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All-Party Assembly Group on Autism

Private Members’ Business – in the Northern Ireland Assembly at 2:30 pm on 31st March 2009.

Alert me about debates like this

Photo of John Dallat John Dallat Social Democratic and Labour Party 2:30 pm, 31st March 2009

The Business Committee has agreed to allow up to two hours for the debate. The proposer of the motion will have 10 minutes to propose and 10 minutes to make a winding-up speech. All other Members who wish to speak will have five minutes.

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party

I beg to move

That this Assembly expresses its concern at the high rate of autism and the consequent development challenges to Government and non-Government agencies across health, education and social care; and commends the United Nations designation of 2 April as world autism awareness day and the invitation to all Member States to observe this day annually to raise public awareness of autism.

Go raibh maith agat, a LeasCheann Comhairle. Tá áthas orm an rún áirithe seo a mholadh. On behalf of the all-party Assembly group on autism, I am pleased to propose today’s motion.

There is no doubt that autism is being recognised as a global human rights issue. The United Nations designation, which is referenced in the motion, places autism in a group of issues that requires a united push to break down the barriers that have been created by years of neglect and inequality in each member state.

For example, in Northern Ireland, since 2002, we have witnessed prevalence rates of autism rise from four in 10,000 to 71 in 10,000 and further, to one in 100. That equals 20,000 people locally with autistic spectrum disorder (ASD), and, if one counts their families, the lives of 68,000 people are touched day and daily by autism. That is a huge number of people.

The increase in autism among the school-age population from 900 to 4,000 cases among children and young people reflects a staggering 400% rise in only six years. That is due to the systemic lack of investment and cannot be explained solely by improved identification. Autism is recognised globally as the fastest rising disability, and research indicates that unmet need is causing the highest rates of mental stress in the disability sector.

Despite that evidence — and the obvious pressure and challenges that are faced by those families and providers, hundreds of whom gathered outside this Building today — services, policies, legislation and awareness have remained underfunded, underdeveloped and under-researched at Government level.

In commending the motion, I call on the Executive to take forward the first Northern Ireland ASD awareness campaign in direct response to the sentiments expressed in today’s motion and the United Nations requirement for autism awareness.

I think that this is the fourth Northern Ireland Assembly debate on the issue since 2002, and I think that it is the second or third such debate in which I have spoken. Yet none of the measures — universal ASD screening, services for adults with autism and autism legislation — that was supported unanimously in the Chamber has been put in place by the Departments concerned.

That is in spite of an unusually active parent disability lobby, which, as I said, we saw outside Parliament Buildings today. That lobby should have enabled us to transcend the barrier of shame into action long ago. The lobby is led by parents and people with autism. As I said, they brought the issue up to the steps of Stormont today and into the Chamber.

I commend the genuine commitment of, and work undertaken by, the Department of Education and the Department of Health, Social Services and Public Safety with regard to long overdue policy and service initiatives for autism. The Department of Education’s task group on autism, supplemented by a range of policy documents, has created initiatives, such as a regional ASD psychology and advisory service and the Middletown Centre for Autism.

The Department of Health, Social Services and Public Safety — and I am pleased to see the Minister here, and I welcome him — has just completed its consultation on an action plan for autism, the aim of which is to address gaps in the early-years provision by establishing a care pathway and removing the IQ barrier to service for individuals with Asperger’s syndrome. Significantly, autism has pioneered a major shift within the Department’s programme of care structures by establishing a new cross-cutting programme of care. Yet, it still appears that we are light years away from the initiative being appreciated and generalised across all Departments.

Our Departments appear to lag behind the voluntary sector, which has pioneered ASD provision within a regional and partnership perspective. It is therefore my view, and the view of the all-party group, that it is imperative that the Assembly stands up for autism, seizes the initiative and brings forward a legislative directive that creates a mechanism to ensure several outcomes.

First, it must ensure that autism is recognised and provided for in a co-ordinated manner as a social and communication disability that uniquely cuts across the remits of the Department of Health, Social Services and Public Safety, the Department of Education, Department for Employment and Learning (DEL), Department for Social Development (DSD), Department for Regional Development (DRD) and the Department of Culture, Arts and Leisure (DCAL).

