Autistic Spectrum Disorder
The final item of business today is a members' business debate on motion S1M-1436, in the name of Lloyd Quinan, on autistic spectrum disorder provision. The debate will be concluded without any question being put. Nineteen members have asked to participate in this debate. Having checked that the minister is available, I am prepared to accept a motion without notice to extend the debate for up to 30 minutes.
Motion moved,
That the debate be extended for up to 30 minutes.—[Mr Lloyd Quinan.]
Motion agreed to.
Motion debated,
That the Parliament notes that the incidence of Autistic Spectrum Disorder has rapidly increased in the last ten years; further notes the challenge faced by parents, carers and organisations such as the Strathclyde Autistic Society regarding the lack of appropriate provision, and urges rapid action to address and rectify the current situation.
I would like to thank those who are responsible for securing this debate, including the members of the cross-party group on autistic spectrum disorder, many of whom are in the gallery. I thank them for their input and for attending the Parliament today. It is the valued determination, guidance and support of the professionals, the parents and the carers that has brought this debate to the Scottish Parliament. I would also like to thank the Strathclyde Autistic Society for its contributions to the debate, and the children who took part in Project Ability's Saturday group, whose work is currently on display in the Parliament foyer.
As the convener of the cross-party group on autistic spectrum disorder, the people who are involved in the group and the Scottish Society for Autism have developed in me an insight into this condition. I am sure that, due to the enormous amount of media coverage, many more people will be aware of the possible link between the condition and the measles, mumps and rubella vaccine. Along with my many colleagues who have stayed for this debate—it is moving to see so many members here—I hope to address many issues beyond that.
The time has come to address the issue of the provision for and the prevention of autistic spectrum disorder, and to call for a long-term strategy of research and education. Most important, we must call for the provision of support and respite for parents and carers. As many of us know, autism is an extremely complex condition. The effects can range on the spectrum from the very mild to the very severe, which may mean a profound difficulty in communicating with the rest of the world.
The following is a quotation from a book by Nick Hornby, whose son is autistic:
"there is a child who slept for maybe five or six hours last night. (He sleeps five or six hours every night, in fact, which means that if he can be kept awake until, say, nine, then he will wake up at two or three.) He is upset and frustrated, so he screams, and his parents, who have maybe slept for three or four hours, feel a mixture of exhaustion and depression and panic—they live in a small flat, and the walls are thin, and they know that they are not the only ones who are disturbed on a nightly basis. It is six hours until one of them starts work (the other would like to work, but in the absence of any suitable school place for the child, it is not possible), by which time the child will have attempted to hurt himself by hitting himself hard and repeatedly on the head, and maybe thrown some food around, and refused to use the toilet and ended up soiling a carpet, and demanded in the only language that he has at his disposal (one word, repeated with increasing force and volume) to go out to the park, even though it's pitch black outside . . . and then daylight comes, and because the local authorities don't as yet have a suitable school place for your child (although they're working on it, they promise, and even right now they are having meetings about possibly starting up a school which may well be open by the time your child is seven or eight or ten), then you're looking at another ten or twelve or fifteen hours of the same thing, alleviated only by the prospect of the child falling asleep—sleep he shouldn't really be having because it will make things worse the next night, but it's your only time off in the whole day. And there's nowhere to go, and no one to complain to, and there's no money in the bank that can be used to buy some respite care, because you're down to one income anyway."
I do not want to use this debate to reinforce statistics that have been produced in the chamber many times over the past 18 months. We are all aware that there has been a remarkable and alarming increase in the incidence of ASD, for which there are many theories, including better diagnoses and testing. However, the fact remains that these children and adults have a condition and we, as a Parliament, and the Government must take responsibility for them.
It is an unfortunate fact that current provision levels are far from satisfactory—in fact, they are shocking. We must address diagnosis, education, training, respite care and support as well as the often-missed element of ASD: adults who have autism. Autism does not go away when one reaches majority.
According to a study carried out by the National Autistic Society,
"frontline health professionals appear to have little knowledge or awareness of autistic spectrum disorders".
The study goes on to say that 65 per cent of people saw three or more professionals before they got a firm diagnosis, and many experienced a vague diagnosis of the severity of the condition, followed by either limited or no support after diagnosis. That intolerable situation requires urgent action, but if there is little training, how can we expect professionals to know about ASD?
On education, it is without doubt that, in many cases, the Government's drive towards mainstreaming is admirable. Certainly it is a positive step. However, it is not a positive step for those with ASD. The severity of the condition can be extreme and many parents have assured me that a mainstream classroom environment is not appropriate. In Scotland, we are fortunate to have two schools that are held up as models of best practice: Struan House School, which is run by the Scottish Society for Autism, and Daldorch School, which is run by the National Autistic Society. The schools are staffed by highly skilled professionals who have both the time and the knowledge of the condition to allow the child to explore, grow and learn at their own pace, rather than at a pace set by the timetable of a state-administered school.
It is a fallacy to say that autism is a childhood condition. A conservative estimate for the Lothian area alone is that there are 223 adults who suffer from autism. What resources are in place for those people? There are few professionals who work in this field. Other than the work that is carried out by the Scottish Society for Autism, there is only one professional in Lothian. Where does a 72-year-old parent find a baby-sitter, for want of a better term, for a 50-year-old man? It is clear that we must address those issues because if we accept that there has been a massive increase in the number of people who suffer from ASD, we can look forward to a large number of adult sufferers. Adults with ASD have been forgotten by society. I admit that I wandered around not considering that adults could have autism. We may think that autism is about children, but children grow up.
