Autism Awareness Year

– in the Scottish Parliament at 5:06 pm on 6th December 2001.

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Photo of Murray Tosh Murray Tosh Conservative 5:06 pm, 6th December 2001

The final item of business today is a member's business debate on motion S1M-2428, in the name of Mr Kenneth Macintosh, on autism awareness year in 2002. The debate will be concluded without a question being put. I ask those members who wish to speak in the debate to press their request-to-speak buttons as soon as possible.

Motion debated,

That the Parliament joins with the Scottish Society for Autism, the National Autistic Society, Autism Alliance Scotland, the Learning Disabilities Trust, the British Institute for Brain Injured Children and all other autism organisations across Scotland in declaring 2002 as Autism Awareness Year; recognises the everyday challenges faced by children and adults on the autistic spectrum, and their families, in gaining appropriate support from the statutory services, and further recognises and congratulates those voluntary organisations, including the East Renfrewshire Autism Support Group, which work tirelessly to support all of those affected by autistic spectrum disorders.

Photo of Kenneth Macintosh Kenneth Macintosh Labour 5:11 pm, 6th December 2001

Next year is autism awareness year. That is the case because of the efforts of one family from a small town in Essex whose son developed autism in infancy. The story of Charin Corea will be familiar to many of us. Charin was a healthy, vital baby. At 18 months he was engaging, vocal and animated. By 24 months he had become withdrawn, he was avoiding eye contact and he had lost the ability to speak. He was in a world of his own.

Charin was diagnosed as being on the autistic spectrum and as having a communication disorder, but the troubles of Charin's family were just beginning. Their story is even more familiar than that of Charin; it is a story of frustration and disappointment, pain and exasperation, as they fought for Charin's right to basic schooling and for the support and speech therapy that would allow their boy to fulfil his potential. The Coreas had to battle with the education authorities for Charin's right to attend a mainstream primary school. They had to battle with the health authorities for the language and speech therapy that Charin needed for him to develop. They had to battle with social services for appropriate care and support.

Battles of that sort are being fought today around Scotland and the United Kingdom. Parents have to jump through hoops to get their children's needs addressed. The situation for adults is possibly even more worrying.

Charin's parents launched a campaign, which has led to 2002 being declared autism awareness year. In the Scottish Parliament, we can be proud of the fact that this is the second debate on autism in our short history, but there is still a great deal of which we need to be aware.

We need to be aware of the number of autistic children and adults in our country. It is estimated that six out of every 1,000 young people are on the autistic spectrum. That means that some 7,500 Scots under the age of 19 have an autistic disorder. Figures for adults are more difficult to establish, but the community is sizeable by any measure and its needs are not being well served by our statutory health, education and social services.

We need to be aware that existing services for those on the autistic spectrum and their families are patchy and inadequate, given the number of people who require support. Access to services can depend on where people live and whom they see.

The Scottish Executive is committed to improving services for people with autism. Its policy was set out in the publication "The same as you? A review of services for people with learning disabilities". The Scottish Society for Autism and the National Autistic Society are close to completing a mapping exercise of service provision across Scotland, which will be followed by the establishment of an autism network. We need to be aware of the services that exist and to act to improve them.

In our previous debate about autism, I spoke about the need to be aware of the importance of early diagnosis and of tests such as the checklist for autism in toddlers—CHAT. Such tests are crucial if children are to gain from the established benefits of early intervention. A recent study by Clare Brogan has found that the age at which children are diagnosed is unacceptably high—four and a half years on average. It has also been found that the time between parents' first suspicions that something may be wrong and diagnosis of autism averages approximately three years. We should be aware that, without an accurate diagnosis, it is difficult for people to access the appropriate and effective support, which is addressed to their needs, that should be the right of all children and adults with autism.

We need to be aware of the potential to be developed that exists in every individual on the autistic spectrum—through art therapy, for example. We have all seen the excellent artwork that has been displayed in various exhibitions here at the Scottish Parliament, most recently by pupils from Daldorch House School. I know of further excellent work that is being done in Glasgow and East Renfrewshire by the organisation Project Ability, which runs a children's class on Saturdays and has just begun a film-making project with two young men with Asperger's syndrome.

