My Lords, I am grateful for the opportunity to introduce this debate on autism, and I am encouraged that so many noble Lords will be speaking this evening.
Before making my substantive points, I should declare that I am a patron of Research Autism and would like to thank it and Autism Speaks for the briefing and material that they provided in preparation for this debate. I also want to acknowledge the sterling work that all the voluntary organisations are doing to raise awareness of autism and to support those with this condition, as well as the work of the All-Party Group on Autism.
Autism is not rare. The term “autism” describes a range of developmental conditions arising out of brain differences affecting more than 500,000 children and adults in the UK. The symptoms of autism vary considerably but they always affect instinctive social behaviour and communication, which can lead to severe stress, isolation and a failure to achieve academic and other potential. The condition affects individuals in different ways. Some are able to lead everyday lives while others require special support. It is hard to create awareness of autism as people with the condition do not look disabled. When meeting someone with autism it is not always immediately obvious that they have a disability because there are no outward signs.
Autism is a hidden disability. Consequences can be devastating. The hidden nature of the condition can lead others to make judgments about the behaviour of people with autism, seeing their actions as wilful or malicious. Difficulties can flow from these judgments which can lead to people with autism being ostracised or bullied, or in some cases facing prosecution. Research indicates that one in 100 children is affected by an autistic spectrum disorder and 40 per cent wait three or more years for a diagnosis. It is still difficult to get a diagnosis as an adult if an individual has been missed as a child. Provision is variable throughout the country. Around two-thirds of local authorities in England do not know how many children with autism are in their area and only two are aware of the number of adults with autism. Twenty-five per cent of children have been excluded from school at least once. Family separation increases from one in three to one in two when there is a child with autism in the family. Training for parents and carers is inadequate or non-existent and training for professionals is again inadequate or non-existent. Children with autism from black and ethnic minority communities experience discrimination on two fronts: their disability and their ethnicity.
A report by the National Autistic Society highlighted the neglect by researchers, professionals and service providers and this is a dimension that must not be forgotten. As awareness of autism among most of the population is very low and the nature of the disability often extremely complex, inclusion is harder to achieve. Despite some advances in understanding and defining autism, there is a long way to go before it can be said truly that people with autism are fully included in mainstream society. Studies suggest that only 15 per cent of individuals with autism become independent as adults. More than 40 per cent are living with their parents as adults. Of the able group the majority report having experienced severe bullying throughout their school lives and thereafter. All report having to combat severe anxiety and a significant number also report distressing sensory differences, such as painful hearing, hypersensitivity to light, touch and perceptual problems. Only about 12 per cent are in paid work although many more could work if reasonable adjustments were made.
The Disability Discrimination Act is not working for this group of people. The Act provides that reasonable adjustments should be made by employers to public buildings to ensure that people with disabilities are not discriminated against. However, the Act does not specify what constitutes a reasonable adjustment. More work is needed to discover the exact nature of the adjustment needed. More effort is needed to ensure compliance with the Act and bespoke guidance on reasonable adjustments should be provided. The Equality and Human Rights Commission should look at that. Sensitivity to noise, light and other sensory stimuli is not taken into account by disability legislation; buildings remain inaccessible to people with autism because of their sensory environment. Many are placed in inappropriate settings, such as mental health institutions or, in some cases the criminal justice system where staff are not trained to understand or respond to them appropriately. They and their families are under the most enormous strain and do not have informed support and help. Families report the struggle they face in getting recognition in everyday affairs such as a visit to the supermarket, or in important matters such as entitlement to education. Autistic children are the group most likely to be excluded from school and the majority of appeals to the special educational needs tribunal concern autism.
While the situation with regard to children has undoubtedly improved, there is very little support available to help them to make the transition from childhood to adulthood. Adults with autism often fall through the gap between mental health and learning disability services. Autism needs a niche of its own to prevent this from happening. The Autism Bill, which is aimed primarily at the needs of adults, recognises the need for better data locally, and that there is a lack of information sharing, planning and services. I know that the Government are committed to providing regulations and statutory guidance to local authorities and all other local agencies, and as part of Aiming High for Disabled Children, the Government have increased funding in relation to transition and autism. I am also aware that the Government are looking to produce a national adult autism strategy. All this is welcome, but it is difficult to see how meaningful this can be without informed research and an information database.