I do not want to take up any more of the debate, as so many members have given up their time to be here. I know that they all wish to express their concerns from their constituencies and regions, and to raise individual cases.
The terms of my motion must be addressed, and I look forward to the deputy minister's response. I hope that he will give us a commitment to address genuinely a problem that is getting greater as each day goes by. I ask the deputy minister for that commitment not only on behalf of MSPs but on behalf of the parents, carers and professionals in the gallery.
I too congratulate Lloyd Quinan on securing the debate tonight and recognise his sincere commitment to trying to raise awareness about autistic spectrum disorders and to secure a much-increased level of service provision for children, their parents and their carers in Scotland.
As vice-convener of the cross-party group on ASD, I want to make a contribution to the debate tonight and add my support to Lloyd Quinan's motion. As a constituency MSP for Coatbridge and Chryston, I have a large case load of wide and varying issues. However, an increasing number of parents have been seeking my assistance with the difficulties and challenges that they face on issues surrounding ASD, which range from worries over the triple vaccine, diagnostic difficulties and education issues through to problems with the criminal justice system. The main common issues are the lack of suitable support provision and the need for professionals across various agencies to work together to see the whole picture. Too often, professionals seem to have a lack of knowledge about ASD and an inability to work together to assemble all the pieces of the jigsaw and provide the best support for the individual child or adult.
I am sure that my colleagues will raise the issues that I would like the minister and the Scottish Executive to address. Lloyd Quinan has already raised some of them. I want to concentrate on a specific issue involving educational opportunities for young children. I am becoming increasingly disturbed by the number of parents approaching me to ask for my intervention with their local authority in a desperate attempt to secure the education that they feel is appropriate for their child. Obviously, I hear only from the parents who are unhappy at the provision that is being offered; there are no doubt many who are satisfied with the school that has been allocated for their child.
The nature of this disorder is such that it is referred to as a spectrum. Accordingly, there are different complexities in the spectrum and each child must be considered as an individual. Just because an excellent school exists that suits the majority of youngsters with ASD does not mean that it is appropriate for every child. I was going to intervene on Lloyd Quinan, but he was winding up. I must point out that local authorities provide some excellent schools that do good work in this area. One in Cathie Craigie's constituency of Cumbernauld, St Lucy's primary school, springs to mind.
I want the minister, in his summing-up, to pay some attention to the plight of parents who know their child's needs and abilities but fail to convince the education authority to enable their child to attend the school of their choice. Such parents face the prospect of going through the authority's appeal procedure and, if that fails, the long, arduous, daunting and often costly route of legal proceedings.
In June last year, I asked the Executive to agree that the Standards in Scotland's Schools etc Bill should set the tone to enable parents—specifically those whose children have special educational needs—to have a greater say in the education of their child. I further raised the point that that should see an end to circumstances under which parents feel that they have no choice but to take legal action against the local authority to have their child educated in the school of their choice. I will quote briefly from the response. Peter Peacock said:
"It will always be regrettable if the relationship between parents and the local authority breaks down to the extent that parents feel that they must take court action. I would always seek to avoid that."—[Official Report, 15 June 2000; Vol 7, c 397.]
Perhaps the minister could comment on how he intends to address that issue, which I am being confronted with by an increasing number of my constituents.
In the spirit of the members' business debate, I will conclude on a positive note and commend the Executive on its decision to implement a key recommendation from its document "The same as you?" and develop a national network for people with an autistic spectrum disorder. Clearly, that is a positive start to recognising and, I hope, addressing the issues of lack of provision and the need for joined-up working by well-trained professionals.
I congratulate Lloyd Quinan on securing this debate on a condition that causes distress to many families and is much misunderstood. Through the good work of the Scottish Society for Autism, we have more understanding of the condition and know that autism is not one singular problem but covers a wide range of conditions. One such condition, in the higher spectrum of autism, is Asperger's syndrome.
Those with Asperger's syndrome often have overlying conditions and, unless the sufferer is treated by professionals with experience of treating Asperger's, they are often misdiagnosed, put in inappropriate facilities and treated with medications that aggravate the syndrome. I have recently been contacted by the family of such a person in Fife and I use his circumstances with their full knowledge and permission. Their circumstances highlight the lack of facilities in Fife and in Scotland for diagnosing and treating Asperger's syndrome. Their son is 24 years old and is currently detained under the Mental Health (Scotland) Act 1984 in Stratheden Hospital. He came through the normal education system with his parents and teachers being aware that he had speech and social interaction problems. Despite those difficulties, he gained a place at Glasgow School of Art. During an organised student trip to Paris in 1996, he experienced an exhibition of graphic proportions. Later on that trip, he was assaulted and received a head injury, which was not treated at the time. Shortly after that distressing experience, he started to show signs of mental stress.
Since then, the family has been trying desperately to get appropriate treatment for him. It was not until 1998 that a diagnosis of Asperger's syndrome was made. To date, he has not received any treatment for Asperger's, because of his psychosis. Attempts at controlling the overlying psychosis have been made by treating him with sedatives. He has been detained under the Mental Health (Scotland) Act 1984 since late 1999. Since then, he has continued to receive high doses of neuroleptic drugs, which have the effect of chemical lobotomy.
