Adult Autism Strategy

Robert Buckland Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mr Robert Buckland (South Swindon) (Con)]

It is a pleasure to serve under your chairmanship, Ms Clark. Indeed, it is a pleasure to follow the hon. Member for Strangford (Jim Shannon), who made some powerful points on cross-departmental working. I am glad to see the Minister is here with the lead civil servant on autism from the Department of Health, with whom I have had many conversations about cross-departmental working.

I have a quick example of cross-departmental working in relation to the transition period. We have all had casework in recent years involving 17 or 18-year-olds who are moving away from secondary education into further education and who find that their transition period is, frankly, stymied by lack of clarity on the funding of their FE places. I have had a number of such cases. Last year was particularly problematic in certain instances. That was through no-one’s ill will, but it was a result of the lack of genuine communication and cross-working between those responsible for the funding of further education and the other services that work with young people with autism. They are young adults coming into the adult world, and their first experience is negative. That is not a good sign of what is to come, not only for those young people but for their families and carers. There is a fear that I call the 4 o’clock in the morning syndrome, which is when a parent wakes up and thinks, “My child is young now, but what will happen when they grow up?” We keep having to ask ourselves that question. It is the exam question that I set for the Minister in today’s debate and at every opportunity we have to discuss the strategy for adults with autism.

I pay tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for her sterling work to help to bring the Autism Act to the statute book, which was before I came to this place. The Act means that the autism strategy, which is now being revised, is the core document for local authorities and all providers and commissioners of services across England in working with and providing a proper strategy and service for adults with autism.

I have the pleasure and honour of chairing the all-party group on autism, and I enjoy working with Members from both sides of the House. The all-party group has had significant success in the years since it was founded in 2000 not only in campaigning but in achieving real change for children and adults with autism and their families. As my right hon. Friend said, the Act has, in certain areas of the country, delivered that real change. I am delighted that in my constituency in Swindon we now have not only an autism partnership board, the meetings of which I have attended, but an efficient adult diagnostic service. Our social enterprise, SEQOL, was commissioned to provide that diagnostic service, which is one of the best in the country. We are now able to identify adults in their 50s, who are getting a diagnosis for the first time. That is important for them and is an acknowledgement not only of the questions and issues that they have been raising over the years but that, for far too long, far too many people have lived without any support or diagnosis. Diagnosis, of course, is only the first stage. What comes next is as much a challenge, and it is a question that we need to answer.

[Tim Loughton]

My hon. Friend is a much greater expert than I am on autism. I was one of the founding officers of the all-party group on autism back in 2000, and it has done important work in this area, among the most important of which was our work with schools and local authorities to encourage early diagnosis, joined-up work and greater consistency in how we detect autism in the first place. If we can do that and tailor the school experience to the special needs of people with autism, we will not end up with people not being detected until as late as their 40s or 50s, which means that they miss out on a whole lifetime of support.

[Mr Buckland]

I entirely agree with my hon. Friend. I am grateful to him not only for his work on the all-party group but for his work as shadow children’s Minister and as children’s Minister in this Government. He played his part in ensuring that early diagnosis is a step closer to reality. The Children and Families Bill, which is shortly to be enacted, now incorporates education, health and care into one plan for young people who previously received statements of special educational needs. I am talking about children, but what my hon. Friend says is relevant. If we fail to take those early steps, the problems that manifest in later life become not only more difficult for the adults and their families but more expensive for the state. One example is that adults with Asperger’s are seven times more likely to come into contact with the criminal justice system than those without the condition. Why? Because Asperger’s is still a relatively unknown condition. It is not understood by many agencies that deal with it, and misunderstanding leads to sad results.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I thank my hon. Friend for his extraordinary leadership and for having a positive impact in a relatively short time on the understanding of autism. On Asperger’s, he will share my concern for those who unfortunately fall into the criminal justice system, but how far do we need to go to ensure that all agencies properly understand Asperger’s? Just last week, a constituent told me that Atos did not have a clue on how to deal with it. His older child was completely let down by the work capability assessment.

[Mr Buckland]

My hon. Friend, of course, has constituency experience with the Gary McKinnon case of how we can reach a dreadful situation where, because of a complete misunderstanding of the condition, serious consequences can flow. He makes an important point about Atos, and we have seen the difficulties that it has got itself into. It is unacceptable that we have a system that does not properly recognise these conditions. Frankly, it is a scandal. We can do far better than that, not only for adults with Asperger’s but for the range of invisible conditions—I do not call them hidden conditions, because the word “hidden” has connotations of its own—right through the gamut of mental health. We do not have a grip of that, either in the benefits system or with some other agencies.

