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As the Minister knows, my comments are not personal to him, but I want to make sure that everybody understands what our experience has been. I have already made this point to the Minister during a meeting of the all-party group on autism. Some years ago—in 2001, I think—the Government produced a document called “Valuing People”. In it, they specifically excluded those with Asperger’s syndrome from having access to learning disability teams in social services departments. As a result of the furore that followed, the Government issued a Department of Health circular—I have it here—that is written under section 7 of the Local Authority Social Services Act 1970. The circular has a lot more clout. It is a regulation written by the Department and circulated to local authorities. In this case, the authorities were told that they were required to make availability assessments for people with Asperger’s syndrome. The problem is that a learning disability is defined as having an IQ of less
than 70. However, we know that members of the Asperger’s syndrome population can be of average if not high intelligence. Indeed, I venture to say that many of our academic university departments—particularly those specialising in maths and physics—are highly populated by people with the syndrome. They are very bright, intelligent people.
However, the horror of the condition is that those people may have that academic ability but they still have what is referred to as the “triad of impairment”. There are three characteristics that are common to all people with autism, wherever they are on the spectrum, including their ability to communicate and the impairment of social imagination and interaction. That means that there is the anomaly of people who at first sight appear to have nothing wrong with them. There is no white stick, but, like an iceberg, two thirds of their lifelong disability is below the surface. We know from well- defined research—including papers produced over the years by the National Autistic Society—by many people around the country, that such people, who are bright or of average intelligence, can see how the rest of the world turns and society behaves and try to be part of it. But, however hard they try, there is always a glass wall in front of them that they cannot break through. They are only too acutely aware that friendships, social relationships and all the things that make up how everybody else lives their lives are not available to them. If such people try and try and cannot break through that, there are consequences. The consequence, often among adults in their early 20s, who have made the effort to be part of the world and society, is that they develop serious mental health problems—not because they have autism, but because of their effort to try to be part of society. According to one National Autistic Society report, the suicide rate is 8 per cent. among the Asperger’s syndrome population. That is incredibly high.
We are talking about a condition that involves a spectrum and that on first sight might appear to many people not to warrant the support and attention from the statutory services that would help them through. We are also talking about a lifelong condition that is a life-and-death situation. Some of us have constituents who have experienced the death of an autistic child—not because the child had autism, but because life became too unbearable for them and they gave up. We would all give up if we had to experience such a condition without the right support.
Andrew Miller (Ellesmere Port and Neston) (Lab): The hon. Lady has made an extremely powerful point, particularly in relation to people of substantially above average intelligence. In the work that I do with those in the IT industry, I come across many highly intelligent, even brilliant people who find it very difficult to relate to what the rest of us would call normal behaviour. Right at the heart of this at the moment is the case of Gary McKinnon. I personally think it would be a tragedy if he were extradited to the US, because the courts have failed abysmally to take his Asperger’s syndrome into account.
Angela Browning:
These are very complex cases. In order to support people who fall foul of the criminal justice system—I have been involved in several of these cases—we need expert witnesses whom we can call to present the case for that person. I have raised on the
Floor of the House on more than one occasion my concern about people with Asperger’s syndrome who fall foul of the mental health services when they are inappropriately treated, and that can also involve the criminal justice system. We are talking about support for people who need very specialised expertise, which is available to them in this country.
Many people with Asperger’s are highly intelligent but have difficulty coping with everyday life. The social services and the Department of Health have “tick lists” as to who will and who will not get some support with their everyday needs. Sometimes something as simple as providing a befriending service so that the person has somebody—age-appropriate, it is to be hoped—to have an evening out with socially can make all the difference to their sense of well-being.
Liz Blackman (Erewash) (Lab): Is not part of the issue that the hon. Lady is describing to do with the culture and leadership of the organisations and services that we are talking about? That is a real challenge for all of us in this House to try to move and shift.