Secondly, it must ensure that an autism advocate is appointed for families and individuals with ASD to undertake specific responsibilities, such as improving access to existing services to a review of outdated disability legislation, addressing “entitlement to services” issues for families and supporting families to access existing human rights and equality provisions, which are currently reporting an under-representation of cases with ASD.

Thirdly, it must ensure a regional autism strategy that crosses key Departments, involves the voluntary sector and encompasses all previous ASD policy initiatives while addressing the specific challenge of support services for life transitions into adulthood and incorporating a regional training strategy.

In proposing to introduce the autism Bill (NI) shortly, which is a legislative response to the challenge of ASD, the all-party Assembly group on autism has been informed by an independent report entitled ‘Improving Services for People with ASD’, which was produced by the Assembly Research and Library Service and published in 2008.

That report reviewed the existing legislation, policy and practice in Northern Ireland. It viewed the significance of the isolated departmental actions on autism as a stepping stone towards legislation and not as an end in themselves in view of the need to secure accurate and agreed data on the number of individuals with autism to inform and map cross-departmental planning and funding; address the gaps in existing legislation to counter discrimination — the report also confirmed the barriers in access to services; and required Government to act for autism to counteract the existing piecemeal accumulation of ASD policies that focused on individual Departments.

Within the United Kingdom and Ireland, it is time for the Northern Ireland Assembly to decide whether or not it wants to lead or follow. It is time for the Northern Ireland Assembly to stand up for autism. The Welsh Government have agreed a cross-cutting regional response that fits Wales.

In England, the Autism Bill has had its successful Second Reading, and in Scotland, a national cross-cutting strategy is being considered. Each jurisdiction must devise a response that is unique to its situation. We can look to Wales for an example of a managed, accountable ASD service infrastructure across all Departments; to Denmark for a national plan; to Sweden for legislation on the entitlement to services from Government; and to other jurisdictions as well. We can learn from the practice of other nations.

Members of the all-party Assembly group on autism ask for the support of the Chamber once again, and for the support of the disability community, in particular, as the Bill is progressed. The Bill will bring a measure of recognition and equality to autism, which will raise the profile of the whole disability sector generally. It is not about taking anything away from anyone — it is about opening the door to a disability that has been denied access because the strategies and learning techniques required have been alien to our existing structures.

Children, young people and adults with autism, as well as the families who live with them, have lobbied us hard over the past seven years. Autism advocacy groups have been building a bridge for political action so that change will happen, in our lifetime, for future generations. As the last span of that bridge is put in place, let us make sure that we also put in place the piece that is needed to meet their requirements.


Interesting, how the Assembly appears to be so very well informed and in tune with what autism is (or is not), yet the Province is so backward in terms of helping individuals with an ASD and their families.

Reading the debate, you all sounded like "experts" the very experts who I have dealt with for many years but who really didn't have a clue what my life or the life of my child is like.

Now that you are all so very well informed and care so much for parents, why the continued stalemate? It's not good enough blaming each other and scoring political points off of each other. Clearly you all have been well briefed (except for Mr McGimpsey, who referred once again to ASD as a learning disability!

So what are you going to do about it?

I don't know if any of the Assembly members have an ASD themselves or if they are personally touched by it in their immediate families but after reading this lengthy debate, I and my fellow parents who do live with autism every day could probably sort out this problem in a very short space of time, minus the political rambling.

If the Assembly members do not know autism in their lives yet, it is a good bet, that at some stage they will and I suspect that in that instance, they would look back at this debate rather sheepishly. It is your children and your grandchildren, nieces and nephews who very possibly may develop autism. When you talk about autism please know that it's a condition that exceeds the rate of childhood diabetes, AIDS, Down Syndrome and childhood cancers. It will touch you at some point down the line if it hasn't already.

This is the long and short of it - some parents believe that autism legislation is a good thing, as it appears that it might guarantee rights. Other parents are worried about legislation because they infer a lengthy wait, and limitations being legislated as opposed to being built in.

Also, those parents are worried that we will put all on hold until this nefarious legislation is enacted, that legislation is simply an attempt to buy time and not provide help.

The Health Minister is wishy washy on this point because he is afraid of legislating for rights of persons with an ASD - it's going to cost - he also knows that ASD diagnosis is increasing and will continue to increase and he doesnt know how to go forward because he doesnt have the required information. He is hedging his bets. He doesn't want to make mistakes. In protecting himself,however, he is casting our children's futures to the four winds.

