Adult Autism Strategy

Tim Loughton Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mrs Gillan]

I congratulate my hon. Friend’s local charity on setting up that apprenticeship scheme. That is important. When I started looking at autism all those years ago, one of the interesting things I realised was how valuable people on the spectrum can be. They can make a fantastic contribution to businesses right across the board. Apprenticeship schemes should be looked at quite carefully by the Government. If there is an example in my hon. Friend’s constituency, I am sure that the Minister will take it on board and perhaps even arrange a visit to see how it operates.

Adults with autism were still being overlooked by local services back in 2009. They were falling through the gap between learning disability and mental health services, because no one had responsibility for taking a lead locally to ensure that appropriate services and support were being developed for adults with autism.

The diagnosis can become more complex as a person gets older and often needs a referral to a specialist centre, for which out-of-area contracts are often needed. Some local authorities are doing that, but some, I am afraid, are not. That is why the Autism Act was so important. As a piece of disability-specific legislation, it set a legislative framework for that gap to be closed and for the responsibility to improve support for adults with autism to cover every local area.

[Tim Loughton (East Worthing and Shoreham) (Con)]

I congratulate my right hon. Friend. I remember well the Autism Act and the many hoops that she needed to go through to get it passed. I am sure that she is aware of the findings from the National Autistic Society, which said that just one in three people said that, in their experience, social workers had a good understanding of autism. There is a big cliff edge between children and adults, with services completely changing or becoming non-existent when someone reaches 18. Does she agree that, given the big emphasis now being placed on the better training of social workers, particularly regarding vulnerable children, we need to do a lot better with training social workers to deal with adults as well, in terms of the sensitivities and requirements of people with autism?

[Mrs Gillan]

I agree entirely with my hon. Friend. When I come to talk about the actions I want the Minister to take, I will ask him to ensure that local community care assessors have autism training.

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[Mrs Gillan]

Yes. I rely a great deal on statistics from the NAS, which does detailed work in this area. It is still a crying shame that we have wasted capacity and wasted lives in this area, and we should not stand idly by and let that happen.

Having said that, I am gratified by what has been achieved so far in improving the support at the front line. Just for starters, almost all areas now have someone who is responsible for improving services for adults with autism. It might not seem much, but that development alone has been a mighty step forward. I will also highlight some progress in my own constituency of Chesham and Amersham where there are two clinical commissioning groups and they have agreed that one of them will take the lead on autism issues for the whole county, identifying within the two CCGs a GP who will take work on autism forward. That is the sort of activity that I want to see being replicated across the country.

Elsewhere, I know that some excellent and innovative practice has emerged on issues such as training and diagnosis. Sadly, however, as I am sure other colleagues will testify, progress is still patchy and many areas have not made progress as rapidly as we had all hoped for when the Act was passed.

Research by the NAS shows that, four years on from the passage of the Act, many adults with autism are still waiting—unjustly, in my view—for the support they need. Seventy per cent of adults with autism who responded to the recent NAS survey said they are not receiving the help they need from social services, and more than a third of respondents said that they needed help with simply washing and dressing. In addition, two thirds of respondents said they needed help to prepare a meal and 83% said that they needed support to pay a bill or to deal with letters. Those are things that we all do every day of the week, but in the majority of cases adults with autism are unable to get help from their local council to deal with them.

There is also a lack of clarification between low-level and high-level support. Low-level support services are often right for individuals, as they can prevent them from developing more complex problems and therefore can be almost disproportionately cost-effective. My grandmother used to have a saying about such situations: “A stitch in time saves nine.” That is exactly the principle that we should apply in this area.

The impact of such a lack of support is quite clear. The NAS research indicates that a third of adults with autism have developed a severe mental health problem because they lack support. Of course, the statistics vary slightly, but one statistic I will cite is that just 15% of adults with autism are currently in full-time work. We must urge our local authorities to press on, and the necessary support and impetus must come from Government.

The good news is that we are to have a refreshed strategy—it is the Heineken moment for the Minister. I will turn now to the priorities for that refreshed strategy.

[Tim Loughton]

Before my right hon. Friend downs the Heineken, may I take her back to the alarming statistic she just cited about the number of people with autism in full-time employment? Does she agree that there is an onus on businesses to do more, as many of the smarter businesses have done in the past? Those businesses particularly took on board the sensitivities and requirements of people with autism, and considered how they might be encouraged to apply for a job in the first place; many people with autism never even get to that hurdle. Not surprisingly, many of those businesses turned out to be rather good employers, and we need some rather more enlightened employment practices from some more of our businesses.

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[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.

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[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.