Perhaps the most significant challenge of all is to co-ordinate assessment and care across all services. For children and adults with autism, and for their families, there is a need for cross-agency working that supplies the range of service provision that is required to meet the range of needs across the autistic spectrum. Different services and authorities still do not talk to each other and accessing certain budgets can be a lottery for service users. However, when partnership working and joint provision of services are introduced, the results are there for all to see. In community schools for example, where health care and social work can be provided alongside the services of experienced and skilled teachers, the benefits for children are many. We need to create the funding structures that encourage more joint planning, more joint assessment and more joint working.

Autism in childhood can be a struggle, but we need to be aware that, for adults, it is fraught with other dangers. Many adults are wrongly diagnosed; many end up in the criminal justice system; and too many receive entirely inappropriate treatments. Bullying and ignorance can blight the lives of youngsters; and many adults can be abandoned to a life of neglect and isolation. We have to be aware of the potential of adults with autism; it can lie untapped. We have to make more of supported employment opportunities and of access to lifelong learning. Work-based projects for adults—such as the Prospects course run by the National Autistic Society, Intowork in Edinburgh, or the transitions course for school leavers that is run by the Glasgow College of Nautical Studies—are excellent, but they are few and far between. As part of our review of lifelong learning and our move to widen access and offer opportunities for all, particular thought has to be given to ways of increasing learning opportunities for those on the autistic spectrum.

Last but by no means least, we should be aware of the contribution that has been made to improve the lives of people with autism by the voluntary sector. Many families turn to the voluntary sector for support and information. In my constituency, it was the east Renfrewshire autism support group that first made me aware of the needs of local families. Organisations such as the Scottish Society for Autism have filled gaps in advice and support and have provided for the needs of people with autism across the country. The society's centre at Clannalba, in my colleague Karen Gillon's constituency, provides the only autism-specific respite centre in the country.

Before I go any further, I should congratulate the National Autistic Society on this, its 40th anniversary. I welcome to the public gallery people from the Scottish Society for Autism's Blantyre centre, who are visiting the Parliament for the first time. I believe that George Reid may talk about this in more detail, but I draw the minister's attention to the society's plans for a centre of excellence. The centre will lead the field in autism, not only in Scotland but throughout the UK and Europe.

To emphasise the fact that autism awareness year 2002 is not a story of doom and gloom, I will close by returning to the story of Charin Corea. Charin has needs but he also has talents. His parents are not hurt by him, but by those who would exclude him from the Christmas play or ban him from a restaurant. He makes them smile when he laughs at the television. He can draw beautiful murals—although, unfortunately for his family, they tend to be on the living room wall.

When I spoke to Charin's parents last night, they wanted to send a special message to the Scottish Parliament—a message of hope. Charin's father said:

"These children are special. They have a vital role to play in our society and in all communities. With the right help, support and positive attitude, autistic children and adults can lead relatively normal lives. This is where awareness of the condition is absolutely crucial to overcome ignorance, prejudice and discrimination. We hope that 2002 autism awareness year will lead to a better understanding of the needs of those on the autistic spectrum across the UK."

Photo of Murray Tosh Murray Tosh Conservative

Six members have requested to speak, so we should be able to fit everybody in if speeches are kept to between four and five minutes.

Photo of George Reid George Reid Scottish National Party 5:18 pm, 6th December 2001

"Was your wife born in Hong Kong?" "Is that a truncheon you've got?" "Is there an Anderson shelter in this place?" "Oh mummy, let's come again another day." Those are the words of the children from Struan House on a visit to this Parliament some months ago. They were recounted by their parents with wry amusement and a sense of pride.

Presiding Officer, if you do not know autism, and if you do not know John and Alistair and Rachel as I do, you might find the repetitive references to Hong Kong, truncheons and Anderson shelters somewhat disconcerting, as you would find some of their friends' compulsive collecting of painters' ladders—one family has two garages full—or bean bags always being put back in the bin in precisely the same order every day. Like Rachel, you might find yourself saying, "Let's come again another day." Which means, "Let's get the hell out of here, fast." That has been the problem with autism. Confronted with behaviour that they cannot understand, people—including a large number of health and education professionals—get the hell out.

On average, severe autism is still diagnosed at five or six, which is three years too late for crucial early intervention. Parents worry that their baby is not making eye contact or waving back and they are distressed that their toddler never comes for a cuddle. Jane, Rachel's mother, knew that something was wrong, but did not know what. All that she received from her general practitioner was a summary instruction to find another doctor fast.