The National Audit Office report, Supporting People with Autism through Adulthood, was primarily impelled by the alarming outcome of a study by Professor Martin Knapp, which estimated the economic cost of supporting children with autism at £2.7 billion each year, while for adults this amounted to £25 billion each year. Of course, the emotional cost for families and individuals is immeasurable.
The key conclusions of this report confirm the huge lack of knowledge on who is affected, where they are and what is happening. It highlights the huge lack of knowledge in how to support those on the autistic spectrum, and the huge lack of transition planning from schools into adulthood.
While there is beginning to be an awareness of the scale of the issues and the high levels of exclusion, there is limited knowledge of exactly how to address them. There is an undeniable case for investing more in this area in order to understand which interventions affect the trajectory of autism and to help society better meet those needs. Autism is a major issue not just for health, and there must be an integrated approach across government. More work is needed to establish both the scale and the extent of the issues raised by this condition. What is certain is that autism costs a lot in human suffering and wastage of talent due to inadequate and inappropriate services and interventions. Currently, against an annual economic cost of £27.5 billion, the government spend on research is a mere £1.7 million, whereas considerably more is spent on research into lower incidence and lower impact conditions. By finding out what is the best way of intervening and supporting, especially in childhood and at that critical stage from childhood into adulthood, not only can we alleviate considerable suffering, but we can help people to have meaningful lives and also help make efficient use of stressed services and economic resources.
While I am encouraged that the Government are taking steps to respond to the issue of autism, I have to say that a lot more is needed. Strategies have to be underpinned by proper data and research, and strategies must be translated into meaningful action. We need action now to train teachers, social workers, GPs, health visitors, employers and benefit agencies. More effort is needed to ensure compliance with the disability discrimination legislation. All this need not wait for the publication of strategies next year. We need to take action now and build on the work that is being done.
I look forward to other contributions to this debate and to the Minister’s response to the issues I have raised.
My Lords, I congratulate the noble Baroness, Lady Prashar, on securing this important debate at such a propitious time with the passing of the first ever Autism Bill and the promise of a national strategy for adults with autism. We now have a real opportunity to improve the lives of people with autism.
One of the most important tasks to be tackled is the inadequacy of the existing service structures within local authorities in meeting their needs. This year’s report by the National Audit Office on public spending on adults with autism found that 74 per cent of local authorities did not have a commissioning strategy for them and only 21 per cent of joint strategic needs assessments—that is the key tool used for the strategic planning of local services—include specific mention of the needs of people with autism.
Not only that, but it found that a failure to identify adults with high-functioning autism or Asperger’s syndrome is actually wasting public money. The NAO found that if local services identified and supported just 4 per cent of adults with this condition, the outlay would become cost-neutral over time. If they did the same for just 8 per cent, it could save the public purse £67 million per year.
The vast majority of local authorities only offer services for adults with learning disabilities or mental health problems. While adults with autism may additionally have these problems, those who have neither are told that they are ineligible for support and that there are no services to meet their needs. However, there are some enlightened authorities providing specialist teams such as the one in Liverpool. Funded by Mersey Care NHS Trust, the Liverpool Asperger team has eight core staff members, including a speech and language therapist, a social worker, clinical psychologists, support workers and a community nurse.
The Liverpool team co-ordinates a network of services working together to address the particular needs of the individual with Asperger’s syndrome. It offers assessment and diagnosis, together with clinical interventions based on the needs of the individual. For some people, a diagnosis may be all that they need to help make sense of their experiences. But others may need help dealing with other social or mental health difficulties or with learning to fit into a non-Asperger world.
As the NAO report has shown, these specialist teams actually save the country money. Often relatively inexpensive services, such as befriending schemes, social skills training, support to use public transport and so forth can be the difference between social exclusion and social inclusion for an adult with autism. This in turn can be the difference between a happy and fulfilling life, with the friends, hobbies and employment that we should all be able to enjoy, and a life of isolation which often leads to acute, and expensive, mental health problems.
We know that this model works. We know that it saves money. We know that it improves lives. It is essential that the forthcoming strategy for adults with autism is explicit about the needs for such teams in every local area, not just some, so that adults with autism can enjoy appropriate care and support wherever they live.
My Lords, I thank the noble Baroness, Lady Prashar, for securing this debate. The issue of social exclusion, especially affecting those with disabilities, is close to my heart. Autistic individuals are one of the most socially excluded groups in society. This is due to the complexity and lack of understanding of autistic spectrum disorders. For far too long, people with autism have been neglected by society. This statement is corroborated by the fact that those with autism often have bleak outcomes later in life. Studies have revealed that a large percentage of autistic people have stated that they find it difficult to make friends.