Angela Browning: I agree with the hon. Lady, whose knowledge of this subject is of extremely long standing.
That brings me back full circle to where I started, with the Department of Health circular. I am concerned that in order to deliver his promises on regulation, the Minister is going to lean on section 7 of the 1970 Act, as the Department did back in 2001. The circular that it produced told health and social services that they must now take account of Asperger’s syndrome and make assessments for it available. Whenever I am invited to talk to an audience of people interested in autism, I have made a habit of taking about 20 photocopies of this circular with me because increasingly it is totally ignored, yet it has statutory weight behind it. If this is the legislation that the Minister is going to rely on for his regulation, he will have to convince me that he will ensure that this can be implemented. To my certain knowledge—I am not exaggerating—I have given away hundreds of copies of this circular, not just to parents but to professionals, because they were not aware that it existed, and people have been denied access to services as a result. I know that this circular has been used in several court cases that have been brought to try to get packages for people with autism.
I know that many people in the House want to speak on this subject, although I hope they do not speak for too long. I want to give them a chance to do so but will just finish with this point. The Minister will know that the National Audit Office is concluding an extensive report on the subject of autism. As a member of the Public Accounts Committee, I was fortunate enough to visit Sir John Bourn and his team in January last year and ask them if they would report on autism, because the PAC has seen some excellent reports from them in recent years on subjects such as strokes and dementia. The PAC is of course interested in value for money in public expenditure, but those reports on dementia and stroke flagged up not only the economics of dealing with this population of people but the gaps in the system that have been mentioned many times today, and the human dimension of not doing something properly.
I am aware, as I am sure the Minister is, that the report on autism will be published in April. We look forward to its findings. However, if he does not let a Committee sit to scrutinise the Bill, I can assure him that his permanent secretary will appear before the PAC before too long, and we are not an easy bunch when it comes to letting people off the hook. The choice is his—he can either come and face the music in Committee himself or put it off until later in the year and let his permanent secretary do the job for him. I have always believed that ministerial office means that the buck stops on the Minister’s desk. It would be very good if he would think again about allowing the Bill of my hon. Friend the Member for Chesham and Amersham to be scrutinised so that the meaning of the words can be examined and the legislation got right.
Angela Watkinson (Upminster) (Con): I apologise, Madam Deputy Speaker, for not being here at the beginning of the debate. I have just come from one of my local primary schools, where the head teacher commented that the numbers of children being identified with conditions on the autistic disorder spectrum is growing, particularly among boys. There is therefore an absolute need for the provisions in the Bill, and we must get it into Committee.
Angela Browning: I agree about the scale of the problem. I am not 100 per cent. certain in my own mind—I say this as a lay person—whether there is a greater prevalence now than there was before. I think that we are identifying more people on the spectrum than we did before. The hon. Member for Ealing, North (Stephen Pound), who was in the Chamber earlier, asked my hon. Friend the Member for Chesham and Amersham to define autism. It is not new. It is relatively new for it to be talked about, and wonderful that so many MPs are talking about it. However, it is relatively new in this country in this context. It was first identified in the 1940s by a German called Kanner, and at about the same time an Austrian called Hans Asperger identified Asperger’s syndrome. Speaking as a parent who has a child who was born in 1971, I find that people understood autism in its most profound sense of Kanner autism, particularly at the most extreme end of the spectrum where children would have to be looked after for 365 days a year, might self-mutilate and would never have language. However, the other end of the spectrum—Asperger’s syndrome—was known in other parts of the world but was not recognised here until much later, long after we started the statementing of children in schools and suchlike. It is not new in that sense, but it is relatively new in this country for us to have a greater understanding of the spectrum and the condition. That is why we are now recognising that there are more such people, although I remain to be convinced that there are more now than there were.
Angela Browning: I have to let the last word go to my hon. Friend.
Mrs. Gillan: It is not the last word, and I hope that my hon. Friend is not speaking for the last time on autism in this House.