[Mrs Gillan]

I pay tribute to my hon. Friend for his chairmanship of the all-party group. He has been driving forward progress in this area in a superb fashion. In my experience, the issue he is discussing also manifests itself in all sorts of strange areas. If a local authority or housing association dealing with an adult with Asperger’s has no idea of that individual’s sensitivities, it can positively harm that individual and others surrounding them, leading to immeasurable costs to the taxpayer and in the damage done to the individual.

[Mr Buckland]

I entirely agree. It is time that we recognise that conditions such as autism are particular disabilities that open a gateway to specialised housing. Unless we deal with that, we will carry on down the failed route of institutionalisation. We can see the logical conclusion of that in Winterbourne View and other serious examples. The Minister has a passion to deal with these issues, and I know he agrees that independent, supported living in properly tailored, properly built housing—it does not yet exist in any great measure—is what is needed for adults with autism if we are to avoid the tragedy that I and other hon. Members see week in, week out, whether we are canvassing or in surgery. We see young people sitting upstairs in the family home, without a job and they do not know what to do. They have no support, and their families are at their wit’s end in knowing what to do. We have to do better than that, and they deserve better.

On interface with agencies—I was talking about criminal justice—in many police areas, we now have autism alert cards. That system works well in Wiltshire, which is the police force area in which I live. We relaunched our autism alert card only last week. It is a simple thing: a bit of plastic with next of kin details on it. Importantly, the card tells the reader that the person carrying it has autism. That should trigger a series of events happening and make the police aware that autism is a factor. If various support services and care services are needed, they can be brought into the package and the family and the support network can also be informed about the incident or problem that the adult is having. Those simple measures can make a great difference.

[Mr Henry Bellingham (North West Norfolk) (Con)]

My hon. Friend is being incredibly generous. Where do GPs sit in all this? He has mentioned awareness and the need for different agencies to work more closely together. Does he agree that GPs should be given more training on autism at medical schools?

[Mr Buckland]

In a word, yes. GPs would welcome it and it would, at a stroke, deal with a whole range of unidentified problems. With greater awareness among general practitioners, referrals can take place. Where there are existing diagnostic services, as there are in Swindon, they can be used and, as I have mentioned, SEQOL and other organisations in other areas can get to work, using the pathways and identifying the condition.

What is next? What else is needed? I am a great believer in advocacy services, and I can see their power in some excellent local examples. The Swindon Advocacy Movement has recently had more funding to extend its remit to help people with autism and Asperger’s. It is a wonderful organisation, with a one-stop shop in the centre of Swindon that gives support to adults with learning disabilities. Its motto is that it is not there permanently to do things for people, but to empower people to help themselves. With that little bit of help, support and advocacy, lives can be changed for the better, and I see that happening through its wonderful work.

We also have Discovering Autism Spectrum Happiness, a voluntary organisation set up by a group of like-minded individuals some years ago in Swindon. It is now working from the Pinetrees community centre, offering the Swindon autism information and advice service, which is an invaluable resource. It only started last year, and it has already reached out to more than 150 individuals with autism and their families. By its estimate, there might be a couple of thousand of people in the community who have not yet been identified. Through its support work and its network, it is giving advice and empowering people with autism. I had the pleasure of visiting it only two weeks ago to talk about some of the cases that it is finding and some of the cases that are coming across my desk. There is a lot going on in local communities, but there is much more that we can do on an overall strategy to identify best practice, to knit that together in a co-ordinated and coherent way and to give other commissioning bodies and other authorities a gold standard from which they can work.

The Minister knows that I am not into lowest common denominators or prescriptive measures when it comes to this sort of thing, because I believe in localism. There has to be, however, some standard to which all commissioning bodies should work. Like adults who are neurotypical, adults with autism should not be frightened or worried to move about. If they can move to another part of the country to secure employment, they should reasonably expect that autism services in their new town or city will be of a similar standard to where they have come from. When they have a family support network, the tendency is for people with autism to stay close to home, and in many cases that is not a bad thing at all. Bearing in mind the Winterbourne View example, bringing people with a disability closer to home and to their network is a good thing, but there will be many high-functioning people with autism who want to travel, want to move about and want to take that job at the other end of the country. Why can they not do that? At the moment, there is a fear that the support network that they might enjoy in Swindon would not exist in another part of the country. That is the function that the strategy could fulfil; it is an empowerment strategy, not some prescriptive “We know what is best for you, so we will tell you what to do” strategy.