I am deeply saddened by the testimonies of those with autism; no group in society should be subjected to such helpless circumstances. We have a civic duty to foster greater relationships with autistic people. I should like to give kudos to the families and carers of those with autism, who have provided sufferers with the love and support that they so richly need and deserve. It is also important to offer them any assistance that they may require in fulfilling their highly commendable duties.
People with autism have often been misunderstood for exhibiting what may be perceived as peculiar behaviour. Unfortunately, some of those individuals may come into contact with the criminal justice system at some stage in their lives.
According to a survey conducted by the National Autistic Society, one-third of people with autism are not in receipt of benefits. That revelation is truly shocking, as it tells us that those at the higher functioning end of the autism spectrum are among those who are missing out on vital support and assistance. Poverty is a harbinger of social exclusion. Research reveals that only 15 per cent of adults with autism are in full-time employment. That figure reflects the stark reality that autistic adults are simply not getting the support that they need when seeking a job. All adults with autism who apply for employment and support allowance in future should be given adequate assistance when submitting their claims. I hope that we will address the failures of the benefits system correctly to award appropriate financial support to autistic applicants. Greater understanding and awareness of autism will inevitably lead to better strategic planning among individuals and organisations responsible for addressing the needs of autistic people.
Autism by its nature is a complex condition that requires a comprehensive and co-ordinated plan of action. We are all indeed pleased that there is cross-party consensus on the Autism Bill, which will no doubt herald a new era of heightened awareness regarding autism.
I conclude by stating that it is our responsibility as an inclusive society to do everything necessary to ensure that the discrimination and exclusion that pervade the lives of autistic individuals are eradicated. In order to achieve that, we must ensure that those individuals have access to the support and resources that they require to live happy and fulfilling lives.
My Lords, I, too, congratulate the noble Baroness, Lady Prashar, on securing this debate. As vice-chairman of the All-Party Group on Autism, and as a former chairman of TreeHouse, I find it absolute agony to try to cover the ground in three minutes, but I shall attempt to do so.
The issue of autism spectrum disorder has risen up the agenda massively during the past few years. The passing of the Autism Bill last week in this House demonstrated that. I congratulate all those involved. It demonstrated the real will of Parliament to improve outcomes for adults with ASD conditions. Nevertheless, for both adults and children, there are still a great many issues to tackle. The campaign for improved inclusion and outcomes must continue.
The NAO figure was mentioned by the noble Baroness, Lady Wilkins—that 74 per cent of local authorities do not have a commissioning strategy for adults with autism—so there is a major job to be done to develop appropriate services for adults by local authorities, in particular. I am delighted that a strategy is being consulted on and I very much hope that the Government will take note of the all-party group’s response about the appropriate strategy.
The National Autism Society’s “Don’t Write Me Off” campaign is designed to focus specifically on employment and benefits. The noble Lord, Lord Sheikh, picked up some of those points about employment and benefits for adults with autism. The facts are very concerning in that area. The point that only 15 per cent of adults with autism are in a full-time job is extremely concerning. The NAS campaign is particularly targeted at changing the application process for employment and support allowance. There must be a greater awareness of autism among Jobcentre Plus staff, in particular.
Because of my background as a chair of TreeHouse until last year, I want to highlight some of the issues relating to young people. When the Bill entered the other place, the Government gave certain undertakings in order that items relating to children were withdrawn. The undertakings were that further funding would be provided for the Autism Education Trust and for the transition support programme. I hope that the Minister can comment in particular on whether those pledges are being fulfilled. Of course, there are huge problems with data collection on young people and children with ASD. About 70 per cent of local authorities cannot provide reliable information about the number of children in their area with autism. That must be corrected. I shall be very interested to hear what the Minister has to say about that.
Having the right kind of access to education is crucial for the social inclusion of children with autism and improving outcomes for them. Skills for independent living need to be imparted, including social skills. A great deal of work has been done by TreeHouse working with parents to find what they believe to be the particular aspects of education that their children need. Transition planning for young people is particularly important, as are staff training in mainstream schools and developing national care standards.
I have a final word about exclusion. Children with autism are nine times more likely to be excluded from school than the rest of the school population. That matter needs correction. I wish that I had more time to outline some of the issues.