He now has a number of physical deformities and other medical conditions—all are probable side effects of the drug treatment. The published papers on the subject that I have read indicate that sufferers of Asperger's respond best to one-to-one therapy in a quiet, stabilised family environment. This particular sufferer has been placed in a secure unit, with people suffering from manic mental disorders. His room has been changed five times in six weeks, and only in the past week has he been allowed daytime access to his dormitory.
He does not have access to a smoke-free environment, nor has he any private toilet facilities. His family and visitors have no access to smoke-free private facilities, and have to ask a favour to use the staff toilets. He has become totally disorientated and has been left extremely agitated, which aggravates the Asperger's syndrome. Following years of the parents' trying to persuade Fife health care staff of their son's underlying problem, he is finally to be examined in a 30-minute meeting with a specialist, who is being flown in from England tomorrow.
Few people can be unmoved when faced with tales of misery such as this. There must be better ways of treating people in the 21st century. We ask the minister to ensure that resources are targeted, to pay heed to the pleas of the parents and to provide facilities, so that sufferers of Asperger's syndrome and autism can receive the treatment—and their families the support—that they so desperately require in order to lead socially acceptable lives.
I wish to associate myself with Lloyd Quinan's excellent initiative, and I would like to indicate the all-party support for action in the sphere of autistic spectrum disorder.
I will make three points. First, there are, as in many areas of public life, very good voluntary organisations that have done a lot for people suffering from autism. They have very few resources, but have achieved a great deal. I hope that the minister can assure us that funding for the parts of the voluntary sector that deal with autism will be increased. They provide good value for money.
Secondly, there is a problem with autism, ME and other relatively recently researched conditions, especially when the behaviour associated with them comes and goes. There is a frequent, traditional view that the person concerned might just be being difficult, slacking or acting in an upsetting way unnecessarily. There needs to be an education of the public, perhaps even of some people in the educational and medical worlds, so that they might take the issues involved more seriously and sympathetically than they do. Autism is not a visible defect. If one of us were to come into this chamber with a broken leg, or if news got about that one of us was suffering from cancer, everyone would be duly sympathetic, and would take account of that. If we suffered from one of the problems that causes variable behaviour, people might be distinctly less sympathetic. We have to concentrate on that point.
Thirdly, in the days before this excellent establishment was set up, I was picked up—I suppose you would say—on a tube train, then the best way of getting from Westminster to Heathrow airport, by a very bouncy lady, who was promoting a way of dealing with autism that she thought had worked very well in certain cases. She had experienced enormous difficulty in getting the powers that be to take the condition seriously—because the method was, I think, invented by an American. Therefore, by definition, it was suspect. I honestly do not know whether her method was good or not, but I tried to promote it with the UK minister of the day.
We should not pooh-pooh imaginative ways of trying to deal with such disorders and help people in their trials. Some of the experiments may not succeed, but if there are exciting new ways of treating these problems, I hope that we will adopt them and that the innate conservatism of the British people will not stifle all initiative. I hope that we can do more to help people with this great problem. Parliament is at its best on occasions such as this when everybody works together.
I have three minutes, I gather, to say a great deal. I start by congratulating Lloyd Quinan on procuring the debate for the Parliament, by thanking all the members who have stayed for the debate and by paying tribute to the people in the gallery.
If people have read the Scottish Parliament information centre paper on the subject of the debate, they will know that this is not a subject to which I have come lately or lightly. It is important to put this subject in the context of finding resolutions to a very complex and difficult problem.
I will address the issue of public confidence. I have no doubt that MMR will be a very serious issue. Those of us who listen to the radio, read the paper and watch television know that the issue has become prominent in the press and other media. A responsibility has been placed on us as legislators to try to restore public confidence.
No member here would argue against immunisation. We all pay tribute to the work that is done by experts and researchers who have eradicated diseases that we all regarded as killer, disabling or debilitating diseases. I would like this debate to restore public confidence in our health service.
The recent figures that are given in the SPICe paper show that there has been an increase in the number of young people who are defined as suffering from ASD. A problem that we face is whether the reason for that increase is diagnostic or causal. I draw the minister's attention to a written answer that I received from Mr Hutton on Thursday 21 December in the House of Commons. He stated:
"The number of children identified as having autism is increasing. Although the full explanation for this is not clear, it is at least in part—
I emphasise "in part"—
"due to improvements in diagnosis by the clinical professions, including child mental health specialists and community paediatricians."
We have to take that into account. Will the minister say what new diagnosis has been introduced that would lead to the idea that the explanation is diagnostic rather than causal, what diagnosis is being done in Scotland, and what money is being spent?
Likewise, what is the Scottish Executive doing on research into this problem? From a written answer to another question that I asked in the House of Commons, I know that
"The Medical Research Council (which is largely funded by Government) has recently invested £344,000 in one of the largest studies of the causes of autism ever attempted. The researchers will study whether autistic children have a history of other conditions or medical problems such as problems during birth".
Where does the Scottish Executive stand on that issue? How will it link into that MRC study? Will it ensure that the Scottish dimension is wholly involved?
MMR has caused a problem with public confidence. I know through constituents, but also from family and friends, of people who are talking about not having the MMR done because of their fears. Ms Cooper, in a reply to a parliamentary question, again on 21 December, said:
"The importation of unlicensed single antigen measles and mumps vaccines is restricted by the Medicines Control Agency under the Medicines Act."—[Official Report, House of Commons, 21 December 2000; Vol 360, c 278-79W.]
