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JOINT COMMITTEE ON HEALTH AND CHILDREN díospóireacht -
Tuesday, 15 Jul 2008

Autism Services: Discussion.

The joint committee is pleased to welcome representatives of the Irish Society for Autism; Aspire, the Asperger's Syndrome Association of Ireland, and Irish Autism Action. I welcome Mr. Pat Matthews, executive director, Irish Society for Autism, and Mr. Denis Sexton, a member of the society's board. I also welcome Mr. Shane O'Halloran, development co-ordinator of Aspire, the Asperger's Syndrome Association of Ireland; Mr. Desmond McKernan, honorary secretary of the association; and Ms Joan Ryan, the association's family support officer. I welcome Ms Geraldine Graydon and Ms Jacinta Walsh of Irish Autism Action.

Before we begin, I draw attention to the fact that while members of the committee have absolute privilege, the same privilege does not apply to witnesses appearing before the committee. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable.

I ask Mr. Matthews of the Irish Society for Autism to make the first presentation. Members may ask questions after the briefings.

Mr. Pat Matthews

I thank the joint committee for giving the Irish Society for Autism an opportunity to outline the needs and entitlements of people with autism spectrum disorders in Ireland. We are facing a crisis because the prevalence of autism is increasing at an alarming rate. In the late 1980s just one in 2,000 children was diagnosed with an autism spectrum disorder. However, more recent studies suggest one in 100 children has such a disorder. In 2007 the Lancet reported that the prevalence of autism spectrum disorders was one in 86 children. A study by the Cambridge University autism research centre indicated that one in 58 children had some form of autism spectrum disorder. If we accept the validity of that study and apply it to the schoolgoing population in Ireland, we can extrapolate that there are over 10,000 children of schoolgoing age with an autism spectrum disorder. Approximately 800 such children enter the education system each year.

It has been well established that early diagnosis and intervention offer the best possible outcome for children with autism and their families. This window of opportunity must not be ignored. Unfortunately, in some instances diagnosis can be delayed for up to three years. This can lead to significant problems for children and unbelievable stress for families and, ultimately, society. It is a clear breach of the human rights of children with autism and the wider community will suffer as a consequence.

In designating 2 April this year as World Autism Awareness Day the General Assembly of the United Nations stated it was "deeply concerned by the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges to long-term health care, education, training and intervention programmes undertaken by Governments, non-governmental organisations and the private sector, as well as its tremendous impact on children, their families, communities and societies". It further stated it "invites all member states, relevant organisations of the United Nations system and other international organisations, as well as civil society, including non-governmental organisations and the private sector, to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism". Regardless of their political leaning, all Members of Dáil Éireann and Seanad Éireann must grasp the nettle and ensure people with autism are given an opportunity to live their lives with dignity and respect.

In December 1984 the report of a study group on the development of psychiatric services recommended that children in whom autism was suspected should be referred to specialised centres where assessments could take place. It recommended that health boards should assess the services available for autistic children and draw up a plan for the development of a comprehensive service. Thirty four years have passed and we are still waiting for adequate and appropriate diagnostic and assessment centres to be provided as a matter of urgency. We knew of the issues facing people with autism in 1984 and had an opportunity to ensure this would be the first country in the world to develop a world-class service. We have wasted 34 years of people's lives and disregarded the plight of families, not out of ignorance but because we lacked courage, vision and goodwill - we simply did not care. We have an opportunity to correct the mistakes of the past and build a world-class service with a strategic plan commencing this year. Early diagnosis, early intervention and appropriate education will enable people with autism to lead a fulfilled life with dignity and respect.

Progress has been made since the publication of the task force report on education in October 2001. Educational provisions in primary schools are improving and children with autism are making progress. However, there is still an unacceptable shortage of trained professionals to support teaching staff. Speech and language therapists, occupational therapists and educational psychologists are not available. There is no cohesive strategy to assist children with autism who are in the system but cannot cope. There are major difficulties in moving from primary to secondary education and on to third level or to access vocational training. We need a cradle to the grave strategy and cohesion between education, health and social welfare services. We also need autism-specific training for all staff working with people with autism. An autism awareness programme is required, in addition to autism research. Family support services and respite services are also required. Life-long provision, as and when needed, must be provided for. We must also provide for an appropriate evaluation of models of best practice.

The Irish Society for Autism has joined autism organisations in Wales, Northern Ireland, Scotland and the USA to form the Celtic Nations Autism Partnership and the North Atlantic Alliance. The principal aims include the sharing of training, information and skills from one country to another; joint campaigning on relevant national, European and worldwide issues; joint research opportunities; the sharing of issues and mutual support and shared governance on all decisions, activities and policies agreed within the Celtic Nations Autism Partnership. In May the Welsh Assembly launched a national autism strategy for Wales. The Scottish Assembly is working on an autism strategy for Scotland. The Northern Ireland Assembly is working on autism-specific legislation modelled on the Blueprint for Change, which I have circulated. New autism initiatives are being introduced on a worldwide basis. The Celtic Nations Autism Partnership and Autism Europe are campaigning to have the European Charter of Rights for People with Autism supported with appropriate legislation. The declaration in the charter of rights states:

People with autism should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism. These rights should be enhanced, protected and enforced by appropriate legislation in each state.

Since the 2006 Combating Autism Act in the USA was signed into law, more than $1 billion has been allocated in a five-year programme to combat autism through research, screening, early diagnosis and early intervention. The US legislation includes provisions designed to improve and co-ordinate the US Government's response to autism.

Without legislation the specific needs of the growing population of people with autism will not be met. Once autism spectrum disorder was included in 1993 in the Swedish Code of Statutes, it resulted in a significant impact on services, health and the economy in Sweden. It also resulted in autism appropriate services being delivered in a planned and cohesive way. To deliver services in such a way we require to know the size of the problem in order that we can plan effectively. We have a physical and sensory database, as well as an intellectual disability database. Children with autism may be included but not identified as having autism, which is useless as far as planning is concerned.

The Irish Society for Autism is 45 years in existence, campaigning on behalf of people with autism. It has 25 years experience of direct provision of autism-specific services. It is co-author of the European Charter of Rights for People with Autism, a founder member of Autism Europe and the World Autism Organisation. Thousands of people, parents, families and professionals, have received information on autism during the years. The society continues to contribute to autism research in Ireland in collaboration with Professor Michael Fitzgerald. It believes in the rights, entitlements and the dignity of people with autism and calls upon the committee to urgently address the issues facing people with autism spectrum disorders. I look forward to politicians in Ireland, Wales, Northern Ireland and Scotland working together to share knowledge and experiences to expedite the provision and delivery of services of excellence to people with autism spectrum disorders.

There is a worldwide epidemic, with the prevalence of autism increasing from one in 2,000 children in the 1990s to one in 500 in the late 1990s and to one in 100 in 2008. It is still increasing and the Cambridge study indicates it may now affect one in 58 children. Legislation and progress are needed in increasing awareness of autism issues, funding for autism activities and early diagnosis and assessment. Action must be taken to ensure autism appropriate education individualised to suit the needs of each child, not dictated by dogmatic principles; autism specific training for professionals; respite and family support services; life-long learning; protection and advocacy services and research into the cause, prevention, intervention and models of best practice. A clear strategy is needed to co-ordinate services and make it incumbent on all sections of government to work together in a cohesive way. We must stop the scandal of families desperately searching for a diagnosis, an explanation, help and support services which are not available. The skills and information are all around us. There is no excuse for further procrastination.

The Irish Society for Autism will co-operate and willingly work in partnership with Oireachtas committees, the HSE and other interested agencies to ensure appropriate services for people with autism can be delivered in a planned and timely way.

Mr. Shane O’Halloran

I thank the joint committee on behalf of Aspire, the Asperger's Syndrome Association of Ireland, for the opportunity to meet its members today.