My Lords, I add my congratulations to the noble Baroness, Lady Prashar, on drawing our attention to these important issues. I shall focus my remarks on four areas, the first being employment. As the noble Lord, Lord Clement-Jones, said, only 15 per cent of people with autism have a full-time job, but 79 per cent of people who are not working and in receipt of benefit want to work. I declare an interest as a member of the Equality and Human Rights Commission. The commission is currently producing a good practice case study concerning the employment of people with autism and other neurodiverse profiles with the Government Communications Headquarters.
We have heard about accessibility from the noble Baroness, Lady Prashar. We know that there is existing disability discrimination legislation about access, but people with neurodiverse profiles continue to experience particular barriers. The commission is currently working to try to address those issues with, first, the Commission for Architecture and the Built Environment to raise awareness among planners and designers and, secondly, with the Building Standards Institute to establish a task group to consider how the relevant building regulations can be amended to reflect their particular needs.
My third point is on education. The commission recently supported a legal case that clarified that schools must ensure that they provide reasonable adjustments to children with autism, even if they display “unwanted behaviour” or very challenging behaviour. Following the Equality Bill, I very much hope that Her Majesty’s Government will revise their guidance and clarify the issue in terms of the excluded conditions set out within the meaning of disability regulations.
Lastly, we must recognise that, since the National Autistic Society was founded nearly 50 years ago, the children of those founders have grown up and are ageing, as is the whole of society. However, older adults with autism have been largely ignored in recent press coverage of social care. We still do not know whether and how people with autism and other neurodiverse conditions age. We do not know whether their symptoms intensify, for example. There is much more that we need to learn. Autism across the life course deserves a far higher profile. More research is essential. I hope that the noble Baroness can assure us that attention will now be given to a group of people of all ages who are extremely vulnerable and deserve our close attention.
My Lords, I, too, am very grateful to the noble Baroness, Lady Prashar, for highlighting the particular needs and contribution of those living with autism in our society. Like the noble Lord, Lord Clement-Jones, I am grateful to the National Autistic Society for its research and for demonstrating that the employment and support allowance is not accessed anything like easily enough by those with autism. The noble Lord, Lord Clement-Jones, took up this point; I agree with him and look forward to the response.
I want to go further than the specific case of ESA, important though that is, and ask the Government how they propose to widen our understanding of autism and, particularly, of the contribution that those on that spectrum can make to our life and culture. I first became actively involved in working alongside those with autism through the work of Storm House School in Wath upon Dearne in South Yorkshire some 30 years ago. Since then, in one sense, there has been a great increase in our understanding of and appreciation for those with autism. In other ways, however, little of this understanding has affected our practice as a society. Faith communities are, at their best, one place where those with autism can find the enhanced social inclusion for which the noble Baroness, Lady Prashar, pleads. This summer, the Church of England published Opening the Doors, which is designed to enhance our understanding.
Those with autism can, and do, provide welcome and excitement in churches and elsewhere within our society. Time and again, those with autism have provided me with an enthusiastic welcome and a radiant smile. There is a lightness of spirit about many of those with autism that can put our overfrenetic and overfearful culture to shame. Those gifts of honesty, spontaneity and eagerness to participate are to be welcomed and shared. The noble Baroness, Lady Prashar, spoke of a waste of talent and I emphasise that it is important that we accept and receive from those with autism as well as contribute to their lives and development.
I know full well that that appreciation will come only if government and others develop greater understanding of autism within our culture. There can be a lack of communication skills and a hypersensitivity that lead other people to find those with autism awkward and demanding. There is often a need for rest and a lack of sudden movement, which is not confined to those with autism but is typical of them. I hope that the Government will respond by giving specific help in the benefits system and in the disability Act and by helping to spread understanding of autism and an affirmation of the qualities that those with autism could bring to our culture, if only we were prepared to let them.
My Lords, I am glad that the noble Baroness, with her considerable social experience, has put this issue so clearly before us this evening. I am glad that in doing so she paid tribute to the voluntary organisations that play such a crucial part. Apart from the issue of employment, there are two statistics that particularly trouble me. First, with 40 per cent of autistic children, there is a delay in diagnosis. Secondly, as we have already heard, 25 per cent are at some point excluded from school. This must mean that earlier diagnosis is a priority, which means that we must give more attention to the recruitment and placement of educational psychologists. We need the people to do that work if we recognise it as an issue. We then have to be certain that we have the material and human resources in place for the special educational services that are needed.