On community autism awareness, I have talked somewhat about advocacy services and information, but I want to talk about the sense of isolation that many with autism and their families feel. In a survey conducted by the National Autistic Society, 82% of adults with autism said that they have days and 42% said that they have weeks when they do not talk to anybody outside their household. Just think about that for a moment. Some 72% said that they have been bullied or discriminated against. A survey by Ambitious about Autism found that 87% of parents and carers of people with autism felt unsupported by the community. Those are stark statistics, but some of the solutions are simple. Small adjustments are all that is needed to change things. In the supermarket, staff are often not trained to know how best to deal with individuals who have autism. In the hairdressers, a few sensory adjustments would allow someone with hypersensitivity to access those facilities. The cinema at Greenbridge in Swindon regularly hosts autism-friendly screenings for children and young people, which make all the difference in the world. Parents at those screenings do not need have to have eyes in the back of their heads or worry about whether their child will be seen as naughty or misbehaving. They can relax, secure in the knowledge that everybody around them is accompanying someone with autism. Such adjustments make a huge difference in the lives of not only the individuals who have autism but their carers and families.

[Tim Loughton]

My hon. Friend is making an important point. The large DIY chain B&Q made a virtue of employing older people and disabled people, who are sensitive to the needs of their older and physically disabled customers. As a result, more disabled or older people tend to shop there than at other DIY chains, because the staff understand them. There is a commercial advantage in training and employing staff who have greater sensitivity to, and experience of, autism and other learning disabilities.

[Mr Buckland]

That is a powerful point. Employing older people and disabled people is good not only for business but for employment. Doing so is not simply about being a kind employer; it is about being savvy. We have already heard about the huge potential that those with autism, Asperger’s and related conditions offer. They have qualities and gifts that we do not have, and they have incredible resources. If we only empower them, they can show us what they are capable of.

[Robert Halfon]

My hon. Friend is making an incredible speech. I have mentioned PACT for Autism, and the pilot apprenticeship schemes for people with autism. Given that the Government are investing so much in apprenticeships, does he agree that they should incentivise companies to hire apprentices with autism?

[Mr Buckland]

That is an excellent idea. As my hon. Friend knows, our hon. Friend the Member for Ilford North (Mr Scott) has pioneered a wonderful scheme in his area whereby employers are matched up to young people with autism in order to offer them apprenticeships and job opportunities. I commend that local initiative to my hon. Friend the Minister as a great example of what can be done to empower young people and adults with autism.

I have talked about local cinemas and hairdressers, but what about training bus drivers to be aware of the needs of passengers with autism? I am sure that bus drivers would be receptive, because such training would make their life much easier. A lot of useful measures, such as the provision of quiet spaces in shops, can be done very easily. As my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) said, they will open up business to new opportunities.

I draw a parallel with some of the excellent work that has been done on dementia awareness. The co-ordinated dementia-friendly communities programme has been supported by the Government since 2012, and the Prime Minister has commended it. In dementia-friendly communities, local people come together to decide how to include people with dementia. Transport providers, charities, schools and local authorities all open up their facilities to ensure that people with dementia and their carers—let us not forget them—are not discriminated against. Only two weeks ago, I opened a memory café in the Wyvern theatre in Swindon, where people with dementia and their carers can come on Thursdays to have some space, enjoy mainstream activities and feel part of life.

There is an important parallel to be drawn with autism. How are we going to achieve similar improvements for those with autism? Not only must environments be made easy to navigate, but businesses and services must be respectful and responsible; public and private service providers must receive better training; there should be volunteer-led public education in workplaces and schools; and we must work with venues to help them adapt their buildings. Things such as better signage, more information and befriending schemes are also important. All that has been done with dementia, and we must do the same with autism.

The National Autistic Society gave me an example from a blog of a mother who loves musicals but has not been able to go to see a show for some years because her four-year-old son has autism with hypersensitive hearing. Believe me, I know what that is all about. Last year, she bought tickets for an autism-friendly performance of “The Lion King” in London’s west end. The organisers provided accessible information about the venue to ensure that children with autism would not be overwhelmed on the day. When mother and son went to the theatre, they found that there was a relaxation area where parents could go. At the beginning of the performance, one of the actors came on stage to help children understand the difference between actors and characters in the play. That performance brought families together and beat isolation.