Aspire was established by a group of parents in 1995 to provide support for people with Asperger's syndrome and their carers and to encourage research into the condition. Asperger's syndrome is a form of high functioning autism and those affected by the condition find it extremely difficult to relate to people and interact socially. During the years Aspire has developed support, educational and training services for those affected and their families. The association organises conferences, seminars and courses with the aim of raising awareness of the condition. It also encourages and undertakes ongoing research. It assists in the development of support groups. There are approximately 20 support groups which meet on a regular basis.

The association has ten salaried staff and seven volunteers, with the HSE providing 70% of the funding. The remainder is raised through fund-raising and membership fees. Aspire encourages people to become members of the association in order that they can avail of our services. Typically, we have at least 300 members in a given year and run a busy helpline to help those affected. We also run a residential unit and assist in the management of two supported employment services north and south of Dublin. When the residential unit was established, we submitted a business plan which showed that the cost of setting it up was largely offset by savings in providing psychiatric hospital care.

In 2004 Aspire developed a research partnership with Dr. Carmel O'Sullivan and her research team at the school of education, Trinity College Dublin, to investigate the use of drama as a new approach in the teaching of social skills to children and adolescents with Asperger's syndrome. Drama is seen as a convention to create a safe environment for the individual with Asperger's syndrome in which to try out and test his or her social skills. The project has been very successful and demand from parents has increased during the years. This is an example of a project funded privately by Aspire.

Another much needed service which Aspire has only recently been able to reinstate due to a successful fundraising campaign is that of family support. The family support officer provides counselling, advice and support for families affected by Asperger's syndrome. The report of the task force on autism reads, "The Task Force considers that all people with Asperger's syndrome and their families should have access to a range of family support services. These services should include ... sibling support services and information regarding entitlements, dietary interventions and current research findings on educational approaches".

Aspire has been successful in developing and promoting alliances with other disability organisations. They include Spectrum Alliance, an umbrella network of disability groups established to promote the rights and entitlements of those affected by a range of hidden disabilities such as Asperger's syndrome, dyspraxia, dyslexia and ADHD in Ireland. We are a member of the Disability Federation of Ireland and more recently have come to participate in the Autism Partners in Innovation project. Autism Partners in Innovation is a consortium of six member groups, including Irish Autism Action, ABAILE , Gheel Autism Services, Eve Limited and the Cork Association for Autism. The aim of the project is to provide access to information and improve the quality of training through accreditation.

As I mentioned, Asperger's syndrome is a form of high functioning autism. People with this syndrome can experience great difficulties with communication, social interaction and flexible thinking. They can often develop obsessive, repetitive routines, are prone to clumsiness and can suffer from bullying in schools and even the workplace. In many cases, these difficulties can manifest in later life in the form of high levels of anxiety, stress and depression. This can greatly affect the chances of an individual living independently and participating in higher education and employment. Most of those affected by the condition are marginalised on the fringes of society. Support must be maintained and improved to assist them in integrating with mainstream life. There is no cure for Asperger's syndrome, although a variety of treatments and interventions can assist in addressing the core difficulties experienced by a person with the syndrome. However, there is a dearth of services for people and families affected by the condition and even where services are available, they are restricted by a severe lack of resources, causing long delays for those seeking training or assistance.

According to the report of the task force on autism, in Ireland the diagnosis of autism spectrum disorders remain problematic, with significant delays being the norm in many instances. Although some children are now diagnosed before or by the age of five, many high functioning children with Asperger's syndrome are not diagnosed until adolescence or later. The task force stated this delay is unsatisfactory and unacceptable.

The first issue that needs to be addressed for the benefit of the Asperger's syndrome community is the need for a prevalence study. We still do not have any official statistics for the number affected by Asperger's syndrome in Ireland. As the only official organisation representing the Asperger's syndrome community, Aspire recommends that a national prevalence study be conducted to find the true incidence of the condition. The need for such a study was highlighted seven years ago in the task force report which stated "The Task Force recommends that as a matter of urgency research be conducted into the national prevalence of autistic disorder". Our research suggests more than 10,000 are affected by Asperger's syndrome in Ireland. The condition also affects the members of the extended family, in particular parents and siblings. It is very important for both the HSE and Aspire to know the true incidence of the condition in Ireland in order to engage in appropriate service planning.

The domiciliary care allowance is a monthly means-tested payment made in Ireland to the carer of a child with a severe disability who lives at home. Eligibility for the allowance is determined primarily by the degree of additional care and attention needed by the child rather than the disability involved, subject to the means test. Through calls to the Aspire helpline and the family support services, the association has noticed the increased incidence of parents being refused payment of the allowance and other entitlements. Since Asperger's syndrome is a debilitating condition, this reaction is confusing to parents who are faced with the increased pressures and strains of taking care of their newly diagnosed child. I would, therefore, remind the committee that, due to its very nature, Asperger's syndrome is known as a "hidden disability", in that the disability is not readily apparent, as would be the case with a physical disability. This often masks the true nature of the child's disability which, left untreated, will almost certainly manifest itself later in life.

In an effort to learn more about the current situation and needs of the Asperger's syndrome community in Ireland, Aspire conducted research into 110 families who had at least one person with the condition. Although findings must be further analysed, preliminary results show that only 30% of those questioned were in receipt of necessary services to help their child adapt into mainstream society. Many of these services are not provided publicly by the State and even those which are available are restricted by a severe lack of resources, leading to long delays in obtaining treatment or support. Long waiting lists for services have also begun to appear in the private health sector due to the lack of public services available. It is also worth noting that in a recent study conducted by Aspire initial findings indicate that people would rather receive proper State services than benefits or allowances.

There is a need for better provision of research funding in this field. In our efforts to learn more about this condition and its socio-economic implications, we have found it extremely difficult and time consuming to source public funding and instead have been forced to spend a huge amount of time on fundraising. For example, our current research which examines the needs of carers and adults affected by Asperger's syndrome has been conducted using our own funds which had to be redirected from other areas. The importance of research cannot be underestimated. For example, in a small-scale study of 25 members conducted by Aspire, we found that a large number of parents were forced to leave employment to take care of their child. When all the financial factors were taken into account, we found that the cost of setting and maintaining the service was offset by savings to the State in terms of benefit payments and loss of revenue to the State.

The goals of the Aspire development plan relate to the creation and provision of new services to be offered by Aspire, the further development and improvement of existing services and the continuing task of raising awareness of Asperger's syndrome. Although we submitted a detailed version of this plan, including financial costings, to the HSE in 2006 for its assistance in achieving these developments, we have not received any support to date.

I will now outline a brief list of the recommendations made in the plan. Aspire has secured a family support officer, but only through its own fundraising efforts and donations and a surprise legacy very kindly left to us. We need support from the HSE to support our officers. We also need a diagnosis and assessment centre. Due to the current lack of countrywide services and the fact most parents must go private to secure a diagnosis, Aspire is proposing the development of a one-stop diagnostic and assessment centre by 2008.

With regard to awareness, Aspire is in the process of producing a DVD on Asperger's syndrome. Once complete, it is our intention to send a copy to every school in Ireland and make copies available to families affected. We are very grateful to Trinity College Dublin and the special education support services for their support in connection with this project.

With regard to the provision of an education officer, we need Government funding to realise this but until this comes into effect, Aspire will have no choice but to fund an education officer through its own resources.

On training, the Tuiscint training centre in Dublin provides pre-employment training for people affected by Asperger's syndrome or high functioning autism. This is the only centre of its kind in the country. More training centres urgently need to be established in Dublin and the service needs to be made available in a number of regional locations.