However, as the right reverend Prelate just put it so movingly, the third priority is better public understanding. As with other forms of exclusion—the huge issue that faces us all in the 21st century in one form or another—we are much better at talking about the people who are excluded than at talking with them. There is a great need for the reassertion of the spirit of solidarity. If this is to be achieved, the media have a key part to play.
I believe that one of the heaviest challenges lies in the sphere of formal education. I am afraid that the direction our education is taking these days, with its emphasis on league tables that deal with quantitative learning, means that we are neglecting the spiritual and wider character-building of our children. I am certain that a successful education system means that children learn through experience. They develop, they enrich themselves and they grow by their relationships with others, and particularly by their relationships with those who have special needs and special challenges to face. In that context, I suggest to the House that if we are going to win this battle not just tactically by new arrangements, but strategically, it is essential that we get back into our education system values, sensitivity, social responsibility, concern and recognising our interdependence. Along this road, we can bring autistic children like any others into a full part in society and give them a real opportunity to demonstrate the tremendous talents that they have to offer.
My Lords, I declare an interest as the father of a daughter with autism. There are over 300,000 working-age adults with autism, but recent NAS research found that a third of them are without a job or benefits, completely excluded from society, a point well made by my noble friend.
People with autism face many challenges in applying for work and in the workplace itself. Making eye contact and answering questions that involve hypothetical scenarios during interviews can be difficult, and a lack of understanding of workplace etiquette can mean people do not fit in easily or are perceived to act inappropriately. Yet with the right support, people with autism can thrive in the workplace. The NAS's employment service, Prospects, is a specialist service supporting people who have autism into mainstream jobs. It has a very successful record of helping people find and retain work. Between 1995 and 2003, 67 per cent of the clients it supported found work. Furthermore, 70 per cent of the pilot scheme's beneficiaries from 1995 to 1997 were still in employment in 2003.
Much of Prospects's work focuses on supporting employers to make what are often simple, yet positive, adjustments to the way employers conduct interviews and manage people with autism. This includes advice on how to structure the recruitment process so that it works for people with autism; many organisations use group tests as part of their assessment for roles, but a work trial is a more appropriate interview method for an individual with autism. It also offers training to employers to enable them to better support people with autism in the workplace. For example, Sam got a job as a sales assistant. He enjoyed talking to customers as part of his role, but he needed guidance on what to say and how long to talk for. Left to his own devices, Sam would go on talking to customers even when they were desperate to get away but were too polite to say so. Sam's manager helped him by suggesting suitable topics of conversation. He was encouraged to discuss the weather or the products in the store, rather than more personal subjects. Sam's manager had the skills to offer simple, practical support that made a real difference to Sam in his new role. However, there are currently very few specialist autism employment services and very little support available to adults with autism looking for work.
There are just as many difficulties for those seeking support from the benefits system. Recent NAS research has found that people with autism are regularly being denied the support of an advocate as they apply for benefits, they are facing unnecessary administrative hurdles with requirements for sick-notes and all too often they are being assessed by doctors with little or no knowledge of autism. Paula, a young woman with autism, was keen to access the extra support to find work that comes with employment and support allowance, the benefit that is being introduced to replace incapacity benefit. She went to her medical assessment with a seven-page report from her psychiatrist; yet the doctor carrying out the assessment recorded that he saw no evidence of communication difficulties, and her application was rejected. She went to appeal and was awarded the benefit straightaway. People should not have to fight to get the support that they need. Everyone has the right to a job, and people with autism are no different.
My Lords, I, too, declare an interest as a mother of a 30 year-old autistic person.
I am delighted that my noble friend Lady Prashar has brought the debate to this House, and I take the opportunity to salute her longstanding commitment and work to promote equality and social justice. I say “hear, hear” to the immense contributions from all sides of the House. In accepting that we have a long way to go in eradicating discrimination, it is worth remembering how much progress we have made. I welcome the Autism Bill—the first legislation on a specific disability—which brings autism in from the cold of the fringes of the disability movement.
It has been more than 10 years since my friends Ivan and Charika Corea of the UK Autism Foundation first brought your Lordships’ attention to the desperate plight of those caring for autistic children and adults. The new Autism Bill is a great step and, as the noble Baroness, Lady Pitkeathley, said in this House, it puts autism on a statutory footing and makes the Government accountable. I am delighted about that. Indeed, all the major autism charities are pleased by the prospect of lasting changes that must occur if we are serious about equality for people with autism.