However, it is my understanding that the single antigen vaccines are allowed for named individuals and therefore that single vaccinations can be had through payment of money either to private practices or to hospitals. I believe that that is occurring in Edinburgh. What happens to the policy of social inclusion if people are travelling to Paris or paying money to have that choice? That choice is not available to everyone.
I hope that the Deputy Minister for Health and Community Care will be as compassionate in his response as Lloyd Quinan and others have been in what they have said in this debate.
I will try to be brief as we have already heard a number of very thoughtful and moving speeches. Lloyd Quinan and Elaine Smith outlined the very real difficulties that carers and parents of young people with autism face in their day-to-day lives. I want to take a slightly different perspective.
As a former art therapist, I want to say that all is not doom, gloom and despondency. Nobody can have failed to be moved by the visual display and demonstration of ability, as well as disability, currently on show in the Parliament foyer. Donald Gorrie was right to say that we need to be imaginative. Art, music and drama therapy are not add-ons after other forms of caring; they are an essential part of working with people with autism and a range of other disorders or problems.
As has been said, we need also to remember that with earlier diagnosis there is an opportunity to work with people at a much younger age. We ought to look at how we do that and how we resource it. I was disappointed to find a local authority social worker in my constituency having to find money from a charity to pay a voluntary organisation to do some of that work. That should be addressed.
I will mention Daldorch school, which is in my constituency, only briefly as Lloyd Quinan has already mentioned it. It is seen as a centre of excellence and people travel from all over the UK to attend it. However, that is a very small provision in the overall scheme and it would be better if people did not have to travel so far—although they are very welcome in Carrick, Cumnock and Doon Valley. Surely it would be better to have that sort of provision on people's doorstep.
My final point is about the need for a strategy from the early years through to adulthood. With an increasing number of people being diagnosed, do we really have the provision to support young adults? Very moving publications have been written by people with autism. The comment that sticks in my mind was made by a young person who said that all they wanted from life was a roof over their head, a job and some money in their pocket—the same as everybody else. That is what we should be striving for and I hope that the minister will assure us that the Scottish Executive is working in that direction.
I very much welcome this debate on the lack of appropriate provision for people with ASD and their parents, carers and organisations. I spent some considerable time during our holidays reading the papers on MMR and autism. I am sure that everyone will understand that, if it were otherwise, I would have discussed any conclusions I have come to with the Health and Community Care Committee.
The thing that struck me most in all the papers and newspaper articles was the parents' letters, and their concern and guilt that they are not doing enough to provide support and care for their children. That struck home, because when support services are not in place, parents take on themselves the responsibility and guilt for that provision. It should be our responsibility to provide that.
I believe that good provision of care can be addressed only by good diagnosis. Without consistent and thorough diagnosis, we cannot understand the problem or measure it, let alone try to address the needs of the individual. Many people have mentioned the fact that we are now much better at diagnosing autism, but I truly believe that there is vast under-diagnosis of autistic spectrum disorder.
I understand from the SPICe note that the Scottish Executive has funded a project in the Borders, which is devising good practice in diagnosis of autism and other disorders. I hope that we will all receive a copy of the external report so that individual MSPs can check that the provision in our areas is as good as the best in Scotland.
In a debate last year on pre-school education, Peter Peacock gave me an assurance that he would consider integrating a diagnostic test into the procedures for nursery children. That would be a great help and relief to many parents and would address the support and needs of their child before precious time is lost.
It is tragic that so many people go through such a long part of their lives and miss so many opportunities simply because we cannot get our act together to diagnose their problems. Nick Johnston highlighted that problem with the example of a person who was diagnosed at 22. When I was a lecturer in further education, we often referred students to educational psychologists. Some of them had autistic disorders and a great many of them had dyslexia. It was a tragedy that many were in their 20s, 30s and 40s and had slipped through the whole educational net before a further education lecturer—without any training—spotted something.
It is incumbent on the Scottish Parliament to continue to monitor and scrutinise the 29 excellent recommendations in "The same as you?", which cannot be allowed to gather dust on the shelf. I would like to focus on two points in the document. Recommendation 28 suggests that the Scottish Executive
"should commission research into the number of people with learning disabilities in prison or in secure accommodation and the arrangements for assessing and providing them with care."
That would be an excellent example of joined-up government.
The other point is the personal life plan. I understand that, in September, the Scottish Society for Autism and the National Autistic Society provided the information to develop a national network for people with ASD. I ask the minister to assure the Parliament that that is progressing. Will he also update us on the excellent recommendations in "The same as you?", which address the whole subject of the debate?
I must remind members that if their speeches run over four minutes, other members might not be called.
I will be as brief as possible. There can be few, if any, letters and visits to surgeries that are more frustrating and heart rending than those that we have all received from parents who are experiencing a mixture of guilt—at being unable to provide for their children—and anger at the causes of the autistic spectrum disorder from which their children suffer. They feel guilt because of their personal inability to provide services for their children. They feel frustration—as do we—at the lack of resources and support services.
I must pay personal tribute to Jane Hook and the Scottish Society for Autism. Without them, there would be nowhere to go. We would not know where to go if we were not able to contact the society and people such as Jane Hook and ask for help. MSPs and councillors having to go to the voluntary sector for help is not a state of affairs that can continue.