I refer to the expansion of residential services. There is a serious and dire need for the expansion of the residential service run by Aspire. This is an extremely important service, as it offers the possibility of a full, enjoyable and meaningful life for individuals with Asperger's syndrome. A second residential house to provide living skill support for adults and a respite house to give relief to families and caregivers must be established as a matter of urgency.

I refer to drama group developments. The outstanding success of the drama classes has led to a huge demand by parents nationwide for classes in their region. There is a great need to expand the project on a regional basis to avoid exclusion for those who are unable to attend the classes in Dublin. The aim of the project is to develop participants' confidence and social skills in order that they can participate fully in society and live independent or semi-independent lives.

I thank Mr. O'Halloran. The joint committee will now hear a presentation by Irish Autism Action. Will it be delivered by Ms Walsh or Ms Graydon?

Ms Geraldine Graydon

We will divide it between us.

Ms Jacinta Walsh

I thank the joint committee for giving me the opportunity to speak. We represent Irish Autism Action, an umbrella body for more than 40 parent groups, support groups and schools throughout the 32 counties. We advocate and take public positions on all matters pertaining to children with autism in so far as we can. Initially, we intend to discuss the issue of diagnosis. We echo and agree with the submissions made by the two groups which preceded us. Some of our points will overlap because of glaring omissions from the service thus far.

Our first point pertains to Part 2 of the Disability Act 2005 which came into force last summer. It stated children up to the age of five years had a right to a time-defined assessment, which sounds great. A child must be seen within three months of an application being made to have an assessment completed and one must receive all reports within six months. Were this happening, it would be a fantastic service. As everyone knows, although this has been the law for more than a year, it is not happening in many counties. The services do not have the teams in place and children still do not receive diagnoses. This is a great burden on families in getting services for their children and in terms of the emotion toll. Until one receives such a diagnosis, one hopes against hope it is not true. As there is an assessment, rather than a blood test, in this regard, one hopes against hope it is not true until one is informed otherwise, even though it may be quite obvious. Moreover, until the diagnosis has been made, it is extremely hard to gain access to whatever services are available. Consequently, it is only a matter of time before someone takes a law suit in this regard as many cases are extant.

Irish Autism Action established a diagnostic centre in April 2007 which has seen more than 300 children since. They have undergone a full multidisciplinary assessment with occupational therapy, speech therapy, educational psychology and clinical psychology. Occasionally, we receive referrals from the HSE. We usually receive them at five weeks or at five months and three weeks. This usually occurs in cases in which the parents have shouted loudly enough and received sufficient support from their local politicians or in cases of extreme crisis in which we are called in to make a diagnosis. It should not have to happen like this. It should be a straightforward matter to get other agencies involved. If the HSE does not have the physical manpower to make such assessments, it should subcontract them out to other reputable agencies which have the appropriate staff. This can be done.

The next point we wish to raise pertains to the lack of continuity between counties and between the Departments of Education and Science and Health and Children, special educational needs officers, SENOs, and the National Council for Special Education. There is a never-ending spiral of people who do not talk to one another. There is little clarity in respect of services for people with autism. Once one receives the holy grail of a diagnosis, one can then ask what services are available. A person who lives in County Louth may gain access to a certain service, as a multidisciplinary team operates in that county. For example, one may receive six occupational therapy appointments each year. However, if one lives one mile away in County Meath, there is no autism team. Some services are subcontracted out to Enable Ireland, while responsibility for others rests with the community team. However, as the latter do not have people to fill posts, one will not receive the service. This constitutes a post code lottery, whereby the availability of services depends on where one lives. This is highly distressing for parents who may meet someone from another county who is in receipt of a service they are not. It seems there is no list or plan when one is going through that situation. We have addressed this and gone as far as we can within Irish Autism Action. We have a helpline to which we get many calls and a website.

As mentioned by Mr. O'Halloran earlier, we are working in partnership with some other autism groups to develop a detailed website. Our current website details on a county-by-county basis all the services within that county, such as education, health and parents' support groups. Our information officer told me this morning that she gets quite a few calls from employees of the HSE asking about HSE services, usually in a different county or part of Dublin. That they are ringing a support group helpline to find out is telling.

Another issue that is relevant for many parents of children with autism is home support. There are very few autism-specific respite placements. The only respite parents get is home support, which is paid for by the HSE. This varies from county to county. Some people get paid directly and can hire a babysitter or somebody to come in and mind their other children when they do something with the child with autism. In some counties, they hire the people directly. Again, it depends where one lives.

A number of people, particularly in Kildare, around the south Dublin area and in Wexford, have received letters telling them that their home support of eight hours per week is being cut to five or six hours because of the cuts. It is an easy thing to cut because these people are not permanent employees and do not have contracts. They are paid approximately €12.62, which is just above the minimum wage, so it is relatively cheap for the health service. I know this issue comes up in terms of care of the elderly and everything else. It is the single most helpful thing the health service can do for a family in the absence of appropriate services. That families can go to home support really helps them.

There are many families where parents have not been out together with the rest of their family for years. One must factor in the 24-hour care and attention that must be given and the logistical nightmare of trying to work out where one's child with autism and one's other children are and who is going to be where. If one has the facility of a home support person who can come in and share the burden, it makes a significant difference. That is a current issue and if the committee could address that in any of its areas, it would really help.

Clinical supports are relevant, be they in the form of an ABA school or ASD unit or whether a child is in a mainstream setting with support. There are very few clinical supports into schools. If it is done at all, it is mainly done on a clinic basis. This means that the occupational therapist is in a clinic or wherever their office is and children come for appointments. One might get a block of six weeks and about a year or two later, one might get another block. It is completely disjointed and is not encompassed within the overall education programme.

We would advocate that the clinical staff are assigned to schools, as they were for a certain amount of time. They commit to be there every Monday and work with the teachers, special needs assistants and ABA tutors to implement the speech and occupational therapy programmes across the day every day. This would be much more effective and useful for the child. If the occupational therapist is not available, the schools should be funded to hire somebody. Many schools would like to have a co-ordinated approach with the clinical support staff on site.

The last point I will make relates to the lack of appropriate child and adult respite. As evidenced by the statistics mentioned by Mr. Matthews earlier, there is an increasing number of people with autism. Obviously, most families want to do as much day-to-day care as they possibly can. If they know they can get respite for even one weekend in four, the person with autism will be able to live at home for much longer without facing a crisis and putting people under severe levels of stress. Most carers are under a very high level of stress. If they know they can get a break, which should be a lovely, pleasant and positive experience for the person with autism and a nice, guilt-free break for the parents, that would be a really good step forward. Ms Graydon will continue.

Ms Geraldine Graydon

I thank the committee for allowing us to make this presentation. Many perceive autism to be a plight on all of our houses. However, the real plight is the lack of knowledge and understanding among many in government, State services and society of this unique disability. This situation has led many parents to express feelings of bewilderment, mistrust and frustration.

I am attending this meeting to share with the committee an insight into the needs of young people with autism and to demonstrate that the recognition of this disability is a fundamental component in improving the quality of life of people with autism and their families. Individuals do not grow out of autism, nor does it go away on its own. Autistic children grow up to be adults with autism. They will be adults for longer than they will be children. The much improved behaviour and skills seen in the current generation of our students will inevitably erode without continuous maintenance. Young people and older adults with autism need ways to maintain their skills and to continue to learn new skills. The money spent on their therapy will have been in vain if additional money is not invested to maintain their skills. While young people on the autism spectrum must transfer and begin to meet the challenges of young adulthood, they need ways to maintain their skills and continue to learn so that they can become contributors to society instead of being a burden.

As my submission is extensive, I will only cover bits of it. I hope the committee will take the time to read it, as autism is a wide area and I have tried to highlight the matters that affect families. My submission gives a blow-by-blow account of what has occurred in our school in the past ten years.

