning for autism to take it away from other learning disabilities. I will write to him further on that but, as the noble Baroness, Lady Hollins, suggested, it can be difficult to separate the two when symptoms and behaviours can so often overlap. Quite often with diagnoses, somebody appears with a different kind of symptom than a natural autistic symptom. That can perhaps lead to finding that the child is also on the autistic spectrum, so I am nervous about separating the two.
The noble Lord, Lord Addington, spoke about higher education. It is essential that school staff are able to recognise and meet the needs of children on the autistic spectrum. The Department for Education has funded the Autism Education Trust to provide training for early years, school and further education staff across the spectrum of need. To date, the AET has provided training for around 87,000 education staff. I know that the AET is aiming to reach a key milestone of 100,000 trained staff in the summer of this year.
In brief, local authorities and CCGs are required to work together in joint arrangements to assess the needs of individuals and develop education, health and care plans designed to focus on the outcomes that will deliver the biggest impact for the child and their family.
Raising the skills and awareness of the workforce is of course key to diagnosis. The Department of Health has provided financial support to the Royal College of General Practitioners to make sure that there is a priority programme on autism, with practical work on autism awareness and training for GPs. This will enable people who may have autism to be supported more effectively from the start of their assessment process.
Last year, the Department of Health also provided funding to a number of organisations, including the Royal College of Nursing, the Royal College of General Practitioners and the National Autistic Society, to upgrade their autism e-learning training tools and materials. The department has also funded the development of two e-learning tools which can help people working with autistic children, young people and young adults to provide better services.
As people with autism are susceptible to mental health conditions, it is also worth noting that this Government are driving forward the transformation of children and young people’s mental health services, improving access and making services more widely available across the country. The transformation programme, backed by additional investment of £1.4 billion over the course of this Parliament, will deliver a step change in the way that children and young people’s mental health services are commissioned and delivered.
Also very important is the work done under the auspices of the 2014 Think Autism strategy. There are three key new proposals in the strategy that I think will make a difference. Think Autism community awareness projects will be established in local communities, and there will be pledges and awards for local organisations to work towards. The Autism Innovation Fund provides funding for projects that promote innovation, local services and projects, particularly for low-level preventive support.
The noble Lord, Lord Touhig, mentioned better data collection, and this is indeed very important. There will be more joined-up advice and information relating to services, including a new way for social care staff to record a person’s condition. There is also a commitment to make it easier for people with autism to find information online, including information about how their local authority is performing.
The noble Lord, Lord Hunt, mentioned finance, which is always at the top of everything. The Government have allocated £4.5 million for the Autism Innovation Fund and the autism community awareness programme. This funding has been announced for one year.
What will make an enormous difference to diagnosis is effective local engagement with parent forums and other groups. That is critical to CCGs being more effective in meeting complex needs locally. They have expertise and experience, and they can interpret and provide a voice for their children.
We have heard today from my noble friend Lady Rock, very emotionally, about the difficulties she had with the diagnosis of her child. We should listen much more to what parents are saying. They know if there is something wrong with their child, and when they go to see a GP they need to feel that that GP is going to listen to them. Parents are often co-ordinating and managing a complex range of services and interventions as part of their caring role. NHS England has undertaken considerable work in this field to promote the value of engaging with parents.
I know I have left out several things that various noble Lords brought up and will make sure that I get back to them on all those issues. The noble Lord, Lord Touhig, asked whether Ministers will work with NHS England to commission an autism register in GP records. It is felt that a register per se is not necessary to their primary care work in supporting people with autism. GP practices already maintain registers for people with learning disabilities under the quality outcomes framework.
Commissioners are now beginning to realise that awareness, diagnosis and support needs to be of a high quality across the country. It is debates such as this today, though it was far too short, that keep autism firmly on the radar. I thank all noble Lords for their participation.