I greatly welcome the motion, which celebrates autism awareness year 2002. Anything that puts hard information about autism's triad of impairments—in social interaction, communication and imagination—is welcome.

I have been involved with the Scottish Society for Autism for more than 25 years and I declare an interest as a member of its fundraising committee. From little acorns, great oak trees grow. The society started in Alloa in 1976, in the street where I grew up, with three pupils. Today, it employs 430 staff in eight locations throughout Scotland. Its school has places for 30 children, and 21 of those places are residential. Those children would never fit into mainstream education. The society operates 14 community houses in five locations for 100 adults. It has 12-bedded respite provision, plus a day centre in Glasgow. It offers 400 support visits a year and provides employment in glass making and horticulture in its Alloa centres.

Recently, The New York Times said that there are two centres of excellence in autism in the world: one at Tufts University in Massachusetts and the other in Alloa, Clackmannanshire, Scotland. I say to the minister that if Scotland has a centre of global excellence, we should cherish it.

After a quarter of a century, the society has announced plans for a new state-of-the-art centre of excellence in Alloa, including a school, a lifelong learning unit and a diagnostic centre. The architect is a parent. In addition to classrooms, the centre will have a gym, music room, sensory stimulation room and research facilities.

We launched the £3.7 million appeal for the new centre last month. We are perfectly confident that the bulk of the money can be secured, but we will look to the Deputy Minister for Health and Community Care for a helping hand. I do not expect the minister to say yes to that today, but I would like to extract one commitment from him.

The minister's colleague, Nicol Stephen, recently visited the society's school and said that he was wholly impressed by the excellence of the facilities he saw. What he saw and what is being achieved is giving children who arrive distressed, rocking, head-banging and unable to communicate a lifestyle that is enjoyable, rewarding and fulfilling. In a structured learning environment, they enhance their skills and life experience. They have some independence, respect, dignity and social worth. Many will move on from the school to the society's community houses.

I ask the minister please to make a visit to the Alloa school one of his first commitments towards autism awareness year 2002.

Photo of George Reid George Reid Scottish National Party

Another member has asked to speak, so I ask members to keep their speeches closer to four minutes, please.

Photo of Keith Raffan Keith Raffan Liberal Democrat 5:23 pm, 6th December 2001

Like other members in the chamber, I had my first experience of meeting a person with autism as a much younger man. A former Westminster colleague of mine had a son with autism, whom I met. I worked as a researcher for that colleague and lived with his family. I saw at first hand the severe difficulties, frustration and anger of someone who was and is a bright young man. I am glad to say that he now holds down a job and has developed amazingly. In those early days, however, I saw at first hand the frustration and anger that that child felt in having to deal with being autistic.

I will probably repeat quite a bit of what George Reid said. There is no harm in that. The minister should be aware of the strong cross-party consensus on the issue, particularly on Struan House School in Alloa. It is estimated that autism affects 28,000 people in Scotland, nearly 8,000 of whom are children.

Alloa has an extraordinary centre of excellence that has been at the forefront of autism education for more than 20 years, but it provides places for only 34 pupils. The new facility will only marginally increase that number, to 54 pupils. The present buildings and facilities are inadequate and, as the Scottish Society for Autism has said, they are a barrier to progress and to ensuring quality education. The classrooms are too small, there are no gym or exercise facilities and there is a lack of IT provision, little outdoor space and no staff room.

The plans for the new school, which is to be built nearby in Alexandra Drive, are, I understand, well developed in design terms. George Reid said that the capital cost is £3.7 million; I was told it would be £3.5 million. Perhaps inflation has hit in the past week, but if we settle for £3.6 million we will have a sum that is between the two figures. I understand that £250,000 has so far been raised. That means that there is still a long way to go. Like George Reid, I look to the Executive for strong support for the new building project. Although it is highly dangerous to do so, I will put a figure of between £1.75 and £2 million on the funding that will be looked for.

The school is expensive to run: it costs about £36,000 per place per year. It is essential that the school, which is internationally renowned as a centre of excellence, be supported. As part of their training and learning experience, nearly every newly trained teacher in the field wants to beat a path to Struan House. The school has become a vital part of their training.