Approximately 24 years ago, a departmental report on the psychiatric service found that the prevalence of childhood autism was at the same level in Ireland as it was in other countries. The report recognised that, while autism seriously affects the learning capacity of a child with autism, it is distinct from the global definition of a mental handicap. While the report recognised that some children with autism are mentally handicapped, most mentally handicapped children do not have autism. Given that this opinion is well-supported by international research, we must ask why, 24 years later, only one Department officially recognises autism.

The report also identified the need for individual behavioural programmes and stated that a high staff-child ratio would be required. It indicated that a considerable number of people with autism would continue to require intensive treatment and care during adolescence and beyond. Furthermore, resources for treating centres must include provision for social skills, vocational training, sheltered workshops and recreational facilities. However, the report also contained the opinion that the environment surrounding people with autism should be similar to that appertaining to many mental handicap centres as long as the appropriate staffing and facility resources are provided. This latter comment has led to the current situation, namely, the belief that programmes and facilities for people with intellectual disability are well suited to people with autism. From international research, we know this is not the case and can lead to challenging behaviour and ill health.

Many speakers have referred to the Department's 2001 task force on autism, which found the key element in people with autism achieving equal status to be education. The report highlighted the task force's disquiet with the level of investment and the lack of planning to meet the needs of people with autism. To access education, a person with autism requires access to other Department of Health and Children professionals. The committee has heard how this access does not exist. Naturally, a cost will be associated with meeting these needs, but it must be faced by society and the administrators in a range of Departments if we are to make our education system more egalitarian.

The eastern regional health authority's 2002 report acknowledged that, historically, children or adults with autism and intellectual disability had received their services from the intellectual disability providers. However, a lack of resources or awareness means that those presenting with dual disability were provided with generic services that did not take cognisance of their special and unique needs. Did the Government or relevant Departments do anything to rectify this situation? No.

People have highlighted the national intellectual disability database, which was set up as a planning tool to identify people and provide services. There is no field in that database for autism and I, as a parent of a child with autism, refuse to put him on that database. He is not included in statistics as requiring a service.

Many young people with autism find that opportunities at second level, third level, vocational training and further and continuing education are severely limited across the spectrum. The task force highlighted that.

Another matter highlighted by the task force was the re-categorisation by the health boards of people with autism as having a learning disability. It was not referred to as autism, which led to the proper services not being provided. For many on the autism spectrum in Ireland, the progression from second level schooling to adult life will be the most difficult transition. Planning for the transition is ad hoc and must be incorporated into each educational programme during the early teenage years. This transition planning must accompany ongoing outreach counselling and support, especially for those with a higher functioning autism, to which Aspire has referred. They need access to an independent advocate through the transition period and particularly in the formulation of care plans, as recommended in the report in 2002.

The advocate programme has recently been cut by the Department of Social and Family Affairs. If the Government does not provide effective autistic-specific adult services and support, we will be failing a generation by wasting considerable resources, years of time and effort by the individuals, the families and the dedicated teaching staff who have prepared them for a life of independence and productivity. Our Government cannot terminate the supports these young people still need to continue to improve their communication, behaviour, management of their social challenges and social and community integration. If these young people do not get continuous funding for their further education training and day services, we can expect to witness a marked deterioration in their skills. The gaps have been highlighted and my research shows that autism and Asperger's syndrome do not fit into the eligible criteria operated by many agencies. People are excluded and denied access to, or participation in, appropriate treatment or provision.

Consequently, many are falling through the gaps in our system that create unhelpful boundaries and definitions and a marked lack of responsibility from the State, which has a duty of care to people with autism. Until the capacity is built in the Department of Health and Children and the HSE to meet needs, and while services continue to be driven by budget means, and eligibility criteria are considerably tightened to control expenditure, many people will be deprived of access to the specific help and support they need.

When the State fails in its duty to provide a service, the burden of the financial and personal responsibility is shouldered by parents. When children are transferring from one system to another, such as the primary system where children are in an ASD unit or special school and are then mainstreamed, the HSE is saying that it will support the children in a six month transition and then services will be guillotined. Those children will have four or five years in the mainstream system with no help or support. This comes under the new system of PCCC funding outlined in the report, which I hope members will take the time to look at.

People with autism should have the same rights enjoyed by all Irish citizens. Those should be enhanced and enforced by appropriate legislation in Ireland, to include the right to live independently and the right to representation and involvement in the decisions involving their future. They also have the right to accessible and appropriate education, housing assistance and support services and sufficient income, as well as the right to freedom from fear, threat or abusive treatment.

The new funding structure is not very user friendly. We believe the way forward is to move to self-directed supports and to individualised funding, a term which is not popular among service providers or the HSE. There is nothing more powerful than an idea whose time has come. The presentation outlines in detail the advantages of individualised funding and the barriers thereto. The advantages are numerous and research from other countries has shown that it is not the black hole that many within the HSE would maintain. Individualised funding provides choice and control over what people with disabilities and their families want. It also has the potential to address the cultural diversities of families far better than the block funding system currently in use. Families are more likely to become informed as to the available services and programmes and knowledgeable, independent planners can assist families to properly plan and then negotiate with the Government to reduce the isolation and fear of families. Individualised funding also ensures that meeting the needs of the disabled person is the primary objective.

The barriers to individualised funding arise because it represents a shift in power away from the State funded agencies and service providers towards the people who require supports. For many social workers, agency workers and others who support people with disabilities and their families, this represents a welcome change to a more responsive system with the potential to truly empower people with disabilities and their families. However, it must be carefully managed, a fact which we readily acknowledge. We recognise that individualised funding represents a threat to the status quo of certain agencies, unions and Government employees. This is evident in the amount of misinformation circulating about individualised funding and the resistance to it from some Government and other agencies.

Countries like the United States of America, Canada and the United Kingdom, have come to recognise the difficult situation in which young people with autism find themselves and are taking steps to rectify the problem by recognising autism as a separate disability and by working with autism organisations to identify the needs of adolescents and adults with autism. We in Ireland must follow suit. We must acknowledge the adults who will need to be served and supported in the coming years. It is apparent that despite many initiatives and high-profile awareness activities by parents, the desperate plight of the person with autism remains unsolved. There is an enormous demand for consolidation efforts to be applied to provide appropriate services for this large population of individuals.

The population estimate for individuals with autism in Ireland is 34,000 and we are ignoring them. The impact on the economy and on public health is inestimable but of sufficient magnitude to warrant Government direction and leadership. Ownership by Government of the autism initiative is the unavoidable way forward. The identity of autism as separate from other disabilities in legislation would be a major step forward. There is also an opportunity to follow the example of Sweden, the United States of America and the United Kingdom, where a significant impact on both health and the economy has been made by including autism in their statutes, resulting in the practical initiation and implementation of appropriate supports. Like all parents --

I ask the witness to conclude as quickly as possible.

Ms Geraldine Graydon

Our children's futures are in the committee's and the Government's hands. Their decisions will determine whether they progress or regress. If the elected Government of this country cannot provide for its most vulnerable citizens during the good times and the not so good times, then Irish society holds no future for any of us.

I thank the witnesses for their presentations.

I welcome the representatives of the various groups, some of whom I know very well. I have five children, one of whom is autistic but who is, luckily, doing extremely well. I can identify with many of the issues raised today, including the lack of facilities and diagnostic uniformity, the refusal of certain authorities to even acknowledge that there is such a condition as autism which requires a specific and very different educational approach and the outrageous tradition of assessing non-verbal autistic children with a verbal IQ tool.

I want to take this opportunity, however, to speak about him, our son - it is a "him" three times more often than it is a "her". Despite being told being told that he was mentally handicapped, that he could not speak until he was five or converse until he was ten, he is now in third level education. Let nobody set a limit on the horizon of a child's development.