The Government and the country have to develop better support services. The minister has an unenviable task in replying to this debate. I do not believe that it is something that he looks forward to, given the base that we are starting from, because there is little in the way of a support network and services. That has to be addressed, and I hope that we receive some assurances today that there will be serious funding to develop networks and services across Scotland. That is the primary aim of this debate—to get that funding and support in place.
I will use my final minute to address the other part of the problem, which is the fear that others, such as Margaret Ewing, have referred to—the MMR vaccine. No one in this chamber can say for sure that there is a causal link between the MMR vaccine and autistic spectrum disorder, but neither can anyone in this chamber say that there is no causal link. There is increasing evidence to suggest that the MMR vaccine may be, if not solely, at least partly responsible for the increased incidence of autistic spectrum disorder.
It is from that point of view that I appeal to the Deputy Minister for Health and Community Care at least to consider a programme—even a five-year closely monitored programme—of single vaccines, which would be linked to a massive publicity campaign so that the single vaccine campaign did not lead to a fall-off in vaccination of children whom we wish to be immunised. If we link a programme of single vaccines to a massive and properly resourced publicity campaign, we can address some of the fears. If we find after five years—because we have recorded data and examined it—that there is no link between the MMR vaccine and autistic spectrum disorder, we may wish to reconsider the triple vaccine. However, it would be worth pioneering that programme in Scotland in order to put at ease the minds of many parents.
I too congratulate Lloyd Quinan on his success in securing this important debate and on the hard work that he and the vice-convener of the cross-party group on autistic spectrum disorder, Elaine Smith, have put into setting up that group, which is already beginning to impact on this Parliament.
I am greatly encouraged by the attendance at this debate. It is a good thing, because there are a number of current issues about this subject that are screaming out for the attention of the Parliament and the Government, not least the fact that we do not know the true extent or nature of the problem that we are dealing with because the data that we have are not uniform, reliable or in any sense comprehensive.
In fact, the SPICe note on autistic spectrum disorder uses data from general practitioners in continuous morbidity recording practices, which is one of the key sources of data on this condition, yet the GPs taking part in that system cover only 8 per cent of the Scottish population—so the data that we have are more likely to mislead than be helpful in determining what we need to do to deal with this problem.
The 2000 schools census is another example of unreliable data. It claims that there are 16 school-age pupils with autism in Dundee, yet in 2000 I attended an open day in the city that was organised by a group of local parents who had children with autistic spectrum disorder. It was attended by more than 100 parents in the city whose children have the disorder. The only conclusion that I can come to is that the school census data are wrong, and because they are wrong the provision that is made for children, parents and carers in the city is wrong as well. That is not a criticism of Dundee City Council, which is doing the best it can in difficult circumstances.
A resource location for children of primary school age with autistic spectrum disorder was set up for the first time in August 1999. A second resource location for pupils of secondary school age was opened in August 2000. They were good steps forward from the city council, which is strapped for cash. However, if we are honest, the provision was made only because of pressure from parents who campaigned in the city and who were not prepared to tolerate the lack of dedicated provision for their children. I pay tribute to people such as Kim Nicoll and Jennifer Kennedy, who were at the forefront of the campaign to make provision for autistic spectrum disorder in the city of Dundee.
There is still nowhere near enough provision. There are not enough places in resource locations. When youngsters leave secondary education, they are on their own. No provision is made. Nothing like sufficient respite care is provided for parents in the city who need it. The motion is not only necessary, but essential. If the Parliament is serious about social justice, it must include in its definition of social justice youngsters and adults with autistic spectrum disorder and their parents, and do something about it. I hope that the minister will do that at the end of the debate.
Many members have been involved in the campaign for acknowledgement and understanding of and provision for autism and autism sufferers. I hope that the Presiding Officer will not mind my opening by mentioning the role that he played as George Reid MP in the 1970s. I hope that I do not embarrass him by pointing out that he played a major part in establishing the Scottish Society for Autism in Alloa. Thereafter, he continued to work for the campaign through Autism-Europe and the World Autism Organisation.
As with Elaine Smith, Nick Johnston and many other members, several constituents have consulted me about the issue, to which I have come lately—more lately than my wife, who has campaigned on it for a long period. I have been struck and devastated by the experiences of parents at the hands of local authorities—which are not always as sympathetic as we all recognise they should be—and in the daily grind of their lives.
I will canvass only one issue. A clear question exists, to which the Governments in Westminster and Holyrood must respond. Do parents have the right to have a single vaccination? The Government's response—saying that there is an absence of causal evidence—is wrong and will not be sustained. As Tommy Sheridan said, the important point is that there is no evidence of a lack of a causal link.
The approach that I adopt and that I imagine others would advocate is that of the precautionary principle. That is the approach that the Government in Westminster has advocated in respect of the BSE crisis. As I understand it, even now there is no proof of a causal connection between human consumption of BSE-infected material and new variant CJD, yet the Government acted on the precautionary principle. Therefore, the policy that the Government in Westminster has adopted for this issue is at odds with the policy that it has pursued for the BSE crisis.
For that reason, the current policy is unsustainable. I hope that the minister will deal at length with the argument, which has been made at least three times. I make the plea that if devolution is to mean anything worth while, it should mean that we respond to the concerns of the people who put us here. A programme of single vaccination, carried out with great care and full consultation with all the relevant authorities, would show that devolution works.
Like Fergus Ewing, I come late to the issue. Only as a member of the Scottish Parliament have I come face to face with the cases that we are dealing with today.