My next point concerns the Scottish Society for Autism's advisory and consultancy service, which provides emotional and practical support to adults with autism and to their families. The society also provides a consultancy service to the voluntary sector and to statutory agencies. I understand that the service has helped more than 900 families, providing them with advice or developing basic skills. The service has been described as one of tremendous worth and value, but it is hindered by having insufficient staff resources to meet ever-increasing demand. It is also hindered by receiving no ongoing core funding from local authorities or the Scottish Executive and by short-term funding arrangements.

I know that the Executive is keen to see local authorities make three-year funding awards. We must see progress on that. Earlier today, we had the announcement of the local government settlement. When local authorities are under any kind of pressure and when so much of their expenditure is ring-fenced, one of the first areas that they look to if they have to make cuts is the voluntary sector. As I said earlier, it is expensive to place a pupil at Struan House School. We need longer-term local government funding to support the valuable services it provides.

I hope that the minister will address the points that I have made. Like him, I too look forward to visiting Struan House School early in the new year.

Photo of Lloyd Quinan Lloyd Quinan Scottish National Party 5:28 pm, 6th December 2001

This is my first opportunity to say how nice it is to see Mr Tosh in the chair.

I declare two interests. I am the convener of the cross-party group on autistic spectrum disorder and I am the patron of the Strathclyde Autistic Society.

I thank Kenneth Macintosh for his support on the cross-party group over the past year and a half. I also thank him for securing a most timely debate. It is excellent that the debate comes before 2002, as everybody now knows beforehand about the plans for that year.

I will spend a couple of moment thanking the many members of the Strathclyde Autistic Society, the Renfrewshire Autism Group, the Invercyde branch of the National Autism Society, the National Autism Society and the Scottish Society for Autism for the incredible work that they have put in to make the cross-party group work. I also want to thank them for the incredible work that they have put in to raise members' awareness of autism and Asperger's syndrome. In addition to the work of those societies is an army of incredibly determined parents and an army of can-do carers.

In the debate, we are focusing on the sufferers who comprise a huge mine of potential talent that we need to tap into for the benefit of our society. More important than that, we need to build the self-esteem of those who suffer from autistic spectrum disorder and Asperger's syndrome. It is vital that we recognise that making people normal is not necessarily what we seek to do; we seek to find the talent in each and every individual. That talent is to be found in savant children and in adults.

Many people have concentrated on the individual stories. I do not think that there is a member in the chamber today who has not heard me tell such stories, so I will keep off that subject and pick up on something George Reid referred to, which is our centre of excellence. That centre of excellence could become the basis for Europe's centre of excellence and a potential portal for the world. We have great expertise in diagnosis, treatment and education but, unfortunately, the number of people who have that expertise is small. The number must grow, even to deal with the increasing problem that is developing in this country.

This is a great opportunity for Scotland to contribute to the world in an area where we already have great expertise. Let us recognise it for its enterprise, esteem and talent potential. With such potential, we can develop not necessarily what we might call a business or an industry, but certainly a self-financing structure. That structure would assist not only people in this country who suffer from the disorder; it could also be exported.

The expertise we have here would enable us to train in this country people whose countries lack the resources for training. We have to develop a proper strategy that combines education, health, social services and training for all those professionals. Most important of all—I am sorry that Wendy Alexander is not here—we have to develop an enterprise strategy. There is great potential in individuals with the disorder. However, the syndrome lasts from the cradle to the grave. We must support people throughout their lives.

On a less positive note, we have discussed the triple vaccine many times in the chamber. I do not want to open up that debate but, with a new set of ministers in place and a drastically reducing uptake of the vaccine, now is the time for the Executive to provide an option—or the suggestion of an option—that may go some way to allowing an increase in the uptake of the vaccine and reducing the £1.7 million extra lifetime cost of each individual who suffers from autism—a cost that is borne by society.

I have an article here from an Ayrshire paper. The National Autistic Society intended opening a centre for adults—adult provision in Scotland is worse than other kinds of provision. It would appear that Glaisnock House in East Ayrshire, which East Ayrshire Council agreed to set up as an adult autism centre, is being sold. The article says that

"a month ago the site was sold to another bidder, who put in a lower offer, and as a result the sale will now have to be referred to the Scottish Executive."