At a time when we are talking about billions of pounds going into banks for bail-outs, does my hon. Friend agree it is important for people outside this
House to understand the financial and economic scale of this problem? In November 2007, the Foundation for People with Learning Disabilities produced a report estimating that the aggregate cost of supporting people with autistic spectrum disorder was already at that time £27.5 billion per year in the UK. That is the scale and the order of the issue that we are discussing.
Angela Browning: Yes, and the Martin Knapp report that was published a little while ago considered the economics and the cost of this situation. I hope that the NAO report will address it as well, and that we will be better informed by that report. The interesting thing about the amount of money that is spent by social services is that when they provide nothing, or something that is inappropriate, at a lower level, they end up dealing with people in crisis later on, which costs them huge amounts of money. I worry about the associations local authorities make with autism—some of them, not all, as some of them are very good. Because they only ever hear about the crisis of autism, which means big bucks, they are terrified of the subject. As for low-levels of input, I mentioned something like a befriending service. Such a service would come low in the list of priorities in the assessments of most social services, but it could be a lifesaver for someone with Asperger’s syndrome.
11.49 pm
Andrew Miller (Ellesmere Port and Neston) (Lab): I would like to start on the theme that the hon. Member for Tiverton and Honiton (Angela Browning) just touched on—the causes and prevalence of this condition—because it is an interesting area. Her instinct is probably correct. There has been no increase in the prevalence of the condition, but there has been undoubtedly an increase in its recognition and diagnosis. That is true of a lot of illnesses. There is a view that certain things happen more frequently today, but it is actually a question of science moving on, and we now have the capacity to diagnose certain illnesses.
I congratulate the hon. Member for Chesham and Amersham (Mrs. Gillan) on introducing the Bill, and I would like to touch on a couple of things that she and I have done in the past—before she slips out for a well-deserved cup of tea. She and I served on the Select Committee on Science and Technology during our first parliamentary Session, and one of the things we looked at was the development of human genetics. In our third report of the 1994-95 Session, we looked at a huge number of conditions that had by then been identified as having a possible genetic component. The order of incidence of most of these was one in 500, or one in 8,000—for example, one in 500 was diabetes type 1.
It is now recognised that autism may have a genetic component to it, but it is a condition with an incidence rate of approximately one in 100. Just a few years ago, a Select Committee, with all the expertise that it has at its disposal, did not bother to look at the matter because it had not come to our attention. It has crept up on this House rapidly in recent years, and it is only people such as the hon. Member for Tiverton and Honiton, with her personal experience, who have really understood what a terrible condition it is, and how prevalent it is. Whatever our disagreements about tactics today, we need to
ensure that we use this debate to help to publicise and improve public understanding of this terrible condition. I congratulate the hon. Member for Chesham and Amersham on helping to make that happen.
Mrs. Gillan: The hon. Gentleman takes me back to those happy days when we were looking at the human genome project. We were concerned that identifying a genetic trait or a certain sequence identified with a disability might lead to people being discriminated against. We were concerned about protecting people and enabling them to have the best services that they could. Is this debate not just a continuance of those days back in 1992 and 1993? In this Bill, we are looking for the vehicle that will provide protection to people we can now clearly identify as having Asperger’s, and also, importantly, to those yet to come.
Andrew Miller: I totally agree. I hope that this debate will help us to get the legislation right, in whatever form it emerges, and to improve public understanding to the degree that we start to influence the way in which other Departments that may not be directly affected by her proposals react when dealing with cases—for instance, those of the bright people to whom the hon. Member for Tiverton and Honiton referred—where people get into trouble with the system. One example of this is when they go to job interviews, a point which the hon. Member for Buckingham (John Bercow) raised in relation to apprentices. Those are hugely important matters.
