Asperger’s Syndrome

– in the Northern Ireland Assembly at 11:30 am on 10th September 2002.

Alert me about debates like this

Photo of Mr John Fee Mr John Fee Social Democratic and Labour Party 11:30 am, 10th September 2002

I beg to move

That this Assembly calls on the Ministers of Education and Health, Social Services and Public Safety to instigate a comprehensive review of the services provided for people, adults and children, with Asperger’s syndrome and the training of professionals specialising in the treatment of such individuals.

I am grateful for the opportunity to raise this important, complex and difficult issue. Mr Speaker, as a layman I speak with trepidation, in the full and certain knowledge that you and other Members may know infinitely more about this topic than I do. Nonetheless, this motion is more about raising awareness and keeping the matter to the fore with the relevant Ministers. I appreciate the fact that the Minister of Health, Social Services and Public Safety is in the Chamber.

This matter is to do with fair play, equality and basic human and civil rights. There are people with Asperger’s syndrome and autism of different forms, and they may not be getting the support, care and attention that they deserve and are entitled to.

Some Members have eyesight disorders, and they expect to get a speedy diagnosis of their problem, access to medical care and the glasses they need readily and easily. There is an induction loop system and other aids to support people with hearing difficulties who work in or visit this Building.

There are people with Asperger’s syndrome whose needs are not visible and whose condition is not easy to diagnose, and when it is diagnosed it is not always clear what the best treatment is, so we must continuously update our knowledge of that syndrome, and of autistic spectrum disorder, and use best practice in treatment and education. We must ensure that the public have an understanding and awareness of the range of problems faced by those with Asperger’s syndrome and their families.

The main characteristics of the syndrome are to do with how individuals communicate, understand the world around them and relate to their environment and to the people they live and come in contact with. Many people with Asperger’s syndrome are just like the rest of us; they want to make friends and interact, but they find it very difficult to communicate. Non-verbal expressions and social rules and conventions are quite often beyond them. That creates a high level of anxiety and isolation, difficulties with communication and severe learning difficulties.

In those circumstances, their needs for care and attention, one-to-one education, and precision in the use of language and how one relates to the individual are much greater than ours. Therefore, we must find the mechanisms and supports that will allow sufferers of Asperger’s syndrome to live their lives and participate in society to the full. We must protect them against the almost inevitable danger that is depression, which looms somewhere in the back of their minds and is often one of the most debilitating symptoms of the disorder.

No professional medical practitioner would disagree that there are many differences in diagnostic procedures across the education and library board and the health board areas. There does not appear to be a single professional view of what is the most effective diagnostic method. Highly skilled professionals often must choose the type of treatments that should be given. Their decision is based more on personal experience than on any empirical research or proven methods. The situation is made more difficult by the fact that there is no defining biological marker or medical test on which to base a diagnosis. Furthermore, there is no co-ordinated or standardised approach to the making of assessments or diagnoses, or how treatment can best be delivered.

The scale of the problem must be clarified. There is no accurate information about the numbers of schoolchildren or adults who have the disorder. Figures that I have obtained from the Southern Education and Library Board show that the number of people diagnosed with Asperger’s syndrome or autism almost doubled between 1999 and 2001. In 1999, 126 sufferers were diagnosed; that figure rose to 248 in 2001. Nobody in the Southern Education and Library Board or the health board was willing to stick his neck out and say that the figures were accurate. We do not know how many people have Asperger’s syndrome, either because they have not been diagnosed or because the problem is not discovered until the early teenage years.

Before we go much further, we must recognise that finding a mechanism for early diagnosis and intervention is crucial in helping sufferers from Asperger’s syndrome to live their lives to the full and in giving support to their families. We must have properly trained specialists from across the range of professionals in the education and health spheres who can recognise the potential of Asperger’s syndrome, and the language and learning skills that are needed. Those specialists can draw in key professionals such as members of education boards, social workers and specialist teachers, and can put together the type of multidisciplinary response that will allow sufferers of Asperger’s syndrome to live their lives to the full.

Several organisations work with Asperger’s syndrome sufferers, and I am particularly grateful to Parents and Professionals & Autism (PAPA) for its support and for the information it has provided me with.