I hope that the minister will consider that and think seriously about rejecting that lower offer and the concept that Glaisnock will not be developed as a centre of excellence for adults with autism. I would like to hear the minister's views on that.

I put on record the thanks of members of the cross-party group to Dr Andrew Wakefield, who unfortunately has left his job at the Royal Free hospital. He has been a great supporter of the cross-party group.

Photo of Murdo Fraser Murdo Fraser Conservative 5:33 pm, 6th December 2001

I commend Ken Macintosh for lodging the motion. I also commend the Scottish Society for Autism. I had the pleasure of visiting the headquarters some weeks ago and I visited Struan House School. I am delighted to lend my support to the campaign, mentioned by George Reid, to build a new school there. I was extremely impressed at the work that is being done, albeit in substandard accommodation. I welcome Christopher Marley, who is in the gallery. I had the pleasure of meeting him earlier and it is great to see him here with us.

I want to touch on a slightly different topic—although Lloyd Quinan mentioned it briefly—which is the problem of adults with autism. Many adults with autism came through their formative years without being diagnosed, or were diagnosed as they faced some sort of trauma. Diagnosis may not be made until some years later, when a professional with knowledge of autism identifies the specific problem. That is particularly true of higher autistic spectrum disorder, or Asperger's syndrome, patients.

It is rather disturbing that many staff in psychiatric units have little or no knowledge of the condition, which was first documented in the 1940s. The course material for training psychiatric staff, from doctors down to nurses, must be changed to make them more aware of the problem, so that they are able to deal with such patients. There should be continuing training for staff and encouragement for them to become experts in the field.

There are large gaps in service provision in Scotland. There is a severe shortage of trained personnel to provide care in the community. In many cases, parents want to care for their children at home with appropriate help, but hospitals and social services are reluctant to allow that to happen.

In certain severe cases, patients can be detained in hospital under the Mental Health (Scotland) Act 1984. In reality, they have no legal rights. Their parents have no legal rights, as the patient is technically an adult. The experience of some parents is that the Mental Welfare Commission is unable or unwilling to help. Because of their underlying autistic spectrum disorder, patients are often unable to understand the legal procedures. Being in hospital is a traumatic experience for ASD patients, which makes them even more unsettled and anxious.

In applying for detention orders, psychiatrists declare that the patient is unable to give consent or instruct a lawyer. The court appoints a curator on behalf of the patient to ensure that the legalities of the procedure are in order. That is a formality, and it is rare for a curator to contact the family or to investigate the background to the application. The patient has the right to appeal against the detention order, but they are often unable to understand the procedures involved. The parents cannot instruct the curator or be involved in the legal process. The question here is whether the human rights of patients are being properly considered.

To fight the treatment that is being given, the patient must take their case to court and have an independent psychiatrist give a second opinion. It is the experience of families in Scotland that there are no psychiatrists who are willing or able to become involved in such cases. The only redress for parents is to apply to the Court of Session under an act of 1585 to appoint a tutor dative. Although the patient is entitled to legal aid, the parents are not. The cost of pursuing legal action is prohibitive, so it is rarely done. Eventually, a patient can become so damaged by the drugs that they are given that they are physically and mentally disfigured and turn into drug addicts with a much shortened life expectancy.

We need a full, independent inquiry, led by a senior law officer, into the care and treatment of adult autistic spectrum patients in Scotland. As we are entering autism awareness year 2002, that would be a welcome move for parents involved in such situations.

Photo of Elaine Smith Elaine Smith Labour 5:38 pm, 6th December 2001

I congratulate Ken Macintosh on securing tonight's debate. I particularly support the motion, because I am the vice-convener of the cross-party group on autistic spectrum disorder. By the way, that group has a huge attendance at meetings. It has the biggest attendance that I have seen at a cross-party group, with representatives of many agencies and voluntary organisations as well as individuals. It is worth saying that at the outset.

As the constituency MSP for Coatbridge and Chryston, I continue to be approached by concerned parents who ask for advice and assistance with difficulties and challenges that they experience around ASD. Those approaches bring specific issues to my attention. The issues that are raised include the triple vaccine, which Lloyd Quinan mentioned, as well as problems about diagnosis, education and the criminal justice system. The main common issues are the lack of adequate support provision and the need for professionals from different agencies to work together. It sometimes seems that professionals lack knowledge and understanding of ASD and appear unable to work together effectively to support children, adults or carers.