My child has a statement of special educational needs, its a legal document. There isn't much written into it, and even though it's legal, it doesn't guarantee much at all for my child. Similarly, there is no guarantee that legislation is going to make a difference in terms of service, awareness, entitlement, etc until we know what that legislation is going to look like. NO one is talking about that very important aspect.

What is going to make a difference to persons with an ASD in Northern Ireland is understanding, and the will to help human beings who right now are very vulnerable in this society and believing in them, that with the right help, they can live very productive lives. Up until now, we have had a self fulfilling prophesy of no help, and lives being severely limited.

There is also an underlying belief in the health care system, that no amount of help is going to help persons with autism. This is patently untrue. Parents of newly diagnosed children are still today, advised to "not bother" or "waste their time" on their autistic children. This attitude is more common than you would think and is exhibited in the fact children indeed, are not getting the help they need. We are an embarrassment in Northern Ireland compared to other parts of the world.

Now that the Assembly members are so clued up regarding autism, I expect some positive change to happen and quickly. You appear to know all the answers so what is stopping you at departmental level from getting this Province sorted out for our children, and the children of the future, much less the adults who so very much need help and support and understanding?

There is no excuse for further delay. I will come to the Assembly myself and tell you what we need to do as will my parent colleagues.

We could make your eyes water with our stories of unrelenting hardship - but we are battle weary. We want help for our children and our families and we want to prevent other children from having their lives compromised because the Province didn't care.

Start caring and the rest will follow.

Submitted by Sara Elby

Photo of Jonathan Craig Jonathan Craig DUP 2:45 pm, 31st March 2009

I want to deal with the issue of why legislation on autism is needed here. Existing legislation does not mention ASD, and some people say that that leaves a lot of flexibility, and that the legislation is not prescriptive: in other words, by not ruling something in, you are not ruling anything else out.

However, generic provision has never worked for ASD. Generic services do not work for people with ASD — they need specialist ASD intervention. They also need clarity and structure in the intervention required for them. What works for everyone else does not work for ASD sufferers. ASD sufferers currently get such provision from specific charities. It is solely from those charities — who provide services and policies — that we have seen progress on autism.

People with ASD learn differently due to the nature of their impairment. Unique teaching strategies and training are required for those people. As a society, we need to put those in place. I have touched on the generic nature of our existing legislation, but even within that, there are sub-categories which are more detailed: for example, the Disability Discrimination Act 1995 is weighted heavily towards physical disability — it can be done.

Special needs services are required across the Department of Health, Social Services and Public Safety, the Department for Social Development and the Department for Employment and Learning. That those Departments need to work together shows the need for legislation: how else can we bring them together and make them work for the benefit of ASD sufferers?

Legislation is about giving parents official recognition, after 18 years of lobbying against denial by services and Departments, that the disability actually exists as a distinct and unique disability. It does not have to co-exist with other learning disabilities. It is unique. Legislation brings with it the imperative for action.

Legislation is essential in order to require public bodies to, for instance, improve access to services and facilities for people with ASD. Legislation is needed to establish foundations, principles and guidance for a cross-cutting regional strategy for all Northern Ireland Departments. The key obstacles to progress on ASD are lack of regional cross-departmental strategy and funding.

Each Department prefers to produce its own action plan: in 2008, the Department of Health, Social Services and Public Safety brought out its action plan; the Department of Education produced an action plan in 2009; and there are three health and social care strategies. There is no joined-up thinking about ASD sufferers.

This legislation is needed because it requires all Departments to work together strategically, rather than pay lip service to policy collaboration. Legislation is critical because current legislative recourse is having a negative impact on families, who are left in a catch-22 situation. If there is no official recognition of ASD against which to judge cases, families usually end up giving up before going to court. Many cases fail, and confusion is allowed to continue.

Legislation should recognise autism as a social and communication disability, with a range of co-morbid conditions that necessitate a unique degree of access across education, learning-disability, mental-health and sensory-disability services. Legislation should require the appointment of an ASD co-ordinator to act as an advocate for individuals with ASD and for their families.

Photo of John Dallat John Dallat Social Democratic and Labour Party

I ask the Member to bring his remarks to a close.

Photo of Jonathan Craig Jonathan Craig DUP

I certainly will, Mr Deputy Speaker. That co-ordinator will monitor and develop a cross-departmental strategy and make amendments to existing legislation. With that in mind, I support the motion.