The report from the task group on autism, which was commissioned by the Department of Education, is well thought out and well researched, and much of what I am saying today reflects the contents of that report. However, structure and formality must be put on interdepartmental responses to autism and Asperger’s syndrome. Dedicated resources must be invested in the training of professionals and the delivery of supports to families. A common response should be developed by the Department of Health, Social Services and Public Safety and the Department of Education, and also by the Department for Employment and Learning, because an autism-specific employment programme should be established to try to help sufferers of Asperger’s syndrome and other forms of autism to integrate into their environment.

Many Members wish to speak, and I appreciate the fact that the Minister of Education has arrived in the Chamber. I am grateful to the two Ministers for attending, and perhaps I will get an opportunity to make a winding-up speech at the end of the debate.

Photo of Dr Joe Hendron Dr Joe Hendron Social Democratic and Labour Party

I welcome the opportunity to speak to this motion. The Committee for Health, Social Services and Public Safety is aware of the problems posed by Asperger’s syndrome. Representatives of concerned parents from PAPA and other organisations have spoken to the Committee about the difficulties faced by the parents of sufferers. They have spoken eloquently about the heartache parents face in trying to discover what is wrong with their children and of the lack of understanding of the condition among professionals and Health Service managers.

I am grateful that the Minister of Education and the Minister of Health, Social Services and Public Safety are present for the debate.

As a GP with more than a few years’ experience — I will not say how many — I know of the difficulty of identifying Asperger’s syndrome in young people and adults. The condition was only described in the 1940s, and health professionals are still unsure about the causes of the syndrome. It is an autistic syndrome disorder and it is a lifelong condition. Many people remain undiagnosed until they are adults. Only now are professionals becoming more familiar with Asperger’s syndrome and the real difficulties faced by people with the condition, especially children and young people.

It has been estimated that 36 children in 10,000 definitely have the syndrome and another 35 children in 10,000 have similar social impairments. Many of those children may have above-average intelligence, but they face difficulties with social interaction, communication, understanding, and imaginative play. People with Asperger’s syndrome may suffer from severe depression, anxiety, impulsive behaviour and mood swings. Early diagnosis is therefore important.

Mr Fee has rightly said that Asperger’s syndrome is a condition that requires a shared understanding and a shared approach from health and social care professionals and education professionals. The suitability of provisions in schools and at home for people with Asperger’s syndrome would be much improved if there were good links between health and education professionals. Health monitoring must be applied consistently to ensure that the disability is diagnosed early. Lack of early diagnosis will only increase problems such as lowered self-esteem and poor mental health.

The future lies in the hands of our children, and I ask the Minister of Health, Social Services and Public Safety and the Minister of Education to ensure that disorders such as autism and Asperger’s syndrome are properly resourced and funded. I welcome the Health Minister’s commitment, given to the Committee for Health, Social Services and Public Safety, that she will introduce a review of mental health policy and improve adolescent mental health services. The Department of Health, Social Services and Public Safety and the Social Services Inspectorate will also undertake other work that may affect children with Asperger’s syndrome.

Examples of work to improve services, such as the new Southern Area Children’s Services Plan for 2002-05, are also welcome. The plan identifies the need for a coherent and integrated approach to family support to ensure that children reach their full potential. We need a coherent and comprehensive approach throughout Northern Ireland, irrespective of administrative boundaries, to sufferers of conditions such as Asperger’s syndrome. That must happen if we are to take seriously the Programme for Government, especially its focus on improving service delivery and addressing cross-cutting policy development.

As Chairperson of the Committee for Health, Social Services and Public Safety I ask the Minister of Health and the Minister of Education to instigate a co-ordinated review of the services provided for people with Asperger’s syndrome and related disorders. I support the motion.

Photo of Paul Berry Paul Berry DUP 11:45 am, 10th September 2002

I support the motion wholeheartedly. Mr Fee clearly outlined the concerns and problems relating to Asperger’s syndrome that must be addressed. The Chairperson of the Committee for Health, Social Services and Public Safety also outlined the problems and what needs to be done. Parents and Professionals & Autism (PAPA) has lobbied very hard on this distressing matter. The motion states that a comprehensive review must be instigated as soon as possible to deal with the issue.

Parents are concerned by the perceived lack of understanding of Asperger’s syndrome among health professionals and others, which results in anxiety for parents and children. The Department of Education and the Department of Health, Social Services and Public Safety must recognise the problems surrounding the illness.