Good work is going on in the Borders. The Borders Autism Support Group is trying to raise awareness and a pilot study of diagnosis is taking place in the Borders service, but constituents whose family members suffer from ASD still come to us with concerns. Such people, through frustration and sadness, will cry in front of us in our surgeries because they feel that the system is not working for their family and their child. Since Christmas, four families have come to me on the subject, some talking about the MMR vaccine, others worried about their toddlers.
There is a youngster who has been well treated in a language unit in a primary school with small classes. The parents have been pleased with the situation. Now, however, for various reasons—I am not blaming the local authority as such—the local authority wants to put the child into the mainstream school and the parents are not sure whether there will be enough physical support and whether the structures that he needs will be present. Lloyd Quinan pointed out the implications of the presumption of mainstreaming, but there needs to be a sensitivity to the needs of the youngsters.
Another case that came before me concerned an individual who had recently left school. His family had moved into a new housing association house which, because of the condition of the young person, needed adaptations. The housing association, however, does not seem to be treating the situation as seriously as it would if the individual suffered from a condition that is recognised as having an absolutely medical cause. Because the condition is seen to be slightly vague, the adaptations do not get done until some time in the future when they can be afforded. In the meantime, the family suffers greatly.
The final case that I will mention concerns a young man in his 20s or early 30s who was well treated in the residential facility in Alloa. The parents wanted him home because the family is close, but the strain of the behavioural problems was too much. There was inadequate respite care and the situation became unbearable. He moved into a local facility but that is now to be closed. I hope that this will not happen, but the young man may be moved to the place that the health trust believes is secure enough for him—an establishment in England. His parents live at one end of my constituency and the young man is being taken away from his loving parents and moved to Northumberland. That is not happening due to any wickedness, but because the authorities believe that that is the only place that can cater for him. That is not good enough, as his will not be the only such case.
We must do more across Scotland. We need more facilities and more funding. I hope that today's debate will change the atmosphere. The number of MSPs who have attended the debate, the strong feelings that have been expressed and the spread of political will could change the whole attitude towards this area of disability.
I too welcome today's debate and thank Lloyd Quinan for raising the issue. I would like to echo Ian Jenkins's remarks and say that the debate is part of the process through which the Parliament and society more generally can raise awareness of autism. I am glad that many constructive points have been made across a range of issues.
I will concentrate on education in early years. I want to emphasise the importance of early diagnosis. Earlier this week, I was talking to the mother of a young autistic boy who told me a disturbing, but familiar, story. Her child was not diagnosed until he was six years old. It took a further six months for the initial diagnosis to be confirmed. It would have taken even longer if she had not made a nuisance of herself and insisted on an early appointment with the consultant. When her son was diagnosed, that was it—there was no support and no follow-up. No one was there to tell her what to do—until she got in touch with the Scottish Society for Autism, which was able to help her.
Early diagnosis is essential. As soon as that mother found out that her son was on the autistic spectrum, she and her husband were able to adjust their behaviour towards him. No longer did they treat his behaviour as defiant or aggressive, and their relationship improved immediately.
It is quite staggering how many adults remain undiagnosed, possibly receiving inappropriate treatment or, even worse, ending up in the criminal justice system because of a lack of understanding. It is not possible to diagnose autism from birth, but Mary Scanlon referred to the checklist for autism in toddlers—or CHAT—which is recognised as a reliable method of screening from the age of 18 months. It is still little used in Scotland, and I urge the Scottish Executive to consider ways of encouraging greater awareness of CHAT, strengthening early assessment and therefore early intervention.
The problems do not end with diagnosis; they seem to begin there. A story that is familiar to me and probably also to other members concerns the difficulty that parents face in securing the appropriate educational and health provision for their child. Many families rely on the record of needs—that is, if they can get one for their child. Depending on where someone lives, trying to open a record of needs can be a dispiriting and exhausting affair. Local authorities, which should be seen as part of the solution to a family's concerns, sometimes end up as part of the problem. Psychologists, who should be impartially assessing a child's needs, can be seen as protecting an authority's resources. The assessment itself tends to vary according to the resources available in the locality, rather than according to the needs of the child, creating a geographical lottery. The system needs to be overhauled. I hope that the report of the Education, Culture and Sport Committee on special educational needs will address that point.
There are many other issues that I could mention, such as the lack of help for parents at holiday time. In some households, the end of term becomes something to be dreaded rather than looked forward to. There continues to be difficulty surrounding the transition from primary to secondary education and there is lack of awareness of autism and of teacher training to deal with the needs of autistic children at secondary level. Many families face difficulties in securing adequate resources to help them cope by giving them respite or by securing a suitable education for their child.
I hope that today's debate will be seen as just part of the process of raising awareness of autism and that we will have the opportunity to return to the subject in Parliament on many more occasions. I recognise the Executive's commitment to tackling the problem, as outlined in "The same as you?", the Government's review of services for people with learning disabilities. I look forward to hearing the minister's response to many of the points that have been raised this evening.
I call Brian Monteith. During his speech, I shall take advice from the SNP as to which one of the three proposed SNP speakers is to fill the last spot.
I thank and pay tribute to Lloyd Quinan. I do not mean to be patronising in any way when I say that he made a particularly eloquent speech. He has a reputation for being a bit of a firebrand, but he made a heartfelt and touching speech. I mean that sincerely and I pay my complements to him and to the effort that he has made in securing this debate, in achieving cross-party support and in attracting such good attendance this evening. This is an issue that attracts controversy, because people care passionately and deeply about it—as they should. We have heard many touching stories this evening.