The adult autism strategy launched by our Government will no doubt further enhance care, support and employment opportunities for people with autism, as well as boosting the skills of health and social care staff who support the autism community. This is certainly a step in the right direction, given what many charities say about the prevailing conditions for a vast number of families and people with autism, Asperger’s syndrome and other disabilities, who are in a continuous struggle for services and opportunity. Particular concerns remain about those in the transitional stage, about adults and about services for ethnic minority communities, as has been mentioned. Here I should mention the deaths of Fiona and Francecca Pilkington and how far we still have to go in understanding disability matters.
We are in the longest recession since records began, and the impact on the vulnerable is as yet unknown. The UK Autism Foundation has written to all the major political parties urging action. It reports examples of parents and carers of children and adults with autism and Asperger’s syndrome who desperately need support and are in financial crisis. We cannot wait another 10 years for a strategy to come along and have an impact. The families need support now.
I am further concerned about the news of cuts in public services having an impact on children and adults with autism, and therefore support the call from some of the charities for the Chancellor to consider increasing tax credits, the DLA and the CLA for disabled persons and their carers. In 2005, I called for an autism task force in government in this very place, and I repeat that call. Will the Minister consider the matter? Such a task force would help different government departments to work together. The Government’s strategy and further consultations will, it seems to me, create further delays for families and individuals accessing services, education and employment opportunities that it should be their right to access, and it is very important that we ensure that equality and justice prevail for them just as they should for us all.
My Lords, the most depressing thing about this debate is that we have heard it all before in the context of other disabilities. The pattern of “if you do not spot it, you do not put in any money or effort, and you do not have anything” is quite clearly seen throughout the briefing and in the experiences that have been discussed in this debate.
When I read the information that was provided by the National Autistic Society on the non-take-up of benefits I was not at all surprised because, despite the fact that there are supposed to be interviews to assess benefit—I have challenged the Government on this for more than a decade—if the person conducting the interview does not understand the situation with which they are dealing, they cannot get the right answer; it is that simple. There must be investment in the people who are conducting the interviews. You can go into education and everything else and follow this through but, if you do not give the right support at the right time, you overload the family financially and emotionally and put the problem on to another department. Ultimately, prisons and hospitals pick up the pieces.
Will the Government assure us that they will have properly trained people in every single place that issues benefits—I will not even try to mention them all—who have a basic knowledge of this problem and can bring in the right support at the right time? The Government have said that they will, but when will they have those people who can intervene correctly? If we do not have that assurance, with the best will in the world and even with the various Acts that give this legal right, this will not happen.
I have raised all these points in connection with dyslexia, and we are in the process of trying to batter the Government into doing these things in connection with autism. Will the Government say when they are going to do the right thing, which their own legislation has said they should? If they do not, all the warm words in the world will not touch this.
My Lords, the National Autistic Society’s recent report, Don’t Write Me Off, brings home in graphic style the amount that there still is to accomplish if we are to do justice to this poorly understood and poorly served section of the community, but at least and at last a head of steam is building up. In the past few months, we have had the National Audit Office report; the report by the Public Accounts Committee; the Bercow report; and, very significantly, the Private Member’s Bill of my honourable friend Mrs Gillan, on which she, and I have to say the Government, are to be warmly congratulated. With the cross-party acceptance of her Bill, I hope that things will finally get moving in this area. They certainly need to.
At the heart of the problem is a very simple and sad truth; people do not understand autism. That basic understanding must begin with parents and schools. The life chances of those with autism are made or broken at school. If social inclusion is not achieved then, the road to independent living and employment in adulthood is very rocky indeed.
TreeHouse makes the central point that the essence of autism is an inability to communicate or interact normally with other people, and that therefore unless the rest of us make an allowance for this and actively work to overcome it, social inclusion is simply not going to happen. I was not in the least surprised to read in the TreeHouse paper that one of the most important things that parents believe can be done by schools is to provide their autistic children with an environment that meets their needs in a holistic way, not just academic. The outcomes that children should work towards in school are about acquiring social and practical skills, and learning how to manage their behaviour. That is why, for this particular group, learning how to mix with other people in an ordinary school environment is by far the best option if it can be achieved.