Some parents discover that their children have the syndrome only when they start school. The syndrome can cause grave concern for parents and deep depression for children who are severely affected. A comprehensive review and the training of professionals to specialise in treating such individuals are vital. We must back that wholeheartedly, and I believe that all Members will do that. However, the Department of Health, Social Services and Public Safety must also focus on early intervention and treatment. I hope that both Departments will work collectively so that the anxiety of parents and children who are affected by the illness can be eased immediately.

Photo of Gerry McHugh Gerry McHugh Sinn Féin

Go raibh maith agat, a Cheann Comhairle. I support the motion. This is an opportunity to increase public recognition of Asperger’s syndrome and to focus on what needs to be done to address it. In 1999-2000, the Education and Training Inspectorate carried out a survey of children with Asperger’s syndrome. It found that

"The area boards’ figures indicate that there are approximately 160 pupils who have been officially diagnosed as having Asperger syndrome."

The figures reveal wide variations between area boards and suggest variations in the diagnostic approach to the condition. The figures generally fall into the lower end of the nationally recognised ratios, which suggests that the condition is not widely recognised in the North.

The inspection team’s view is that the present numbers appear to be significantly underestimated. The task of agreeing diagnostic criteria and applying them uniformly across the boards is urgent. Only when that has been done can the Department of Education evaluate the resources required to provide appropriate education for the children concerned.

I am pleased to note that the Minister of Education and his Department have not been idle. The task forces on autism, both North and South, met and reported earlier this year. The report of the task force in the North noted that a wave of autistic spectrum disorder is rising through the school system and that, as it progresses, there will be large increases in the numbers of pupils, students and trainees diagnosed as having autistic spectrum disorder. There will also be a large increase in demand for appropriate services and educational provision.

The report recommended that significant improvement be made in three areas: access to multi-agency, multidisciplinary diagnostic and assessment services; training for parents of, and people who work with, children and young people with autistic spectrum disorder; and school-based and home-based educational and therapeutic provision.

The treatment centre in Armagh will be a centre of excellence and an all-island facility. It will provide expert advice and access to the latest research. In order for the centre to be successful, it must harness the energies of all concerned, including health and education services, parents and academic and medical research, to deliver the best and most effective provision. The hopes of all the families of autistic spectrum disorder and Asperger’s syndrome sufferers are invested in it.

Recent developments suggest that we are on the right road, and we must continue down it to improve the situation.

Photo of Patricia Lewsley Patricia Lewsley Social Democratic and Labour Party

I thank John Fee for bringing the issue before the House. Asperger’s syndrome is a form of autism that is often described as a display of odd behaviour. It affects sufferers’ ability to communicate and the way in which they relate to others. As a result, they frequently cannot display appropriate social behaviour. They may be clumsy or awkward and have a lack of common sense. Many sufferers are dyslexic and have problems with mathematics, while others have language disabilities or sensory difficulties. They are often obsessive about routines, and, in order to avoid anxiety and stress, they need an extremely structured and supportive system with the minimum of change.

Sufferers frequently feel isolated because they are aware that they are different from other people. Several Members said that increasing numbers of people are being diagnosed with Asperger’s syndrome. What information or education does the Department of Health, Social Services and Public Safety provide about the condition for parents, carers or the wider community? Public awareness of the condition must be raised.

Are the Minister of Health, Social Services and Public Safety and her Department communicating with the Minister of Education to ensure that teachers and healthcare professionals can be trained, so that skilled people are available to provide treatment and support for Asperger’s syndrome sufferers and their carers?

The fact that this debate has come before the House proves the need for the Minister of Education to bring forward the special education needs and disability Bill as soon as possible.

Members have identified a wide range of needs that are not being met, and the situation will deteriorate unless they are addressed immediately. I suppose that inadequate funding is the main reason for the lack of action. Although Asperger’s syndrome is pigeonholed under health, it is not only the responsibility of the Minister of Health, Social Services and Public Safety, but also of several other Departments, including Employment and Learning, and Social Development.