As education spokesman for the Conservatives, I want to touch on a slightly different aspect—the Riddell report on special educational needs. There is a tendency in education to follow fashions and trends and often we see things go full circle. The Education, Culture and Sport Committee is considering special educational needs and I hope that its inquiry will stress the importance of parental choice. There is a danger in always going to educationists and asking them how education should be run, but I believe that parents should have a strong say because they will overcome fashions and trends. The idea that inclusion is integration is wrong. To me, inclusion does not mean integration; it means trying to find the most appropriate provision for an autistic child. That means a variety of choices being available to parents so that they can choose for themselves.
Ken Macintosh mentioned the record of needs. I believe that there is a conflict of interest in that the local authorities decide on the record of needs and the assessment and they are also the providers. We must consider that carefully. I would be interested to know whether there is a conflict under the European convention on human rights. I do not believe that one can make recommendations and make provisions.
Finally, I want to touch on the precautionary principle as regards the MMR vaccine. The Conservatives have no particular party view on MMR. However, one thing that we all understand about this Parliament is that we can dare to be different; we can make our own choices and recommendations in Scotland. It is odd that we can have a policy on banning beef on the bone in relation to the contraction of CJD—people are 250 times more likely to be hit by a bolt of lightning than they are to contract CJD by eating beef on the bone—yet we do not yet have a move towards individual vaccines. I am sympathetic to such a cause, because the precautionary principle suggests that that is the way we should go. I thought that Tommy Sheridan's idea was interesting and could be developed.
This Parliament has the opportunity to be different. I hope that we will dare to be different—perhaps not tonight, but following the report on the Health and Community Care Committee's inquiry—and have a different policy in Scotland on this issue.
I call Irene McGugan, who will be the final member to speak from the back benches. I apologise to Christine Grahame and Brian Adam, who sat faithfully through the debate, but who will not be called for reasons of time.
I want to quote briefly from the Scottish Society for Autism's annual review. Speaking at the Autism-Europe congress 2000 that was held in Glasgow in May, George Reid MSP—Deputy Presiding Officer of the Scottish Parliament—said:
"The battle for human rights is not won, so long as parents are denied early access to diagnosis and assessment of their autistic children; so long as that child has no proper access to education and other support suited to his or her needs; so long as there are no facilities for independent supported living; so long as there is no respite care for parents; so long as inclusion is seen as a bureaucratic duty and not the tolerance of diversity and the right to be different."
That seems to me to be a fairly accurate description of where we are. For example, research confirms time and again that respite care is an overwhelming need of families who care for an autistic child. Care for such children is a relentless task and it should not be too much to ask to have a break now and then. However, it is notoriously difficult to provide that kind of resource, not only because of the usual financial difficulties, but because autistic children often have communication difficulties that make it difficult for other people to look after them. Most important, they do not respond very well to change of any kind. Therefore, I appeal to the minister for more support to be made available, particularly home-based support and not just residential provision.
I hope that we will remember at all times that children are, first and foremost, children. All provision, including recreational facilities, play provision and events—all the opportunities that are available to other children—should be accessible to children with autism. Measures should be taken to ensure that that is the case. We must aspire to fulfil the terms of the European Parliament's written declaration on the rights of people with autism if we are to win the battle for human rights to which George Reid referred.
It will be impossible for the minister to respond in detail to all the points that were raised in the debate. I call Malcolm Chisholm.
I congratulate Lloyd Quinan on securing this important debate. His motion reflects the interest and concern that many of us have in ensuring that people with autistic spectrum disorders are correctly diagnosed as early as possible and that they and their carers receive the support that they need to live more healthy and enriched lives.
As Lloyd Quinan graphically described, autism is a devastating condition. It is without clear origins and it is poorly understood by scientists and the public alike. There is scant evidence of remedies that work and little appreciation of the lifelong consequences, which Lloyd Quinan highlighted.
For that reason, the Medical Research Council announced in April last year that it would fund a major research project to find out what causes the condition. That project, one of the largest ever undertaken on the subject, will last two years and will involve scrutiny of more than 2 million people's health records from more than 300 locations throughout the United Kingdom.
The scale of the study will allow consideration to be given simultaneously to all the risk factors, which was not possible in previous smaller-scale studies. The study has just started and we envisage that there will be Scottish elements in it. The Scottish Executive health department is fully engaged in MRC policy, but the chief scientist office would also be pleased to receive any quality research proposals on autism—proposals that are innovative and do not duplicate the MRC study.
Will the minister make it clear that the issue of the MMR vaccine will be included in the MRC research? Is there an allocated budget from the Scottish Executive to ensure that, if innovative ideas are produced, they will be treated seriously and money will be made available?
As I said, the CSO will be pleased to receive bids. That is how research works in the Scottish Executive.
I will now address the issue that was highlighted by Margaret Ewing, Tommy Sheridan and others—the MMR vaccine. Lloyd Quinan did not want that to dominate the debate, so I will make only three points about it.
First, in a UK context, the view of expert advisory committees—which advise UK health ministers and Scottish health ministers—is unequivocal that on the scientific evidence available, there is no causal link between MMR vaccine and autism. However, the joint committee on vaccination and immunisation continues to keep that under review. Secondly, it is important that the international context is that that view is shared by the World Health Organisation. MMR is used extensively throughout the world; in the USA, Canada, Australia, New Zealand and in other European countries. I understand from the Medicines Control Agency that no country in the world recommends that MMR be given as three separate vaccines.