Photo of Cathal Boylan Cathal Boylan Sinn Féin

Go raibh maith agat, a LeasCheann Comhairle. Éirím le tacaíocht a thabhairt don rún. I support the motion.

At the outset, I commend the Minister of Education for the report of the task group on autism and for the establishment and support in Middletown — in my constituency — of the all-Ireland centre of excellence for the education of children and young people with autism. In advance, I also commend the Minister of Health, Social Services and Public Safety for the forthcoming autism action plan.

Those are significant, positive milestones on the journey to address a need that is not being met. The challenge for us all is that autistic spectrum disorder does not fit neatly into one compartment. The Department of Health, Social Services and Public Safety is to be commended for considering a new, cross-cutting programme of care to include ASD.

Other Departments such as DEL, DSD and DCAL must also buy in and provide services to ASD sufferers and their families. An autism Bill is the mechanism by which to combine all responsible Departments. The Bill would establish a regional training strategy to be co-ordinated by the voluntary sector, as happens in Scotland. Specialist training of psychology, psychiatry and paediatrics staff is essential — indeed, critical — in order to achieve an accurate service system.

The North of Ireland has the highest rate of staff training in diagnostic interview for social and comm­unication disorder, autism diagnostic observation schedule and autism diagnostic interview — the main specialist training assessment tools required for ASD diagnosis. That is because Autism NI brought that training to the North in 1986, in partnership with local paediatricians.

There is also an autism diagnosticians forum, which, although independent, began as an Autism NI special-interest group. The only similar forum in existence is in Western Australia. Unlike other disabilities, autism has been subject to reliable diagnosis since only 2000. That is why the training of health visitors in detecting ASD must be more strategic and less piecemeal than current arrangements.

As far as we are aware, there have been only two health visitors who specialise in detecting ASD employed in the North on temporary contracts. Could those in the voluntary sector with relevant expertise be utilised to supplement that provision with additional quality services?

There is a major concern about the length of time it takes for assessment and diagnosis. Current waiting times range from six months to two years, which is due to a failure to prioritise and manage a co-ordinated approach to ASD rather than a lack of funding. The first spend on ASD by the Department of Health, Social Service and Public Safety was part of its Priorities for Action 2003-04 and targeted that area. Further funding has since been received.

The Department’s action plan and Priorities for Action 2009-2010 imposed a target of 13 weeks on waiting lists, in line with other health issues. However, it is difficult to adhere to that time frame when it comes to ASD, and a concern exists that the opportunity to make an accurate assessment may be lost to the pressures involved in trying to meet the deadline.

An autism Bill would encompass the Department’s action plan and Priorities for Action targets. Those would be supported by the long-term regional ASD training strategy and a mechanism for a co-ordinated, consistent, strategic service development for ASD. The Bill also addresses the issue of adult diagnosis by establishing a cross-departmental requirement to plan strategic service development with joint financing arrangements. That would mean that joint diagnostic protocols, such as assessment and treatment, could be applied to all individuals. Whether an individual was identified in education or through the criminal justice system, the same protocols would be applied as a right rather than a coincidence.

In the absence of at-home expertise, the Bill provides access to the regional ASD advocate for an expert diagnosis of complex cases out of state. That would facilitate an easy assessment of high cost, low-incidence services for ASD to assist with service development.

Photo of Cathal Boylan Cathal Boylan Sinn Féin

I will, sir.

The Bill could result in the implementation of the guidelines set by the Scottish Intercollegiate Guidelines Network and the National Institute for Health and Clinical Excellence guidelines on autism. Furthermore, early intervention is the critical next step and must be integrated into any proposed diagnostic service. I support the motion. Go raibh maith agat.

Photo of John McCallister John McCallister UUP

I thank my colleagues for helping to secure today’s important debate. Many Assembly debates are self-serving and party political, but this one addresses an issue that cuts across our entire society, and we must work collectively to make the necessary changes in service provision. Only cross-departmental working and raising community awareness will improve the lives of the thousands of people who suffer from autistic spectrum disorder in Northern Ireland.