The lack of uniformity across the system is clearly driving people to extraordinary lengths in the quest to find services for their children. Services are available in some counties but not in others and assessments are lacking generally. I do not know how many years ago Beechpark was established to provide a service to the former Eastern Health Board area but it is now difficult to access. Similar facilities are lacking in other parts of the country and people have to seek private assessments at a cost of €800, notwithstanding that a proper diagnosis and education plan is cheaper in the long term because children can thereby reach their full potential, live more independent lives and, often, return to mainstream schools. In the past, it was said that 50% of children with autism also had intellectual disabilities but I would estimate that should a similar survey be conducted now, the figure would be much lower.

Given that I am not as involved in this area as I was in previous years, I would like the delegates to explain why the number has increased so significantly. I am aware that part of the reason is increased awareness and, therefore, a greater willingness to diagnose but what other factors arise?

The Departments of Education and Science and Health and Children should be asked why they do not join forces to provide a full range of services that reflect the abilities of the autistic individuals with whom they deal. Some require more support than others and services range from special schools and applied behaviour analysis to support in mainstream schools. Special needs assistants are a welcome addition to schools but they are not trained in the area of autism. Rather then expressing my own opinion, I am reflecting the opinion of many people who faced this situation when I say they are getting little more than babysitting services. That is soul destroying for parents because the window of opportunity for their children lasts between the ages of three and six and they would like to think they will be cared for by experts who can achieve more than is possible in the home setting.

What can we do about the lack of accurate figures? This committee needs to push for a full and proper database of children with autism so as to understand the extent of the problem. It is only through accurate figures that services can be planned or demanded. At present, we are in a fog and it is difficult to shout loudly. We know that 12 applied behaviour analysis schools are being supported by the Department of Education and Science but many more are required. Other approaches are also needed and I do not think people would have the same angst about applied behaviour analysis if that approach was available in normal educational streams and special school programmes, which could move to a less dependent setting as people develop. As a fellow parent, I assure the delegates that I will support them in any way I can.

I thank the delegates for attending. We meet a lot of groups to discuss a wide range of disability issues. In terms of the spectrum of autism, it is important that people are made aware that each child is an individual and what works for one may not work for another. That is very important. Sometimes we put particular labels on children and assume that the same level of attention or the one-size-fits-all approach will do for them because of that particular label, but that is not the case. I recently visited the school in Blackrock in Cork that deals with autism. It is an incredible sight to see children across the range getting the individual attention they need and to witness the results that can be achieved. We must try to continue to have such an outcome at that level and place proper supports into the future so that people, in most cases, can be fully functioning and be an asset to society. That is something we must keep in mind.

I also recently attended a conference hosted by Inclusion Ireland for personal advocates. It was enlightening. Last week we met a group from Enable Ireland who talked about Leader-led funding and care packages. People are not on their own when such support is available. The approach discussed by both organisations may be a revolutionary one for people with a disability. Those of us who have been in this business for long enough thought all the revolutionary ideas were over and done with, but clearly they are not. Enable Ireland and Inclusion Ireland talk about this and the people, those who have the disability, talk about it in respect of advocacy. This is the road we must take. This approach will not be for everyone and we must accept that. There will definitely be people who will need a group or centralised system to plug into because the other way will not suit. For those who want it, this approach is about managing their own lives and putting in place a system best tailored to them. Everyone is an individual.

Mr. Matthews made a point about data with which I agree. It is a vital issue, especially for a committee such as this. If people do not know what they are dealing with they cannot possibly put in place the necessary responses. I know there is a database of a kind but it is clearly not sufficient. I have a question for the three groups. If they were to prioritise - obviously it is difficult across such a wide area - what would be their two top priorities? What would they ask this committee to push for them, with whatever determination we can muster?

I welcome the groups and thank them for their presentations. We recognise the contribution that has been made by such groups in this area since the first commission report in 1965. Parents also make a huge contribution and in many instances contribute to the education of their children. I agree with the speakers and with my colleagues that the gaps identified must be filled, but it is also important to recognise the tremendous strides that have been made, particularly in the past ten years. Significant numbers have been added in special needs education. There has been an astronomical increase in the numbers of special needs assistants, for instance, from 250 to almost 10,000. The number of teachers is up to 9,000. There has been a tremendous improvement but that does not take from the fact that there are gaps which the speakers have identified today.

I am very interested in the area of early intervention. From my experience, it appears that diagnosis comes rather late and therefore the child is much older than one would wish. The diagnosis comes rather late and by then the child is older than one would wish. Very often the diagnosis is derived from the parent taking the child to a private consultant and not through the public services.

There is a need to integrate services more closely. Efforts have been made with the health and education systems to ensure children are diagnosed at the earliest possible stage. This allows an opportunity for parents along with professionals to identify the best way forward for the child. We all wish to ensure that every child gets the opportunity to which he or she is entitled and to deal with autism or children with different needs so that there is no stereotyped plan for children. I wish to hear the view of the delegation on the matter of early intervention and how it may be progressed.

Many important issues have been raised by the delegation, including databases. We are encouraged by the Good Friday Agreement in this regard. One of the beneficial outcomes was the purchase by the Department of Education and Science and the Northern Ireland Department of Education of St. Joseph's School in Middletown and the establishment of a centre for autism.

The Middletown Centre for Autism has not progressed as rapidly as we would wish for a variety of reasons. Nevertheless, it is progressing and since the Assembly and the Executive began functioning in Northern Ireland, much progress has been made in appointing the key people to manage it. I understand to begin with there are four facilities planned. These include a residential learning support service, educational access and training, an advisory service and the autism research and information service. I also understand the first two services are to commence. Good work has been done and I hope that will address the way forward for some of the issues raised.

I thank the delegation and I would be pleased to raise the points mentioned with the Minister. I hope we will see progress.

I welcome everyone and especially some of the guests from south Tipperary in the audience - they know who they are. I will not take up too much time as many of the points have already been well made by other speakers. That Deputy James Reilly can relate personally to a situation gives added insight to the issue. From listening to other viewpoints, to the separate groups and from my experience there is considerable variation throughout the country in the availability of services.

While working as a midwife I became aware of a significant issue involving a paediatrician with a particular interest in autism. When a parent brings a child for an examination it is very difficult to get a psychologist to make a diagnosis. This is a significant difficulty as we do not have a standard by which we can measure the services required for the future. If there is not a proper diagnosis early on, it seems every aspect of care and attention including home tuition, home hours, home help, or whatever system works is hard fought. It is gruelling when dealing with a child with these needs. There is a wonderful unit in Ardfinnan national school in Clonmel, County Tipperary. It does not use the ABA model but an eclectic model which works very well. It is pleasing to see that such a school seems to have managed the correct approach. Also, Lus na Gréine is a pre-school dealing with special needs. It is wonderful when one can see how something can be so positive for children.

There is always an element of frustration when one hears about the aspects of models that are incorporated, not just from a county or area, but when there are wide variations between different counties. There are also other models to consider, such as the American, Canadian, Welsh, English and Scottish. We are trying to do so much. Deputy Lynch said that if the best approach was prioritised, how could it be progressed? We need to have a database and joint approach by the Department of Health and Children and the Department of Education and Science. It has to be meaningful and this committee could be helpful in that regard.

I welcome the members of the delegation and thank them for their presentations. I agree with Senator Prendergast when she referred to some of the investments that have happened. We all want our children to be the best they can possibly be, whatever that is. Whatever is necessary to allow them to do that has to be put in place. The reason for the increase in the numbers of children diagnosed with autism has been raised. Having come through the education system, I believe for many years there were children who were autistic and were considered to be slow, disruptive or needing remedial education, as it was inappropriately termed. Those children did not get the support or service they needed or deserved. There has been better research and diagnostics, but there are still differences in counties. Even when there is a service in a county, the standard of services between counties are very different. This is a huge cause for concern. I respectfully suggest that is one of the reasons a huge increase is seen in the number of children being diagnosed with autism.