We know that it is essential that an early and accurate diagnosis is made if children are to be given the right support and education to achieve their full potential. The current provision is not adequate in that regard. Ken Macintosh's motion says that the Parliament

"recognises the everyday challenges faced by children and adults on the autistic spectrum, and their families, in gaining appropriate support from the statutory services".

Today, I want to consider educational provision for young children. I am concerned that a number of parents have had to ask me, as their MSP, to intervene with their local authority to try to secure educational provision that they think is appropriate for their children. Last year, I spoke about the matter in the members' business debate that Lloyd Quinan secured, but I will make no apology for doing so again because I am still approached about the subject.

We refer to the disorder as autistic spectrum disorder. There are many different elements and complexities in that spectrum. It follows that each child's case is unique and each child must be treated as an individual. There may be excellent schools that suit the majority of children with ASD, but that does not mean that those schools meet the educational needs of every child with ASD.

We must take into consideration the distress of parents who know their children's capabilities and needs, but are unsuccessful in persuading their local education authorities that their children should be allowed to attend the school of their choice. Parents whose request for a particular school has been turned down have a right of appeal, but that can be a long and daunting process and can result in costly legal proceedings. Recently, after a long battle that included a court case, a family in my constituency eventually got to send their child to a school of their choice. I saw the distress and upset that the family experienced as a result of the process and I do not want anyone else to go through it.

Eighteen months ago, I asked the Scottish Executive to agree that the Standards in Scotland's Schools etc Bill should set the tone for parents—specifically those who have children with special educational needs—to have a greater say in educational provision for their children. I also said that there should an end to parents' feeling that they have no alternative other than to take legal action against their local authority so that their child can be educated at the school of their choice.

One of the recommendations in the Scottish Executive's document, "The same as you?" was that

"The Scottish Society for Autism by working with the National Autistic Society and health boards and local authorities should develop a national network for people with autistic spectrum disorder."

I am happy that those two societies are co-ordinating the establishment of that network. That should help to improve the awareness and understanding of the needs of people with ASD and will help to provide access to specialist knowledge.

The Deputy Presiding Officer is tapping, so I will finish. Ken Macintosh said that the initial service mapping exercise is nearing completion, but I understand that it is complete. I would pleased if the minister would confirm that it is complete and if he would comment on the success and monitoring of the Standards in Scotland's Schools etc Act 2000, with special regard to ASD.

I am delighted that a debate on the motion has been secured. With the members' business debate that Lloyd Quinan secured last year, it will help to raise the profile of the issues and help the public to understand them better.

Photo of Christine Grahame Christine Grahame Scottish National Party 5:42 pm, 6th December 2001

I will endeavour not to be tapped, Presiding Officer.

I remind the chamber of the Education, Culture and Sport Committee's report on children with special educational needs, with its emphasis on integration, and the Standards in Scotland's Schools etc Act 2000, which has been referred to. It establishes a presumption of integration for children with special educational needs.

I am delighted to hear of Alloa's success story, but that is not the story throughout Scotland. I have been involved with the Borders Autism Support Group. As a result of the education cuts there, which members are well aware of, the group has been vulnerable to attacks on its budgets. Children with autism have lost auxiliaries and have been affected by social work, transport and respite cuts.

A special unit that was to be developed was cut from the budget so that the money could be spent on computers. If it is a case of children with autism versus computers, I come down on the side of children with autism. Computers are not the be-all and end-all. At least 40 families in the Scottish Borders have been identified as having children with some degree of autism on the spectrum. The support group mails at least 50 people—it mails to professionals. There is some support for primary age children, although it is being undermined, but there is no support for children of secondary age. I understand that there are regions in Scotland where there is such support.

What has happened to that special unit? It was a modest step. Parents are the driving force behind the autism movement and parents campaigned for it. What was it to be? Only two classrooms—an art therapy room, which is important, as has been mentioned, and a staff-parent interview room. There was also to be a specialist play area outside and a kitchen area. They are not getting the unit, although they have worked for years to get so far. The Borders Council says that the unit has been deferred. We all know that that means the matter is out of the park.