As I said in an intervention, I strongly believe that we need to ensure that magistrates and judges fully understand their responsibilities when dealing with cases that come before them. That is terribly difficult, because when somebody has done something illegal, the natural position to take is that they must be punished. Surely, however, in a civilised society we ought to take into account people’s mental state and their conditions. After all, nobody knows why the brain develops in the way that it does in the case of people with autism. Not having that knowledge does not give us a justification to lock people up and throw away the key, as society did at one stage. It gives us a responsibility, as a civilised society, to work on finding out the cause of autism. That is an extraordinarily challenging area of medical science, and we should seek to promote it. I hope that my hon. Friend the Minister will ensure that our science budget for that is properly protected and that the Ministry of Justice and the Department for Work and Pensions take autism issues into account.
Mr. Letwin: The hon. Gentleman has now been speaking for three or four minutes, and so far he has not mentioned the Bill or the process involved. Will he assure us that he will not occupy much more of the House’s attention unless he intends to refer to the Bill, so that we do not find that he is trying to talk the Bill out?
Andrew Miller: I have to say that I think the right hon. Gentleman is being rather stupid. I am making a very serious point, and I hope that today’s discussion can be conducted with the correct degree of seriousness. This is a very important matter affecting all our constituencies, and to trivialise it and seek to use Friday games is not the way to handle it.
Andrew Miller: No, I will not give way, because the right hon. Gentleman has annoyed me intensely. I am making a serious point based on my knowledge, and I have no intention of trivialising the debate.
I indicated in my exchange with the hon. Member for Tiverton and Honiton my experiencing of dealing with people working in high-end occupations who are very difficult to manage. I recall meeting a bright young man who was a leading researcher in a big IT company in California. I shall not mention the name of the company, because his name could be identified if I did. His leadership did not want the delegation that was visiting the company to meet him. When I asked why not, the response was deeply worrying. The company employed him and had respect for his abilities, but his leadership said to me, “You can’t meet him because he’s an animal.” His behaviour was particularly odd, but his technical output was extraordinary. Even in that case, the company had not quite got it right. I see the grimace on the hon. Lady’s face, and indeed that is not the way to treat such people. Yes, they should get such high-end jobs, but they need to be treated with dignity. All people with such conditions deserve that.
Autism is no longer attributed to how parents behave and so on, as it used to be: it is properly recognised. There is some interesting work on this on the websites of the NHS and the World Health Organisation. However, it has come to the fore only recently, because of the advance of medical science. The United Nations General Assembly recognised the condition only on 18 December 2007, as a result of a motion proposed by the state of Qatar, and it is among only three illnesses to have been given world awareness days. Those are hugely important changes. Similarly, developments are occurring locally.
Let me now refer precisely to the Bill. The problem is real because local authorities and Government agencies let down people on the autistic spectrum. I have already mentioned the courts, the Department for Work and Pensions and others that can do better. The Minister must ensure, by engaging with his colleagues, that other Departments buy into the policy. I agree that the statutory guidance issued under section 7 of the Local Authority Social Services Act 1970 works only if it is properly policed and followed through rigorously.
I want to ask my hon. Friend the Minister several specific questions. Will there be extra money next year to ensure that proper research can be undertaken into the prevalence of adult autism in particular? Will guidance issued to local authorities under the Bill or section 7 of the 1970 Act have statutory teeth? As the hon. Member for Tiverton and Honiton pointed out, it should not be a case of simply putting something on to the statute book—just having it there does not deliver. Policing legislation properly means resourcing it, and I expect the Minister to confirm that that will happen. Like my hon. Friend the Member for South Thanet (Dr. Ladyman), I am not worried about how things are tactically managed as long as the outcomes are correct. It is important to ascertain how statutory guidance to children’s trusts develops. The hon. Member for Buckingham is nodding. As my hon. Friend said, the guidance that we expect to cover children’s trusts will—by definition, I hope—cover a range of disorders, but we need to be assured today that that includes autism and the autistic spectrum.
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