A serious issue that affects people with Asperger’s syndrome is disability living allowance (DLA). Although DLA is aimed at improving the quality of life of those with disabilities, some people are wrongly denied it. Parents and carers of people with Asperger’s syndrome find it increasingly difficult to access DLA because of the guidelines in force. The right to choose is vital, so people with Asperger’s syndrome and their carers should have as many choices as possible. It is important that they be facilitated to take control of their lives and to achieve a level of independence commensurate with their condition.

There is also a social aspect. Every individual is part of the community and, as such, has the right to the opportunity to develop a social network. People with Asperger’s syndrome deserve those opportunities. I support the motion.

Photo of Eileen Bell Eileen Bell Alliance

I support the motion; it is good that Mr Fee moved it. Although the Assembly has debated autism, this motion raises awareness of the difficulties experienced by people with Asperger’s syndrome, which is a growing problem. Members must send a clear message to the families who are directly affected by the dreadful and, at times, terrifying ordeal of having children or young people with Asperger’s syndrome or autism.

During the Assembly debate on autism we agreed that it was vital that all Departments co-ordinate their approach to autism and Asperger’s syndrome, which is an autistic spectrum disorder. We were delighted that the Department of Education, at the request of the Minister, set up a task group and a centre for autism sufferers. I am pleased that the Minister of Health, Social Services and Public Safety has had similar work carried out and that improvements will be made.

Autism and Asperger’s syndrome affect the families of sufferers, and it is essential that there be an urgent review, initially by the two Departments continuing the work that they have started, and then incorporating other Departments.

I have been trying to convince the Minister of Education to ring-fence funds for special needs so that children, young people and adults can be given support and practical help appropriate to their situation. I hope that special-needs legislation will be introduced soon so that these changes can be made.

People with Asperger’s syndrome are usually highly intelligent but have many problems with social interaction and trouble with at least two of the following: a marked impairment in the use of multiple non-verbal behaviour, such as eye-to-eye gaze, facial expression, body posture and gestures to regulate social interaction; a failure to develop peer relationships appropriate to developmental level; a lack of spontaneous desire to share enjoyment, interests or achievements with other people, which is characterised by a failure to show, bring or point out objects of interest to other people; and, most importantly, a lack of social and emotional interaction.

I am dealing with a child who suffers from Asperger’s syndrome, and the whole family of that child must deal with the situation hourly. Sufferers’ quality of life is impaired, so we should emphasise to the Executive that they should not be allowed to slip through the net of the system without help, treatment or support. Given the intelligence of those with the syndrome, it is often difficult to detect it during a child’s early years, and in the past children have been labelled as disruptive without any attention being paid to the causes of their behaviour. Research must be carried out to find out how best Asperger’s syndrome and autism can be detected early and specific treatment given.

Therapy aimed at teaching social and pragmatic skills can remedy many weaknesses. Anxiety leading to significant rigidity can be treated medically. Although it is harder for them, adults with Asperger’s syndrome can have relationships, families, and happy and productive lives. Therefore the Assembly must stop the practice of passing such people from education to health; from having a learning disability to having a mental illness. Staff must be trained to deal with the problems adequately. The aim must be the development of a co-ordinated action plan and the provision of proper resources so that patients and their families can have a better chance in life.

Photo of Sue Ramsey Sue Ramsey Sinn Féin 12:00 pm, 10th September 2002

Go raibh maith agat, a Cheann Comhairle. I welcome the motion, and the opportunity to speak briefly about Asperger’s syndrome and autism. I agree with Mr Fee who said that most Members probably know little about Asperger’s syndrome and autism. However, the Assembly can raise awareness: it has a duty to do so.

I am heartened by the attendance of the Minister of Health, Social Services and Public Safety and the Minister of Education: it sends out a clear message that they both take Asperger’s syndrome and autism seriously and that they are committed to providing appropriate services.

Some time ago, the Minister of Education announced to the Assembly the development and opening of a centre of excellence in Armagh. Mr McHugh said the centre would be an all-island facility that would provide expert advice, and the latest research, training, support and development for teachers and parents and for individuals who suffer from the disorder. However, it has been shown that in order for the centre to carry out that work, there needs to be commitment not only from Minister de Brún and Minister McGuinness but also from the Minister for Employment and Learning and from the Minister for Social Development. Ms Lewsley highlighted issues that are the responsibility of the Minister for Social Development and his Department such as disability living allowance. All such issues are interlinked.