I support the need for early intervention. Anything that can be done to assist this must be looked at seriously. Changes have been seen in the education system over the last number of years but support from the Health Service Executive or the Department of Health and Children to allow those changes to take effect has not happened. It is time that the HSE, the Department of Health and Children, and the Department of Education and Science worked together as partners in learning and in dealing with this. They seem to be working in a vacuum, there is no joined up thinking and they are not talking to each other. If nothing more was done by the committee than to get the two Departments to look at this seriously and talk to each other it would be the greatest success we could have.

Special needs assistants were mentioned. They are not there to teach but to provide support to the student and the student body. I feel aggrieved about the fact that when a child reaches sixth class in primary school the special needs assistant is not automatically transferred with that child to second level education. That can have a regressive effect on the child's progress. The child has come to know somebody who is there as a support, has become used to them and their ways, and knows what they need but suddenly the comfort zone is taken away. Not alone is the child moving into a new school with all the challenges that brings with it, but the one piece of support provided is not automatically guaranteed. That is a huge issue and needs to be looked at.

The whole area of respite is extremely important. I have visited people who have children with autism; there are challenges and home life is difficult from time to time. Parents, families, and the other children in the house need that support. It is very important because if parents are dealing with this and trying to do their best, it is not too much to ask that they get a little support to enable them to have a breather in order that when they come back they look at it differently, and it is good for the child also.

The last point I wish to make is in regard to something Mr. Matthews said. I agree wholeheartedly that we can learn valuable lessons from discussions with other people, particularly heath care and educational professionals and politicians, and we can share knowledge and experience. We could develop a model of best international practice. That would enable us to ensure that the services delivered to people suffering from autism are services of excellence. There is huge potential for cross-Border co-operation. We hope to visit Stormont in the autumn. As a committee perhaps we need to put an issue such as this on the agenda for discussion at Stormont.

Mr. Matthews talked about Middletown. Let us look at how we can have more cross-Border co-operation and how we can learn from each other. When one shares experiences and ideas it helps everyone. Nobody has a monopoly on ideas. What I think might work may not necessarily work but let us discuss it and see what we can learn from each other.

I thank the delegates for their presentations and all the information they have given us. I am very familiar with some of the organisations working in this area and I appreciate it has been an uphill struggle to get resources or for, say, Aspire, to get an understanding of the Irish Society for Autism or Irish Autism Action.

A range of problems have been identified and the delegates have much support on this side of the House. We will do everything we can to assist. Many helpful suggestions have been made. The main problem I see at present is the inconsistency of services. Where is the national plan and at what stage is its implementation? We need multidisciplinary teams throughout the country. I have been approached by many people as the child and family centres are closed in various parts of the country and they do not have waiting lists, not to mind autism teams. That is the reality.

I would like to hear the delegates' view on implementation and an evaluation of what is being done. As a committee, what we need is hard data on the number of teams throughout the country and how many counties that do not have teams. We are aware of the waiting lists that parents are facing. While I acknowledge the progress that has been spoken about, I am saddened that many parents still have to reinvent the wheel. That is the problem with young children. If comprehensive services are not available they set out on the journey of trying to get a diagnosis and then to access the services. Huge effort is involved. I see that as a major problem.

Where is the national plan? What is the delegates' understanding of it? How is its implementation proceeding? We have had many reports suggesting what the national plan should be? In the delegates' view, which is responsible, the Department of Health and Children or the Department of Education and Science? I am struck by the international initiatives mentioned by Mr. Matthews and how in, say, Sweden when certain legislation was in place, X, Y and Z followed in terms of services and likewise in the US. We have a Disability Act that theoretically provides access to assessment but, according to the delegates, it is not working. We have the legislation but its implementation seems to be completely flawed. As a committee, that is where we should intervene and that is where I would like to see us doing the work with some input from the organisations.

I thank all members of the committee for their questions. Before the delegates reply I would appreciate if they would tease out further the issue of the database. We have a number of databases of which, as Ms Graydon said, the intellectual disability database is one and in some cases there is an overlap while in others there is not. I ask Mr. Matthews to clarify what we need in that area, be it a specific autism database or whatever. I understand that is what he is saying but he might clarify that.

Overall, the statistics are startling. Deputy Reilly asked if we knew the reason the incidence is expanding in terms of numbers. It is one area where we must ensure that the appropriate supports, services, information and so on are in place because the condition is widespread in our community. We will begin with Mr. Matthews and then hear from other speakers.

Mr. Pat Matthews

There are many questions and very few real answers. We believe the increase in autism is caused by many factors. One is the improvement in diagnostic services and the other is that the autism spectrum has increased to take in not just the Kanner type child but also people with Asperger's syndrome.

People believe now that there are predispositions to autism within families and we do not know whether it is genetic or otherwise. Environmental factors may trigger autism. People are now examining the environmental factors as major causation. If the predisposition can be identified, which people are trying to do, and environmental factors avoided, and if the child can be protected until the age of approximately 36 months, autism will not develop. That is an area for research and one that warrants examination.

The children who develop autism are unique and they respond to different stimuli. Autism appears to affect the neurotransmitters, that is, everything that codes and decodes messages. What an autistic child sees, touches, smells or hears might be different from what the next child sees. They see things differently and we have evidence of that from people who have recovered from autism who have told us what it is like to be autistic. One of the most famous of those, Donna Williams, even now as an adult, has to feel the walls when she walks into a room. It is like painting by numbers. When she touches it, it exists. It does not exist by sight alone. When she wrote her books she did not know what she had written until she had finished and read it because the side of the brain she was using to write was not in contact with the other side of the brain. Those are the complexities with autism and the reason each child is unique and needs different teaching methodologies.

Sound is another problem for children with autism. Some cannot hear high pitched sounds while others hear too many of them. We must create an environment in which each child can learn. That is the fundamental part of understanding autism. The teacher must understand the child. That gets back to the point about diagnostic services and early diagnosis, but it is not only diagnosis that is important, it is the assessment of the individual child and what that child needs to stand any chance of developing his or her true potential. That is the reason we need centres of excellence and the diagnostic services we spoke about 34 years ago. We would be world leaders by now had we followed our own instincts at that time instead of trying to air-brush autism out of the system.

We have had data collection by the former Eastern Regional Health Authority, the Western Health Board, the South Eastern Health Board, the Southern Health Board and the North Eastern Health Board. All the people involved compiled reports that are now gathering dust somewhere because people did not want to read them or act on their findings. If we took them off the shelves tomorrow, dusted them down and examined them we would have a good picture of autism levels five years ago. We do not have to do a new expensive study. In the former South Eastern Health Board area approximately 50 young adults were identified who required services. If they were asked now the number of children they had on the waiting list they would probably say "two". What happened to the other 49? Were they air-brushed out of the system? Reports exist and they need to be examined.

I am a fan of the Middletown project. When Deputy Woods was Minister for Education and Science, we discussed that project at great length prior to it coming to fruition. I have visited that centre on a number of occasions. Unfortunately, the Middletown project is in the North and it is inaccessible to most people. Therefore, we need such a project closer to home. The people concerned in the west and the South do not have such centres. Therefore, such centres are needed. The Middletown project is a good example and it was based on the Beechpark project. We spoke about having a Beechpark type project in north Dublin, south Dublin and west Dublin in the earlier stages, but that idea was then air-brushed out and forgotten about. Such inconsistency among people annoys me.