Added to that is the failure to provide speech and language therapy, and a general failure to train professionals in the main stream in recognising the talents of children with autism in its varying degrees rather than seeing them as a problem and not "ordinary".

Like East Renfrewshire Autism Support Group, the Borders Autism Support Group not only supports but drives the agenda. Sometimes the group achieves two steps forward and two and a half steps back. I have another invitation for the deputy minister—I do not care if it is taken up after or before George Reid's invitation to Alloa. I ask the deputy minister to meet the Borders Autism Support Group, which is suffering from the cuts, to hear its concerns and to consider what he can do to assist it.

Photo of Tommy Sheridan Tommy Sheridan SSP 5:45 pm, 6th December 2001

I will try to be as brief and succinct as Christine Grahame. I hope that the deputy minister notes that few issues receive the same level of cross-party interest as autistic spectrum disorder. We must tackle the key areas of resources and training, which are sadly lacking. My close friend Alan McCoombes, who is also an acquaintance of the deputy minister, alerted me to the serious problems of diagnosis with his child, who underwent months of examinations, tests, tasks, more examinations and more tests to the extent that the family was riven with despair. They did not know what was wrong and were not able to get a diagnosis, which was sometimes through no fault of the medical profession but because of the lack of training to which Murdo Fraser referred.

Jane Hook is legendary in the west of Scotland, if not throughout Scotland, because of the Strathclyde Autistic Society and its work with respite and education services. I was a Glasgow councillor for 10 years, and if it was not for the ability to contact the Strathclyde Autistic Society in the past, I would not have been able to advise a lot of constituents. That group has more knowledge than the city council about those issues. That cannot be acceptable.

It is from that point of view that I make my brief appeal and associate myself with all the comments made in the debate. It is rare that anyone from any party can say that they want to associate themselves with all of the comments made in the chamber.

I appeal to the deputy minister. He does not have to say it tonight, obviously, because the issue needs to be considered. However, there has been a lot of work put into having 2002 designated as the year of autism. It would be an appropriate and fitting response from the Scottish Parliament if the Scottish Executive was to come forward early in the new year with a specific and new funding package. It should address the situation of the centre of excellence in Alloa, but it should also take on board Christine Grahame's point about how sparse the services are in other parts of the country. I appeal to the deputy minister to give us a commitment tonight that he will go back to the Cabinet and discuss the need for specific, ring-fenced funding for autistic spectrum disorder across the whole of Scotland.

Photo of Hugh Henry Hugh Henry Labour 5:49 pm, 6th December 2001

I congratulate Ken Macintosh on securing tonight's debate about autism awareness year in 2002. As a number of members have said, the fact that tonight's debate is the second one in the Scottish Parliament this year to address the needs of people with an autistic spectrum disorder is an indication of the level of interest in and concern for those people.

I concur with Tommy Sheridan's view that the cross-party group on autism is probably one of the most effective in the Parliament. The group is well supported and able to articulate the needs of the people whom it represents. It is a credit to all those involved.

Ken Macintosh spoke about parents having to battle and jump through hoops, and gave one particular family as an example. He also spoke movingly about the need to develop the full potential of everyone on the autism spectrum. He continued by commenting on the role of the voluntary sector, as did a number of other members.

Over the past couple of years, in my contact with people who are involved in the autism campaign, I have experienced a sense of humility that is not experienced in some campaigns that people might get involved in. The people in the autism campaign are absolutely dedicated—many of them are carers—but despite the pain and frustration that they and their families often experience, they have a joy in life. Sometimes, it would do politicians good to look, listen and learn from the dignity and determination with which some of those who are involved in the autism campaign conduct themselves.

We cannot underestimate the problems that the families face. We must all do whatever we can to help. That must include the Executive, the national health service in Scotland, local authorities, voluntary organisations, support groups and others. There is an enormous need for people to work together.

George Reid, who has a long and proud history of supporting many of the families who have been campaigning, made some general comments on autism and then talked about the impressive record of the Scottish Society for Autism. He detailed some of the society's achievements and described how it started from literally nothing.