Sometimes it cannot be achieved, which brings us to the other central point. We cannot design services merely around a diagnosis. Services have to be needs-led according to each individual, which the Autism Education Trust said in its excellent review last year all too often does not happen. Good practice is down to good training, as we have heard, and it would be helpful to hear from the Minister that the Government’s autism strategy will devote space to the issue of training. But we also know from the NAS that autism is capable of an equal degree of misunderstanding in the workplace and, as we have heard, in jobcentres, where more than a third of those asked said that their disability employment adviser’s knowledge of autism was “very bad” or “bad”. I was dismayed to read in the Don’t Write Me Off report how people have to struggle when applying for employment and support allowance. All too often, the questions put to them are completely inappropriate. These things need to be tackled. We have heard about the third of a million people of working age in the UK with an autistic spectrum disorder; but only 12 per cent of these are in full-time employment. That statistic is an indictment.
I welcome what the Government are at last doing to bring the needs of autistic people to the fore, with a meeting of minds from all political parties. The stress and misery endured by families with ASD in their midst, particularly poorer ones, is very severe and too often they are being let down by local authority services. It is a major issue and the momentum of government action really must be maintained.
My Lords, this is a very important debate, and I congratulate the noble Baroness, Lady Prashar, on initiating it. I also congratulate other noble Lords on delivering on-the-point, to-time speeches. We can all agree that people with autistic spectrum conditions face enormous barriers to inclusion in society, barriers which may affect something as fundamental as an individual’s ability to build relationships and communicate with the people around them. As the National Audit Office’s recent study showed us, only around 15 per cent of people with autism have a job, a point also made by noble Lords. Too many children with autism are excluded from school, and too many people are sent across the country to special facilities. We know that this is no longer acceptable.
Autism is a hidden disability, one that is still not well understood by society as a whole, as well as many in the caring professions who should understand it. Some people face the additional barrier that their autism has not been recognised, so that in effect they have not been seen as sufficiently disabled. We are talking about a spectrum of conditions and a wide range of individual needs. Some people with high-functioning autism are able to live independent lives, but many others will need support. Some will have accompanying learning disabilities or other conditions; they may display behaviours seen as challenging and need a lifetime of specialist support. Where autism has this effect on an individual, that person is a disabled person for the purposes of the Disability Discrimination Act, and thus is entitled to the full protection from discrimination which is provided by the Act, including from discrimination that arises from a failure to make reasonable adjustments. I was pleased to hear the remarks of the noble Baroness, Lady Greengross, about the work of the EHRC in this area, and I accept entirely the points made by noble Lords about the application of the Act in this regard.
That is why my department is leading work across government to address the inequalities and exclusion which people with autism face, to ensure that they get the support they need to access the same opportunities and mainstream services that the rest of us take for granted, and to live independent lives as equal citizens in the community. However, there is no quick fix either legislatively or financially. It is also about long-term education, culture and attitude change. In April, my honourable friend Phil Hope launched “A Better Future”, a consultation on what the Government’s autism strategy should look like. Social inclusion was identified as one of its five key themes. There has been a fantastic response to the consultation with more than 1,000 responses received from people with autism, professionals, voluntary groups and carers. These responses will inform the development of the strategy, ensuring that it can properly reflect the everyday reality of those whose lives are touched by autism.
The consultation has been extremely useful and informative and has helped us to form a consensus around what the priority areas should be, not only from a health and social care perspective but across all public services. First, there needs to be a greater awareness of autism and the needs of people with autism to make key services such as health, housing, benefits, Jobcentre Plus and local government more accessible. I shall return to that in a moment. Secondly, more work needs to be done to help with the identification and diagnosis of autism. Recent data reinforced previous assessments that one in every 100 adults living in households is on the autistic spectrum—that is about 300,000 people in England—and is more or less the same as the prevalence in children. This helps social services planners and commissioners to start to get a much clearer picture of what needs support in their areas.
The third priority to come out of the consultation is that it is the job of all service providers, not only specialists, to do whatever they can to help people with autism to live independently. Where there are blockages it is everyone’s responsibility to do whatever is necessary to remove them. The challenge—it is a huge one—is to ensure that programmes aimed at improving care and transforming public services address the needs of people with autism so that they no longer fall through the gaps.
The fourth priority is to give people with autism and their families somewhere to turn for help and support. This means increasing the capacity of existing services and working, for instance, with the third sector to provide more and better signposted services. Fifthly, and most importantly, in all respects we must ensure that people with autism benefit from personalisation, an issue raised by the noble Earl. No two people on the autistic spectrum have the exact same needs and we cannot design a system of care and support that treats them as anything other than unique individuals with individual needs.