Most Members mentioned the task group, which made comprehensive recommendations with regard to interprofessional co-operation, the need to involve parents and the need to improve school and home-based education and therapy. Its report provides a road map for the Assembly’s approach to children and young adults who suffer from Asperger’s syndrome and other forms of autism. I welcome the task group’s report, which supports educational provision for children and young people with autism. I hope that the report’s main recommendations will be adopted as soon as possible. There have been several developments, such as the opening of the centre, that suggest to the Assembly that we are on the road to providing key services to people who suffer from the disorder. I suggest that a copy of the Official Report of this debate be passed to those Ministers who are not present, as the issue concerns them. I believe that the Assembly is on the right road and should continue down that road.

Photo of Lord John Alderdice Lord John Alderdice Speaker

It has been drawn to my attention that we have a technical difficulty. I understand that the computers that run the annunciator service have frozen. I have seen quite a number of Members coming in during the debate, who may have had an interest in this subject and expected it to be a little later on. They may not have been assisted by the fact that the annunciators are frozen. Colleagues are working on this matter, but, obviously, it is not very helpful at this particular juncture.

The second problem is that relatively few Members indicated a wish to speak at the start of this time-limited, one-hour debate. No less than two Ministers are present. They are referred to in the motion and will, therefore, wish to speak. I appeal to all Members to be as brief as possible. I will try to allow everyone to speak, but I may not be able to, simply because of the difficulties that have arisen. I ask Members to be as understanding as possible.

Photo of Robert Coulter Robert Coulter UUP

I apologise for not being present, owing to other responsibilities. I also apologise to Mr Fee for missing the beginning of the debate.

It is fair to say that Asperger’s syndrome is not as well publicised as autism, so I congratulate Mr Fee for tabling the motion. I welcome the opportunity to debate the topic. It will, I hope, help to raise the condition’s profile with the public, statutory bodies and others who may come into contact with those who suffer from it. I have already told the House that I have a personal interest in autism, having a grandson who suffers from it, and I can identify hands-on with Asperger’s syndrome.

Experts will debate whether Asperger’s syndrome should be classified separately from autism. The task group on autism made it clear that there is a difficulty in differentiating between the two. There are two parts to that problem, namely those who suffer from the condition and the professionals who treat it. A division must be made between the two. For instance, care is taken of young people with autism up to the age of 19, but there is absolutely no provision after that. The problem with the professionals is that very little has been done to prepare for a diagnosis of the condition.

In my meeting with PAPA, the problems in obtaining statistics about the number of people who suffer from Asperger’s syndrome were explained to me. The task group report argues that the lack of training for professionals in an organised assessment and diagnostic procedure makes it difficult to obtain data on those who have Asperger’s syndrome.

The report speaks of an autism wave hitting services in Northern Ireland. Since 1999, the Southern Education and Library Board has recorded the number of children with Asperger’s. The data show that there has been a recorded increase of 158%. That could be due to several factors, including greater awareness. I was interested in a recent report on the BBC programme ‘Newsnight’, where it was stated that in California, 3,000 new cases of autism are identified each year — a tenfold increase from the 1970s.

PAPA has made it clear that resources are not in place in the Department of Education or in the Department of Health, Social Services and Public Safety to deal adequately with the problem. The problem is not simply with Asperger’s syndrome, but with all autism conditions. Through the motion, I hope that the two Departments will take the problem seriously. I welcome what has already happened. Working together gives hope to those who suffer from this terrible condition.

Photo of Iris Robinson Iris Robinson DUP

I apologise to Mr Fee for missing his contribution to the debate and congratulate him for bringing the motion to the Assembly Floor.

There are 30,000 diagnosed Asperger’s sufferers in the UK. However, diagnosis is very subjective and is based on behavioural patterns rather than on any single test. Some Asperger’s sufferers are very successful — they often excel in academia — but are regarded as eccentric, clumsy or absent-minded. They do not like transitions and prefer routine. They fail to respond to non-verbal cues or body language and struggle to make relationships with their peers. Although there is no delay in language developmental milestones, people with Asperger’s syndrome may have a different way of using language. They tend to have a good vocabulary but do not appreciate the nuances of language.