Will Malcolm Chisholm give way?
I think not—I am halfway through my time and I have a great deal of material to get through. I do not want the debate, as Lloyd Quinan said, to be dominated by the MMR vaccine.
Thirdly, it is crucial that the confidence of parents is not undermined. We must remember the risks of lack of protection. Although it goes against the general spirit of the debate, I have to say that it was utterly irresponsible of Fergus Ewing to draw an analogy with BSE and CJD, on which the medical authorities of every country in the world accept a link. In contrast, the medical authorities of every country in the world say that there is not a link between the MMR vaccine and autism.
Will Malcolm Chisholm give way?
No. I have spoken for four minutes and I only have another three. The Presiding Officer might be generous and allow me a bit more time.
On the rapidly increasing incidence of autism, I accept that there is a dilemma—as Margaret Ewing emphasised—about how much is causal and how much is diagnostic.
Will the minister give way?
I cannot take interventions, because of the time.
It is one point.
Order. The minister is not giving way.
I will not get through my speech if I take interventions.
It is possible that there has been a genuine change in the incidence of autism, but we have insufficient data on which to decide. There has certainly been a widening definition and greater awareness and detection of the condition. Our priority is to ensure that youngsters who have the condition are diagnosed early and are offered tried and tested interventions.
The needs of the autistic child, adolescent and adult are many and diverse and no single care agency can hope to meet all the needs effectively. I accept Tommy Sheridan's comment that we are starting from a low base, but I believe that the learning disabilities review was a major step forward. Donald Gorrie highlighted that one of its recommendations was a call for changing attitudes among the public and professionals—that is important.
Secondly, resources of £36 million were put into learning disabilities in general by the review. Some of that will go towards autistic spectrum disorders. The main recommendation of the report, "The same as you?", is the establishment of a national service network for children and adults who have an autistic spectrum disorder. The network will aim to bring together statutory agencies, professionals and voluntary organisations that have an interest in autism. In particular, the review recognised that support services were patchy throughout Scotland. Therefore, a key early priority for the national network will be to undertake a comprehensive mapping exercise. That will enable the network to identify gaps in services and training needs and to set out how best practice can be developed in assessment, diagnosis and care support.
To draw all that together, we have reached agreement with the Public Health Institute for Scotland to carry out a needs assessment of autistic spectrum disorders. That will address the scale of the problem and the adequacy of support services. We are considering a proposal that was submitted jointly by the Scottish Society for Autism and the National Autistic Society on how to move the network forward. I assure Mary Scanlon that we will make an announcement soon.
The network will link with the partnership in practice agreements that each local authority and health board is to put in place by June this year, which will set out how local services for those who have an autistic spectrum disorder are to be developed and delivered. As in all areas of care, a multi-agency approach is required—an approach that seeks to fill the gaps, where they exist, and to provide seamless care that matches needs and expectations.
Such a joint approach is being developed—as Mary Scanlon said—in the Borders. It is being funded by an award under the Executive's mental health and well-being development fund. The initiative in the Borders is to establish an early detection programme for children who have a high risk of autism and to direct children to early assessment by a multi-agency team. The project also aims to ensure that the child and the family receive co-ordinated specialist follow-up support and care. There has been a 50 per cent increase in detection, commonly by the age of two and in time to intervene early to help parents and children alike. The project has also been instrumental in the decision to award some £117,000 to enhance the special education support that is needed by a number of children in the area. We await the next outcome report, but we are encouraged by what we have been told so far. If that work represents best practice, then our challenge will be to roll it out for the benefit of all people who are affected and their families and carers. The national network will, I am sure, wish to examine the project for any lessons in good practice.
Do I have two minutes left, Presiding Officer?
You have until 18:15, minister.
That is two minutes, so I cannot say too much about either respite care or education. The Executive has highlighted additional resources for respite care for local authorities, which will benefit the people to whom Irene McGugan referred. Members referred to education—first Elaine Smith, then Kenneth Macintosh and Brian Monteith. Clearly, schools have a role in detection, assessment and management of autistic spectrum disorders. I must refer some of the more specific points—such as those that were raised by Elaine Smith—to the Minister for Education, Europe and External Affairs. However, we have allocated £5 million a year to local authorities for in-service development and training of teachers and other professionals who work with children with special educational needs, including autism.
We have also allocated £500,000 to six projects that are aimed specifically at supporting children who have autistic spectrum disorders and their families. Thirdly, Enquire—an independent national advice service that is based, as it happens, in my constituency—was launched last year by Children in Scotland to provide information and advice to parents, children and young people.
The key to addressing the needs of people who have autistic spectrum disorders is a strategy that aims to understand more about the condition, to detect young people who might be affected at the earliest opportunity and to offer high-quality, integrated services that place the child, adult and the family at centre stage.
I pay tribute to all those who have come to the debate and to all the voluntary organisations whose commitment and dedication improve the quality of life for people with autism. We are dedicating energy and resources to making progress across a broad front to improve understanding, diagnosis and care support services. I recognise, however, that we have a very long way to go. I hope that the debate has contributed to the journey.
That concludes the debate on autistic spectrum disorder provision. I thank the minister, members, staff, and families and carers in the gallery for staying for the extra time in the debate.
Meeting closed at 18:14.