That example relates to children, but there is no reason on earth why we cannot do the same for adults. For a few hours, children and family members were able simply to be themselves. That is the point I made about the Greenbridge cinema experience, which has been invaluable for so many families. Parents are not judged and they do not need to have eyes in the back of their heads. They are accepted and they do not need to apologise for their children or the person for whom they are caring. That is priceless, and I cannot describe how important it is for families of people with autism.

I have to contrast that with my experience some years ago at the Riverside theatre, where we went to see the musical “Salad Days”. As those of us who know and love it will be aware, it is all about a piano that makes people dance. Well, my daughter decided to dance. I thought that that was wonderful, but some in the audience, who did not really understand, did not, so that was the end of that. We really need to move away from such experiences. That has lived with me as a very bad experience for the family, and I hope that I never have to go through that again. I hope that one day we will no longer have to put up with the sort of phrases that I have encountered, or the lack of thought that people often show for those for whom we care.

I hope that the revised and re-published autism strategy will acknowledge what ordinary people and ordinary businesses can do better to make our communities autism friendly. My experience of talking to and e-mailing with many families across the country who are affected by autism indicates that there is a will for change. The right framework and the right resources from central Government could help us make the step change in society’s attitudes towards autism that we have championed, and on which we want to see real action.

--- Later in debate ---

[Mrs Gillan]

rose—

[Mr Buckland]

rose—

[Norman Lamb]

I will give way to both colleagues, but first to my right hon. Friend the Member for Chesham and Amersham.

--- Later in debate ---

[Norman Lamb]

I thank my right hon. Friend for accepting my offer, and now give way to my hon. Friend the Member for South Swindon.

[Mr Buckland]

I am grateful to the Minister. I will not take up his valuable time, but I want to thank him for the meeting he had on the strategy the other day with me and my hon. Friends the Members for Salisbury (John Glen), and for Cambridge (Dr Huppert). We have already started the work here in Westminster, and I am very grateful to the Minister for agreeing to a further meeting with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) to push the agenda forward.

[Norman Lamb]

I acknowledge my hon. Friend’s comments. I share the shadow Minister’s view that this issue is entirely bipartisan. There is a massive need to change and increase society’s understanding of autism. Awful things so often happen through ignorance of autism and the entire spectrum. It is crucial to raise awareness, as several Members have said.

My right hon. Friend the Member for Chesham and Amersham raised a number of queries about whether the revised strategy would reinforce the points from the original strategy, and I can confirm that it will do so on all the points she mentioned. It must also go further and look into other areas.

My hon. Friend the Member for South Swindon talked a lot about the criminal justice system, and we must look at how we can improve things there. He made the point that someone with Asperger’s is seven times more likely to end up having some contact with the criminal justice system. We have started to roll out the Government’s liaison and diversion service, which I announced back in January. By 2017, we aim to have a nationwide service for people with mental health problems, autism and learning disabilities who end up in the criminal justice system, often inappropriately and unnecessarily. Getting people diverted to diagnosis, which Members have talked about, and to the right treatment can often prevent further offending and potentially thereby transform someone’s life while protecting others.

[Mr Buckland]

I pay tribute to the Minister for the mental health pilot schemes that are being introduced in Wiltshire and other places; they were recommended by the Bradley review some time ago. Does he agree that community psychiatric nurses need training, particularly in cases of comorbid autism and mental health conditions, which are sadly quite common? We must ensure that the pilot covers autism when it comes to the diversion at the police station.

[Norman Lamb]

I absolutely agree with my hon. Friend. I wanted also to touch on the point made by my hon. Friend the Member for South West Bedfordshire (Andrew Selous) about the parents of adults with autism who, far too often, are told by clinicians that they cannot talk to them about their adult child’s circumstances. Clinicians often hide behind the absolute importance of confidentiality about a condition in order to refuse to talk at all to the parents—the people who know the individual better than anyone. That is an attitude of mind among too many clinicians. It has to change.

I also wanted to refer to the points made by my hon. Friend the Member for Strangford (Jim Shannon). I think I can call him my hon. Friend. [Hon. Members: “Hear, hear!”] Thank you for that. He talked about the pressure on families, and he is absolutely right. Whether one is talking about learning disability, autism or dementia—there are parallels with dementia—the need to raise awareness in society is real. I am also happy to look at the Northern Ireland legislation and at what lessons can be learned throughout the jurisdictions.

Another point in response to the debate was to do with transition. Whether with mental health, learning disability or autism, we so often find that disasters happen at the age of 18. My hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) alluded to that important point. Too often, people are lost to the system. The age of 18 is the worst possible age to withdraw support, whether we are talking about mental health in general or autism in particular.