We have talked about a wish list. If I had a wish list, it would include the introduction of a national strategy, based on an examination of all these reports, deciding what we want to do and then doing it. That would include the provision of diagnostic services, which is essential for every parent concerned. When a child is suspected of having autism, the child should be referred somewhere within days, not within weeks, months or years. That child should have some support system to help meet his or her needs. We do not have such a system in place. The education system in Ireland is relatively good up to second level education, although we could do with having many more schools and many more trained professionals in the system. Schools are being set up and classrooms are opening but, unfortunately, it is not a level playing pitch. While many schools do excellent work, others do not because they do not have the knowledge and awareness and, therefore, they struggle. There is no centralised support system in place.

We need a seamless transition. We do not want parents to have a child placed in a special school or in mainstream education and at the age of 12 have to go searching again when their child has to change schools. Children are then placed in schools for another four years and then the penny drops, namely, that they do not come under the remit of the Department of Education and Science but under that of the Department of Health and Children, which does not do anything for them in this respect. Therefore, these children go through this trauma all through their lives. They have no security because the services are not integrated. Our services are not able to cater for people with disabilities but they should be about to do so. The people concerned have to cope with too many struggles.

I am a parent with 42 years' experience and parents have been through the mill. Most parents first get a diagnosis that their child is deaf, their child's main problem is that he or she does not hear, but we now know that children with autism are not deaf. I can guarantee that 75% of parents were told that their child had hearing problems. We do not have the necessary awareness or professionalism. We need to get our act together and ensure proper diagnostic services are put in place almost immediately.

With regard to models of services used in other countries, the transnational approach is good. We can learn from other people and it is a short-cut to providing services, but other people can also learn from us. We are not that far behind in our models of service. The models we have are good. Our adult services are being emulated in other countries. The Hungarians have adopted our model and the operational policy of our service and translated it into Hungarian. The Czech Republic is doing the same. Two farms are opening in Poland based on Irish models of service. Therefore, we have models but we need to replicate them here. We need the HSE to provide services for all the children who require them and not to bury its head in the sand. I find that a major problem. I am frustrated, knowing that we can educate children with autism, that we have some very good schools and centres of excellence for autism, but in terms of provision we do not emulate them.

Senator Fitzgerald spoke about the implementation of services and about what is being done in the Welsh, Scottish and Northern Ireland Assembles. They are doing something that has not been done here. They have invited the voluntary sector to participate as partners in the development of their services. The Scottish Society for Autism works very closely with the Scottish Assembly. The Welsh Assembly has invited the chief executive of the National Autistic Society, Wales, to spend a year as implementation officer on one of its committees. PAPA enjoys free access to the Northern Ireland Assembly and to the Northern Ireland Executive's Ministers for Health, Social Services and Public Safety and Education.

Those in the voluntary sectors in Scotland, Wales and Northern Ireland are welcomed with open arms, while their counterparts in the Republic of Ireland are struggling to be heard. That is why this meeting represents a wonderful opportunity for us.

A number of US Senators who represent the Autism Caucus are due to visit Ireland in the autumn. The Welsh Minister for Children, Education, Lifelong Learning and Skills intends to invite her partners from the Celtic nations to visit Wales to discuss autism. These people are taking initiatives because they want to learn about this matter. Where are our initiatives? Where is our autism caucus?

There are members of the legislative assemblies of Northern Ireland, Wales and Scotland - they come from all parties - who act as autism ambassadors. What will the Dáil and Seanad do to make the network of autism organisations more welcome? When will initiatives to bring an end to the difficulties that have been experienced during the past 30 to 40 years be introduced? Ireland is not a poor nation and it will not cost a great deal more than is currently the case to get matters right.

I do not know if I have answered all the questions. However, I will leave it at that.

Mr. Denis Sexton

I wish to add a couple of points to those made by Pat and various other speakers. I am delighted we have been given the opportunity to address the committee because the focus is now on health.

Much of the debate in recent years related to education methodologies, which are extremely important. However, Mr. Matthews used the term "cradle to grave". Those who deal with autism, must focus on cradle-to-grave issues. I have been a parent for 23 years. Deputy Conlon stated that it is time the HSE and the Departments of Health and Children and Education and Science began to work together. I identified a deficiency in this regard in the past. During the debate that took place in recent months in respect of education, all the focus was on the Department of Education and Science while the Department of Health and Children hid behind the parapet, and was very happy to do so.

I am a teacher and I have no intention of downgrading my profession, but education is only part of life. While it certainly helps to improve the quality of life of those with autism, services relating to many other areas are also required. I refer, for example, to speech therapy and occupational therapy services. All therapists are employed in the health sphere and the Department of Education and Science is not responsible for them.

There are no short-term solutions in respect of certain matters. Doctors and diagnosticians recommend that people see speech therapists, occupational therapists or physiotherapists. There are not enough therapists and there is a need to ensure that more people train in these disciplines.

Reference was made to children gaining access to services once or twice a week for an hour at a time. Access to such services is required on a daily basis. As a previous speaker indicated, these services should be provided in classrooms and not in clinics. There is a need for improved planning. A famous footballer once stated, "If you fail to plan, you plan to fail". All the difficulties relating to autism services came about as a result of people failing to plan. How far back should we go in respect of planning? All the professionals to whom I refer must be trained because their services are required.

More so than in other areas, the Departments of Health and Children and Education and Science must work together in respect of autism services. The two sections of Government must work hand in hand and they must be totally inside each other's heads. A plethora of good Bills has been enacted in the past six years, including a few Educations Acts, which are excellent, with some flaws, Equality Acts and a Disability Act. However, the most critical element of the legislation was the sectoral plans, which were intended to address the question of co-ordination and getting sections of Government working together and they must happen. I could go on for hours about this.

Respite care is necessary to give parents who give lifelong commitment to children and adults with autism a rest and support. Previous speakers mentioned how families are left struggling on their own in this regard. Parents must live to be able to do the job. Siblings must be allowed some quality of life in order that they are not living permanently in disrupted homes. This is the reality when one gets away from parliamentary theory. Living in a house with an autistic child is a disruptive experience. Siblings try to prepare for the leaving certificate examinations and so on with commotion going on. Respite care and other supports are supposed to be provided by the Department of Health and Children but they are not. People find it impossible to secure respite facilities now and they are desperate.

While education improves autistic people, they have full life expectancy. In the services founded by Mr. Matthews, people are approaching their 50s. I attended a conference he organised where we looked at geriatric planning for autistic people. That will shock members given that children with autism have not been sorted out yet. I know Deputy Reilly's son and they have done a fantastic job with him. Mr. Matthews referred to the original Kanner element and they are still there. They are the profoundly, deeply autistic people. In the old days, the statistic was between five and 17 per 10,000 people and one could take it five out of the 17 were Kanners. My son is one of those and they will not be cured. Education will make their lives better but they will never live an independent life. They will be totally dependent. I do not wish to use pejorative terms regarding care homes but no matter what education system is used, a percentage will never live independent lives. That leaves the old problem of the two old parents asking each other what will happen when they are gone. They are not being catered for. Two thousand people will need lifelong support and residential care and that is not being planned for. I will say no more because I will only depress members further.

Mr. Desmond McKernan

Deputy Reilly referred to the increase in autism. Much of that is due to awareness and the diagnosis of autism has improved. There is a long way to go. Our brief when we began was to raise awareness and we have succeeded to some extent because Asperger's syndrome or high functioning autism is hidden and it is not that apparent. Kanner autism and the triad of impairments, which all children with autism have, in communication, socialisation and flexibility in thought and imagination are present in children and adults with Asperger's syndrome but it is not readily apparent. They were regarded as eccentric, odd, difficult or similar to the nutty professor in the past. We have tried to raise awareness that it is autism nonetheless. It is there and it does not go away.

On the matter of the wish list, I reiterate the call for the Department of Health and Children and the Department of Education and Science to work together. It is interesting that in Northern Ireland the relevant Minister is the Minister for Health and Education because those Departments were amalgamated at some stage. Perhaps something like that might be examined. There should be better communication between the two Departments. It is a tragedy they do not work together because in the case of autism this is essential if things are to improve.