They may have decreased social skills, including the avoidance of direct eye contact. Some sufferers can become very successful, with a tendency to immerse themselves in one subject. They often seem rude, but they simply have a different perspective on life and relationships. They become obsessed with complex topics in the fields of music, history or the weather, and they thrive on details that others would regard as obscure or irrelevant.

Their speech can be monotonous, repetitive and lacking in emotion and their conversations tend to revolve around themselves rather than anyone else. Many sufferers have dyslexia or have difficulty in writing. They can appear to have no common sense. In severe cases, sufferers can become depressed or aggressive.

The condition was first described by Hans Asperger, a physician from Vienna, who in the 1940s noticed marked deficiencies in social and communication skills in several young boys with normal intelligence. The condition seemed slightly more common in males, with many children diagnosed between the ages of five and nine.

Treatments vary and no one therapy works for everyone. Ritalin has been tried by some sufferers, but its use is controversial. It is crucial that diagnosis is prompt and early and that it is followed, as quickly as possible, by intervention at home and in school. The number of children diagnosed will continue to rise rapidly, so the planning of future resources must allow for the existence of many more sufferers than we are aware of today.

Training for parents and those working with children with autism spectrum disorders will become increasingly important. Society is ill-equipped to deal with the special educational needs of those children. A task group on autism set up in the Province produced its report earlier this year, after a comprehensive information-gathering process. I am not sure whether, by tabling the motion, Mr Fee wants to start a similar process. That would not be wise; I am not sure that anything new would be revealed. Although Asperger’s syndrome undoubtedly falls within the more able end of the autism spectrum, the key components in the management of all autistic children are the same. The task group report gives detailed guidelines on how to proceed. The difficult part will be the implementation of the recommendations, many of which are merely aspirational. The nuts and bolts needed to deliver those goals are crucial. All the best theories in the world are irrelevant until those with the condition and their families can recognise significant improvement in their daily lives. I support the motion.

Photo of Dr Ian Adamson Dr Ian Adamson UUP

I also apologise for not being present at the start of the debate. I reiterate my support for the motion, which covers the full differential diagnosis of infantile autism, including Asperger’s syndrome, idiot savant, developmental dysphasia and dyslexia, and developmental right-hemisphere deficit syndrome. There is no evidence of normal development of particular functions with these conditions, which may involve partial disability. However, with other conditions there is evidence of normal pre-morbid development, for example, disintegrative psychosis, which may involve generalised disability, and childhood schizophrenia, which may involve partial disability.

Mr Speaker, I will not keep the House any longer, because you are more eloquent and well versed in this subject than I am. I support the motion.

Photo of Bairbre de Brún Bairbre de Brún Sinn Féin 12:15 pm, 10th September 2002

Go raibh maith agat, a Cheann Comhairle. Gabhaim mo bhuíochas leis an Uasal Fee as deis a thabhairt dúinn riachtanais páistí agus aosach le siondróm Asperger a phlé. Thóg Comhaltaí ceisteanna agus ábhair imní tábhachtacha le linn na díospóireachta. Tá mé tiomanta dona chinntiú go mbeidh teacht ag páistí agus ag aosaigh a bhfuil neamhoird speictream uathachais orthu, lena n-áirítear iad siúd le siondróm Asperger, ar na seirbhísí agus an tacaíocht atá de dhíth orthu. Cuimsíonn seo comhoibriú idir mo Roinnse agus an Roinn Oideachais.

Léiríonn na figiúirí is deireannaí a sholáthraigh iontaobhais sláinte agus seirbhísí sóisialta gur diagnóisíodh 400 páiste agus 114 aosach le siondróm Asperger. Tá 159 páiste eile ag fanacht le diagnóis.

I thank Mr Fee for providing the opportunity to discuss the needs of adults and children who have Asperger’s syndrome. Members raised several important concerns during the debate.

I am committed to ensuring that children and adults with autistic spectrum disorders, including those with Asperger’s syndrome, have access to the necessary support and services. That includes co-operation between my Department and the Department of Education.

Several diagnostic tests for autism can be useful in particular cases. However, the absence of a test which is reliable across the spectrum of autistic disorders has caused professionals to be cautious of introducing universal screening for autism in children. The effects of Asperger’s syndrome may become apparent only as children become older or in adulthood. Improving professional awareness of the condition results in earlier diagnosis of the syndrome, which can now be detected in a child’s early years. The latest figures from the health and social services trusts show that 400 children and 114 adults have been diagnosed with Asperger’s syndrome. A further 159 children await diagnosis.