That is the whole point of what we are trying to do. The strategy is not about setting up new structures or separate services but about making existing services meet the needs of people with autism; it is about being innovative and providing smarter services and spending money more effectively; it is about working differently and taking responsibility as individuals, organisations and communities; it is about making the system and the private and public sectors meet the needs of individuals, not making individuals meet the needs of the system. That will make the real difference. If we can get it right for people with autism, who have so many complex needs and individual challenges, we can get it right for everyone.
This is not something the Government can do alone; everyone in society needs to change their attitudes to people with autism, people who are different. We have seen too many horrible incidents of disabled people being singled out and attacked for being different. That is unacceptable and so, for example, a key element of our strategy will be working with key partners such as the National Autistic Society and TreeHouse to raise awareness and understanding and bring about the cultural changes that are needed.
I am sure my noble friend Lady Uddin will be pleased to learn that the Prime Minister has already given his backing for a co-ordinated strategic approach that will drive through change in services across the public sector. We aim to provide a truly cross-government strategy, just as we did with the Valuing People Now strategy for people with learning disabilities. It is an exciting time for our autism policy at the moment. I do not believe, as the noble Lord, Lord Addington, said, that these are warm words. Our strategy consultation having just ended, the welcome report of the Public Accounts Committee and the—
That is part of the strategy. Perhaps the noble Lord will allow me to answer specific points. I can understand why he is feeling angry about this—indeed, it is shared by many of us—but it is simply not the case that nothing is happening; I do not accept that contention of the noble Lord. Of course, the Autism Bill has just finished its passage through the House with widespread support.
Turning to some of the points made by individual Members of the House, the noble Baronesses, Lady Prashar and Lady Greengross, both raised the issue of research. We have committed £600,000 to fund the prevalence study and £200,000 to enable the study to gain the best evidence of the transition to adulthood of young people with autism. Through the Medical Research Council the Government are currently funding 10 live grants and three live fellowships. The autism spend figure for 2007-08 was £2.26 million. It is not enough but it is certainly more than it has been in the past.
The noble Baroness, Lady Prashar, raised the issue of how to improve data collection. The joint strategic needs assessments are a key mechanism for commissioners to understand the needs of local people and the information included in the JSNAs about people with autism is critical to ensuring that better services are planned and commissioned locally. This year we will publish the good practice guide, which will set out what a good JSNA looks like to help assessors identify the needs of people with autism who may be at risk of falling through the net.
My noble friend Lady Wilkins and the noble Baroness, Lady Prashar, both raised the issue of information and data. It is true that there has not been a focus on services for adults with autism. We recognise that this is a real issue, which is why we are commissioning a prevalence study. We have asked the SCIE to look at how personalisation works for adults with autism and gather the views of professionals, people and carers. I have before me a list of about eight other things that we are doing. I shall write to noble Baronesses about them so that I can deal with other issues.
The noble Lord, Lord Sheikh, asked about benefits and the wider programme. The Government are well aware that many people with autism are not receiving the support they need to live independently and encounter barriers to both accessing mainstream public services and full inclusion in society. That is why we have taken firm action to develop the first ever cross-government strategy on services and support for people with autism. The contributions of the National Autistic Society and the All-Party Group on Autism have been helpful in further raising the profile of this very important issue.
The noble Baroness, Lady Greengross, raised the critical issue of transition, which I address every time I speak on autism in your Lordships' House. The Government have announced a £19 million transitional support programme which will help to improve support for disabled young children through the transition to adulthood, including those with autism.
My noble friend Lord Judd raised the issue of acknowledging the progress and achievements of children with autism in the education system. These issues were raised during the passage of the Special Educational Needs (Information) Act. The DCSF is running a £31 million pilot programme in 10 local authority areas which is intended to improve outcomes for children with SEN, including those with autistic spectrum disorders.
The right reverend Prelate spoke about awareness-raising. The key thrust of the government-wide programme is to increase awareness of autism across the public sector. It is about not just those who provide services but also the wider community. The right reverend Prelate was absolutely right that how our society accommodates, celebrates and accepts difference is crucial.
My noble friend Lady Uddin raised the issue of money. We recognise that in the current economic situation public services are operating under huge financial constraints, but this should not be allowed materially to impact on the drive for change across the public services for people with autism.
I am glad that I have had the opportunity to set out more clearly our determination to lead action which will ensure that people with autism no longer fall through the gaps and to assert their right to live as independently as possible as citizens in our society.