It is very easy to be negative but one of the positive things we have done in recent years is use special drama to improve the social skills of children with Asperger's syndrome. We have worked with Trinity College on this for the past four years and have seen big improvements in the development of the children and in overcoming many of their problems, for instance, in eye contact or in co-operating with other children. In general, we see a huge improvement in their sociability because of the drama work. If we had a wish list it would be for these classes to be available throughout the country. That is not the case at the moment and Dublin is the only place for such classes. There are 45 to 50 children taking the drama classes and we would love to see them extended throughout the country.

This goes back to the point about early intervention. Such classes are the intervention we would recommend for children with Asperger's syndrome or high functioning autism. The big difference is that the children tend to be verbal and can be brilliant in particular areas but they fall down or fall out of school due to problems, such as bullying or lack of understanding on the part of the teacher, or through lack of a special needs assistant, SNA, who understands the condition and who can assist the child. The tragedy for Ireland is that we could actually be world leaders in the treatment of autism but we have failed.

Ms Geraldine Graydon

I will deal with a couple of issues. Concerning diagnosis, I agree that we need better diagnostic tools. Knowledge of autism is much better but there is an environmental component and a lot of research is taking place at present in the United States on this aspect. On the issue of data collection, the census is a simple tool of data collection. Why do we not put a question in our census? People trust our census and would have no problem stating whether they have a family member with autism. This could be done in the next census and would not require a huge amount of money.

Much work has been done in the United States on the early detection of autism and diagnosticians there have what they call "red flags". One of these is the circumference of the child's head. If this is above the norm at the age of 12 months, at developmental test time, that child is monitored to see if he or she develops language. If that does not happen, language intervention is begun very early and the child is monitored. If other red flags show up, intervention is already under way and the child has been classified. The research from the United States is significant and is proving very fruitful. Such red flags as have been identified exist and our pediatricians might use them to screen for autism. We must screen for it, as we did for congenital hip problems. My daughter benefited because somebody knew what to look for and she was lucky.

If these red flags are taken into account, children must be assessed using proper assessment tools by somebody who is knowledgeable about them and about verbal and non-verbal tests. The WISK test is used widely in this country. It is not a bad assessment tool. It shows how a child tackles problem solving and how it learns, but the IQ assessment part of the test is entirely verbal. Any time it is used on a child with autism, whether verbal or non-verbal, the rating always puts the child into the intellectual disability bracket. That test should not be used as a guide for intellectual disability. I wish it was stopped now.

I have been involved in the Beech Park services since 1994. On paper it looks marvellous but in reality it literally does not exist for those aged 12 and over. I do not care how much they say it does, I will say that it does not.

My son has had no speech therapy for five years. He has had no assessment since he was eight years of age. He has had therapists come and go at a rate the committee would not believe. In the end, three years ago, I decided there should be no more of this. I had stayed with the school because it is consistent and the teachers and the SNAs, the special needs assistants, are fantastic. They know exactly what to do. They have developed my son's language skills and his other skills far beyond what the health board could do.

Beech Park looks good on paper but not so in reality. It needs to be evaluated and I suggest an independent evaluation of the Beech Park services. It started out as good in theory but it ended up as being non-existent for many of us.

I would have concerns about the Midleton centre. Again, in theory, it looks good but its position is wrong. It is proposing a model that does not exist anywhere. I am concerned about that whole set-up. The money that is being expended on it could be better and more wisely spent. It looked good when it started but in my view it is no longer good.

The HSE is used as a conduit for funding. It funds so many organisations that the administration is enormous and this needs to be examined. I am an advocate of individualised funding and suggest the setting up pilot schemes. I refer to what In Control did in the United Kingdom. It is well documented and well structured and is a model we could use here.

On the question of SNAs transferring from primary to post-primary schools, what 12-year old wants an SNA velcroed to his or her back? They need support but it can be done in a different way and this needs to be considered. Their support should not be severed at 12 years because they need it up to 18 years, and there is a different way of providing that support. If parents are not provided with respite care many will be forced to give up their jobs and become a burden on the economy. Parents do not want to be burdens on the economy.

The biggest problem is the mindset in this country. I have attended many conferences in the United States, Canada and the UK. The one thing that strikes me about the difference between them and us is they will openly admit their mistakes whereas we do not do this. I was always brought up to learn from my mistakes but we do not even want to admit to them. The HSE has got it wrong, big time.

The solution would be to set up a strategy on autism and to establish an independent body or person, independent of the Departments of Health and Children and Education and Science. This office would have the power to knock their heads together and to ensure implementation of the strategy. We have the knowledge. I acknowledge that there are people within the HSE who know and understand this condition but they suffer from tunnel vision because they must come in under budget and account for every penny. They must work with service providers and they do not have a remit to work with parents. We do not tick their boxes. We need to work together. I see the solution as having three pillars, the service providers, the State and the parents who are a pillar which needs to be strengthened.

I advocate for an autism strategy with ring-fenced funding. An office dealing with autism could be under the aegis of the Department of the Taoiseach. It has been done before. We are very good at working out solutions in some areas but we suffer from tunnel vision in others, and it is a case of one size to fit all. One size does not fit all, as many people here have said.

I hope this committee can do something to get this up and going.

I thank the delegation members. This has been a very productive and practical session. I acknowledge the wealth of experience around the table on all sides. This committee certainly could do something very useful in this area. I suggest we put it on the agenda to see what the committee could do to bring forward proposals.

The committee should commit to consulting the delegations again in a few months. Having listened to the various speakers today, it is clear that the failure of the two Departments to co-operate is unforgivable. The committee has a responsibility to help the organisations. We should make a commitment to do everything in our power to help them into the future.

I would like to make a proposal. I agree with Mr. Sexton's point that while education is a large part of life, teaching is a small part of education. This year's class of physiotherapists is facing unemployment. We have trained them, but we are not employing them. The same can be said of speech and language therapists. That is the problem. I am aware of schools in Swords and Blanchardstown which have classroom special needs assistants but cannot get the HSE to provide behavioural therapy or any other form of therapy.

I propose a vote of thanks to all three deputations which have attended this meeting. They are doing a fantastic job. The manner in which society deals with autism spectrum disorders has progressed significantly as a consequence of the work done by the organisations' volunteers. I am sure the rest of the committee will join me in congratulating those involved.

When the committee goes into private session, I propose that members should not leave until they have agreed on a recommendation to be made to the Minister in this regard.

I second that proposal.

It depends on whether members can stay for such a discussion. That is the only problem.

It will take three minutes. We need to have something to show for this meeting.

Do members agree to stay for an extra five minutes at the end of the meeting?

I have to go to another meeting at 5 p.m.

We can continue the discussion at the beginning of next Tuesday's meeting. If we cannot reach agreement today, we will finish the debate then. We will discuss the matter for a few minutes in private session today.

I support that proposal.

Ms Jacinta Walsh

I echo everything that has been said. Irish Autism Action has commissioned Professor Anthony Staines of DCU, who is a professor of public health statistics, to conduct a research study. We have raised funds to pay for that research, which has already started. The study is focusing on incidence. We want to ascertain how many people with autism and Asperger's syndrome there are in Ireland. It is hard for the authorities to take action until those numbers are known.

The suggestion that a database of this nature be drawn up during the census is practical. We can make a recommendation to that effect. I thank the various delegations. Before we go into private session, I remind members that at its next meeting the committee will meet representatives of the post polio support group and the sudden cardiac death support group.

The joint committee went into private session at 5.10 p.m. and adjourned at 5.20 p.m. until 3 p.m. on Tuesday, 22 July 2008.
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