Professional awareness helps to inform improved service provision; however, the pace of service development has been dictated by the availability of resources. Current service provision is typically met from learning disability and mental health programmes. Some £233 million was spent on those programmes in 2000-01. Although there are as yet no specific services for those with Asperger’s syndrome, health and social services boards report the development of generic services for people with autistic spectrum disorders. Examples include Down Lisburn Trust’s assessment and diagnostic team for autism, the establishment by Homefirst Trust of an autistic diagnostic team, autism diagnostic services at the Child Development Centre in Lurgan, and a specialist Asperger’s clinic run by the child and family psychiatric team.

Community-based child and adolescent mental health services have been developed in each trust in the Southern Board area, and a model of care for children with an autistic spectrum disorder has been developed in the Western Board area, through collaboration with the Western Education and Library Board, PAPA and the Foyle and Sperrin Lakeland Trusts. That is a start, but more work is necessary.

All trusts report that professional awareness is being addressed through training, and the Department is working with PAPA on the development of further training services. Professionals in community and specialist services provide support to parents. My Department funds projects run by PAPA, and I take this opportunity to pay tribute to PAPA’s work. Officials from my Department are working with their counterparts, particularly on the implications of the task group report.

In this autism awareness year it is important to pay particular tribute to PAPA’s work in raising local awareness of autism in all its forms. The organisation has worked closely with health and social services in securing development and has been particularly successful in achieving the adoption of a special education programme, the treatment and education of autistic and related communication handicapped children (TEACCH), in several trust areas. At the same time, the organisation explores with healthcare professionals how awareness training might be improved.

The motion calls for a comprehensive review of services for people with Asperger’s syndrome. That work is being taken forward in the following ways. The report produced by the task group on the education of young people and children with autistic spectrum disorders, launched earlier this year by the Minister of Education, sets a comprehensive agenda for our two Departments to develop services and support for these children.

My Executive Colleague, Martin McGuinness, will say more about that.

I welcome the centre of excellence, which is a significant development. I understand that detailed proposals for that project are being developed, and officials from my Department are involved in that work to ensure that the necessary healthcare support is provided.

After the publication of the task group’s report, the Department asked the health and social services boards to assess its implications for health and personal social services, and to quantify the additional resources likely to be needed to develop relevant services. That work is nearing completion and mirrors work undertaken by the education and library boards. There is no doubt that a multi-agency and multi-professional approach is required to meet the holistic needs of people with Asperger’s syndrome.

Significantly, the Department’s Social Services Inspectorate has commenced an inspection of services for children with disabilities. The inspection will cover children with all types of disability; it will include children who have been hospitalised for three consecutive months and those who live in the community. The inspection team’s report is due in spring 2003.

Officials are in discussion with PAPA about the best way in which training for professionals should be implemented. Those discussions will also identify the financial support and any other support that the Department might be able to provide.

Children and adults with Asperger’s syndrome should be able to access the services and support required to meet their needs. Since I became the Minister of Health, Social Services and Public Safety, the development of child and adolescent psychiatric services, learning disability services and mental health services have been high on my priorities for action. Expertise among health and social services professionals in that field is developing, and a range of specialist services are being put in place to meet the identified needs.

I shall continue to highlight the case for the necessary resources and to do all that I can, in conjunction with Executive Colleagues, to ensure that services are available as soon as possible.

Photo of Martin McGuinness Martin McGuinness Sinn Féin

I thank John Fee for highlighting the issue of services for children with Asperger’s syndrome and for providing Members with the opportunity to discuss recent developments. I was interested to hear several Members articulate what Asperger’s syndrome and autism are. The best example that I have witnessed was that of a 10-year-old boy called Kenneth Hall, who visited me at the Assembly. He has written a book in which he explains how autism affects him. I encourage all Members, and everyone who is interested in special educational needs, to read that book. It is a fascinating read; it has only around 100 pages and could be read in two hours, yet it gives a fantastic insight of a child who is affected by the syndrome.

As Minister of Education, I have repeatedly made clear my commitment to special educational needs. I remain committed to the development of high-quality services for children with special needs, their families and their schools. I have placed a strong emphasis on interdepartmental working to effect improvements in that area, not only between my Department and the Department of Health, Social Services and Public Safety, but between health and education Departments throughout Ireland and through collaboration with the voluntary sector.

