Adult Autism Strategy

Robert Halfon Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is a pleasure to serve under your chairmanship, Ms Clark. As you know, I always approve of a woman being in the Chair. It is a great privilege to open this debate today. I am pleased to see so many colleagues from both sides of the House joining the debate, which reflects the importance of the subject.

I understand that the Department of Health plans to publish its revised version of the adult autism strategy for England on 2 April, coinciding with world autism awareness day. Today’s debate is therefore timely for us to identify for the Minister what we think and what our constituents have told us are the key priorities for the revision of the strategy. I look forward to hearing from the Minister about the Government’s plans, particularly those to take forward the actions that people require, because we need support for the estimated 460,000 adults with autism in this country.

It is just over four years since my private Member’s Bill on autism became the Autism Act 2009. I still thank colleagues on both sides of the House for making that possible. The passing of the Act was an important landmark in the battle to improve the lives of adults with autism in England. I want to thank everyone, including the people who at first opposed the Bill but who came round to my way of thinking, because they made the Act the first disability-specific legislation ever to be passed in this House.

As we all know, autism is a lifelong developmental disability that affects how a person communicates and makes sense of the world around them. It is a spectrum condition, meaning that it affects people in different ways, making awareness of the diagnosis even more important.

Back in the ’90s, my colleague, Angela Browning, now Baroness Browning—some hon. Members will remember her—made me only too well aware of what happens to adults with autism, particularly if they are being isolated or ignored. Over the years, awareness grew of the needs of adults and children with autism, but even by 2009, there was still no meaningful recognition at Government level of the challenges faced by adults.

[Robert Halfon (Harlow) (Con)]

I congratulate my right hon. Friend on securing this debate on a subject that is incredibly important. Is she aware that 85% of adults with autism in the UK are not in full-time employment? Translating that to my own area, Essex, that is around 7,000 people. The Government have set up Disability Confident, which helps people with disabilities to get into work, but it does not focus on people with autism. My local autism charity—

[Katy Clark (in the Chair)]

Order. Interventions must be brief.

[Robert Halfon]

My local autism charity, Parents and Children Together for Autism, has set up a pilot apprenticeship scheme focusing on people with autism. Does my right hon. Friend agree that that should be rolled out across the country?

[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.

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[Mrs Gillan]

I am grateful for that intervention. This place is about making legislation, both primary and secondary, but for each and every one of us as MPs, it is those individual cases that strike home to our hearts. It is a valuable role for an MP to bring individual cases to the attention of the House, as the hon. Lady has done, because it makes both our laws and their implementation better. I think that we will all have stories of families and individuals in our constituencies who need more help, and there is nothing more moving than a parent coming to plead for help for their child.

[Robert Halfon]

The NAS has highlighted that only 10% of adults with autism receive employment support but 53% would like to receive it. Does my right hon. Friend agree that we need to focus on that issue?

[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.

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[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.

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[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.

[Robert Halfon]

I thank my hon. Friend the Minister for giving way. I gave the figure of 85% of people with autism not having full-time employment, and I mentioned the apprenticeship for autism started by my charity, PACT for Autism. Will the Government’s apprenticeship ambassador, my hon. Friend the Member for Harrogate and Knaresborough (Andrew Jones), who is present, work with the Minister with responsibility for apprenticeships to look at introducing such a scheme and rolling it out across the country?

[Norman Lamb]

My hon. Friend beat me to it, because I was about to refer to his comments on apprenticeships. I am interested in that. I am proud of what the Government have done on apprenticeships in general, but their use for people with autism is an interesting area. I noted the points he made about the scheme in his local area, and I am happy to consider it further.