The centre of excellence was mentioned by George Reid, as well as by Lloyd Quinan and Keith Raffan. On behalf of the Executive, I am certainly interested in looking at that development. Clearly, I cannot make any further commitment and it would be wrong if I were to raise such aspirations. However, the proposals seem to be consistent with some of the other work that has been supported. I look forward to the campaign's success and the major contribution that it might make in the years ahead. I can say to George Reid that I would be more than happy to visit the centre as soon as is practically possible.

I am glad to say that work is in progress on many levels. The landscape is changing, despite many of the difficulties. We are learning more about the causes of ASD. The Medical Research Council is finalising the report of its review of autism, which will map the current status of scientific and medical knowledge. I hope that the report will also suggest ways in which the scientific and research community can help us to move forward. There is still more to learn.

Lloyd Quinan mentioned the measles, mumps and rubella vaccine. There has been much debate about possible links between the MMR vaccine and autism. Earlier this year, we welcomed the Health and Community Care Committee's report, which concluded that, on the evidence that is currently available, there is no proven link between the MMR vaccine and autism or Crohn's disease. However, it is incumbent on us to continue to consider every possible avenue to give parents the answers to their questions about MMR. The expert group that was established recently by the Executive is considering some of those questions and examining the evidence on the apparent rise in the incidence of autism. I look forward to receiving the group's report early in 2002.

The money that has been invested and the commitment that has been made are among a number of the things that—despite the problems that arise—are happening throughout the country. I would like to highlight those good things, but time may militate against me. Instead, I will deal with some of the points that were made during the debate.

Keith Raffan mentioned Struan House, which I have already spoken about. Lloyd Quinan, who also mentioned the centre of excellence, commented on the army of determined parents. I echo his comment; I have referred to the quality of those parents' work. Although I have no knowledge of the building in east Ayrshire that Mr Quinan mentioned, I will make inquiries about it and respond to him in whatever way I can.

Murdo Fraser raised a legal and technical question. The Millan report has been published, as has the Executive's response in a parliamentary statement. If Murdo Fraser has raised any further legal questions that need to be addressed, I will have them investigated and will respond to him. In spite of some of the problems that Mr Fraser identified, it is fair to say that, given the Parliament's short life, we have made significant legal progress in many aspects of the legislation.

Elaine Smith mentioned parents who had asked MSPs to intervene on their behalf with local authorities to get an appropriate education for their child. Those parents should, and do, have the right to ensure that their children receive such an education. Responsibility for that lies with the education authority, and Elaine Smith should speak to me if she is aware of problems that are being caused by a local authority that is not implementing the rules properly. I will also respond to the two other specific issues that Elaine Smith raised, one of which was success in monitoring standards in schools.

Christine Grahame asked about Scottish Borders Council. I do not think that it is appropriate for this establishment to tell local authorities how to spend their money. Like other parties in the Parliament, the SNP believes in the principle of subsidiarity. We must ensure that the Parliament puts in place the right framework for local authorities to operate within—

Photo of Hugh Henry Hugh Henry Labour

I am sorry, but I really do not have the time to give way.

We must give local authorities adequate resources to enable them to conduct their business. Although Christine Grahame raised areas of concern that I will examine, some of those areas are the responsibility of the local authority.

I agree with Tommy Sheridan's point about respite services. George Reid and I have discussed that matter, which is something that I passionately believe in. As I have said to people in my community, such as Christine MacVicar of the Renfrewshire Autism and Asperger Group and others who do an absolutely fantastic job, the whole question of support for carers and respite care needs to be examined. However, as parliamentarians, we have to decide how money is spent. Instead of spending money on respite care and support for carers, we have decided to spend it on other priorities. In the past, I might not have wanted things to be done that way, but that is the will and the decision of Parliament. That said, it is still open to parliamentarians to make representations about priorities. I agree with Tommy Sheridan that the issue of respite care must be examined, although I point out that it has already been—and is being—seriously examined.

We have had yet another excellent members' business debate. Now more than ever before, there is more awareness of ASD, and the Executive and local authorities are beginning to respond—I admit, sometimes inadequately—to the needs of those who are affected by the disorder. I will close by paying tribute again to the parents, carers and many voluntary organisations whose commitment and dedication to improve the quality of life of those with ASD is unquestioning. I thank them for bringing a level of consciousness, reality and passion to the debate in their local communities and across Scotland in a way that has benefited everyone in this Parliament.

Meeting closed at 17:59.