John Fee, Paul Berry and Joe Hendron spoke about the need for a comprehensive review of the services that are available to people with Asperger’s syndrome. The Department is undertaking work on educational provision for children with Asperger’s syndrome in several ways. The task force on autism, which I launched earlier this year, has produced a comprehensive and hard-hitting report on the education of children and young people with autistic spectrum disorders. The report sets a challenge for those of us in the education and health sectors to work together to improve the diagnosis, assessment and educational provision for children with autism. The task force found that, in the past few years, education, health and social services provisions for children with autistic spectrum disorders have entered a period of rapid improvement.

The report made recommendations for significant improvement in three main areas: access to multi-agency and multi-disciplinary diagnostic and assessment services; training for parents of and people who work with children and young people with autism spectrum disorder (ASD); and school- and home-based educational and therapeutic provision.

My Department is planning a major conference, which will take place in a few weeks, for relevant education and health professionals who are involved in service planning and provision and for parents and representatives of voluntary organisations. That event will provide a focal point for discussion on how best to proceed with the recommendations of the tasks group’s report. Last year, my Department’s Education and Training Inspectorate published a survey of pupils with Asperger’s syndrome. Rev Robert Coulter mentioned that there is a perceived increase in levels of autism. In many ways we are satisfied that that increase can be explained by improved methods of detection. I have asked that the findings of that survey be considered in the light of the task group’s recommendations.

As well as those local developments, my Department has actively engaged in cross-border work to help improve ASD provision. It is significant that my Department and the Department of Education and Science in Dublin are actively involved in the establishment of a centre of excellence for autism which will be located in Middletown, County Armagh. All of us who are interested in this field are excited about what can be done at that centre. Detailed plans for the operation of the centre are under development, and we are trying to get it up and running by the autumn of next year.

The centre will provide diagnostic support and assessment services, training and advice for parents and teachers, an individual learning centre and ASD research and information services. Among other activities, my Department has worked with the voluntary organisation, PAPA, which has been mentioned several times in the debate and with which I met last week, to produce an information video for parents of children with autism as well as an awareness-raising digital versatile disc for teachers in mainstream schools who may be encountering autism for the first time.

Rev Robert Coulter also mentioned the interesting issue of what happens to children with special educational needs when they leave the education system after the age of 19. That affects children other than those with autism or Asperger’s syndrome, such as the many others who have special educational needs. I have been conscious of that, and the Minister of Health, Social Services and Public Safety, the Minister for Employment and Learning and I met last week with our officials to tackle the matter head on. The three Departments have established a group of officials to deal with the difficulties outstanding.

I am determined that the education and library boards be equipped to deal with the issue and to enable children in the autism spectrum, including those with Asperger’s syndrome, to access the educational provision that can best meet their educational needs. Special educational needs remain at the top of my agenda, and I will use my best endeavours to secure the resources that are necessary to develop those important issues.

Photo of Lord John Alderdice Lord John Alderdice Speaker

I should like to indicate my appreciation, not only of Members’ and Ministers’ general conciseness, but in particular of the proposer who volunteered to reduce his own comments to a few brief remarks so that all other Members who wished to speak could do so.

Photo of Mr John Fee Mr John Fee Social Democratic and Labour Party

Thank you, Mr Speaker. I appreciate the fact that the two Ministers were here and gave such comprehensive commentary on what is going on. I should explain to Mrs I Robinson that the motion was originally tabled last October, but Members across the Chamber have accepted the spirit of the motion.

The thrust of the work of the two lead Departments, as well as the other Departments, must centre on three goals: early assessment, early diagnosis and early intervention. Everything must be subordinate to those goals. From what I have heard this morning, I am convinced that the two Ministers are heading in the right direction, and I appreciate that.

Question put and agreed to.


That this Assembly calls on the Ministers of Education and Health, Social Services and Public Safety to instigate a comprehensive review of the services for people, adults and children with Asperger’s syndrome and of the training of professionals specialising in the treatment of such individuals.

The sitting was suspended at 12.30 pm.

On resuming (Mr Deputy Speaker [Mr J Wilson] in the Chair) —