Autism is a particularly challenging learning disability with social and behavioural implications that require support throughout an individual’s life. However, autism and autistic spectrum disorders do not receive the necessary recognition, nor do those who suffer from it receive the full range of support they require. The National Autistic Society Northern Ireland, in conjunction with Autism NI, does great work in providing support and raising awareness. The society suggests that more than 17,000 people in Northern Ireland have autism. If their families are included in the figures, more than 68,000 people in this small Province are affected by autism.

However, the society also estimates that more than 90% of people do not know how common autism is. In addition, 55% of people who have heard of autism think that it affects only children. Autistic spectrum disorder has no physical attributes, which often leads to people suffering in silence. Also, people can be misunderstood, misdiagnosed and shunned, which can lead to further isolation. Today’s debate is, therefore, crucial in raising community awareness of the problems associated with autism.

I commend the United Nations for designating 2 April as world autism awareness day, and I welcome the fact that that has initiated today’s debate.

It is crucial that, throughout their lives, people get the support that they need. That means that people who live with ASD — and their families — need prompt assessment, diagnosis, treatment and support. That support must be available as those children grow up and go through their education and further learning into adulthood. Therefore, it is crucial that Executive Departments provide integrated services, but that must take place most explicitly between the Department of Health, the Department of Education, the Department for Employment and Learning, the Department for Social Development and the Office of the First Minister and deputy First Minister.

Photo of Naomi Long Naomi Long Alliance

The Member referred to the fact that people see autism as a childhood disease. Does he agree that it is particularly important that adults who are living with autism have better access to diagnostic services so that they can take the first steps in finding their way to get the proper support that they need in order to be able to live their lives to the full?

Photo of John McCallister John McCallister UUP

I thank the Member for that useful intervention, and I agree wholeheartedly. That is critical. There are many other issues to factor in, but access to diagnostic services, as well as support throughout their lives, is critical. That is why so many Depart­ments need to be involved as those people progress through their lives. We have made progress in recent years, but there is still more work to be done.

I congratulate and thank the Minister of Health for launching the autistic spectrum disorder strategic action plan, which hopefully, will be implemented very shortly. The Minister’s proposals are influenced heavily by the excellent work of the independent review of autism services, which was chaired by Lord Maginnis. The review is designed to standardise assessment, diagnosis, treatment and support across all health trusts. The proposed regional ASD group will co-ordinate services and promote the early identification of developmental delay in children and early signs of autism. That is a much-needed change, as some families and children are waiting for up to three years to get a diagnosis, which means that they cannot get specialist educational assistance and get on to a lifetime pathway of support.

There have been calls for new legislation on autism, but the independent review highlighted categorically that it is not needed. We need to focus on the implementation of existing strategies, not on further unnecessary bureaucracy.

It would be remiss of me not to address a debate on autism without raising the serious reservations that I have about the appropriateness or potential effectiveness of the Department of Education’s proposed Middletown centre of excellence for autism.

That centre will be neither central nor excellent. It is my firm belief that the project is a white elephant that will serve a few at the expense of the majority of sufferers, and it may not even be appropriate for those who are lucky enough to gain a place in it. There are serious reservations about the medical provisions that are available to autistic children in the area and about how the centre will provide excellence in assessment, research, training and learning support in such an isolated location. How will parents, let alone specialists who are stationed in population centres, assess and be attracted to the proposed facility? There appears to have been no forward planning in the choice of the site for the centre of autism.

Photo of John Dallat John Dallat Social Democratic and Labour Party

I ask the Member to please draw his remarks to a close.

Photo of John McCallister John McCallister UUP

We have been left with a potential drain on much-needed resources.

I support the motion.

Photo of Kieran McCarthy Kieran McCarthy Alliance

On behalf of the Alliance Party, the all-party Assembly group on autism, and the United Community group, I support this important motion fully.

I was extremely proud and humbled to be part of the Stand up for Autism rally outside Parliament Buildings earlier today and to be standing shoulder to shoulder with people who are at the coalface and who know exactly what is required. The Assembly must lead from the front, and all Departments must give priority to providing the necessary support to everyone with autism, both young and old.

It is a sad fact that the number of people with autism is increasing, and it is incumbent on all of us, particularly those who are in Government, to act accordingly.

I pay tribute to organisations such as Autism Northern Ireland, the National Autistic Society Northern Ireland, and other organisations and individuals at the forefront of providing support and counsel to people with autism and their families. So much progress is being made on a worldwide basis, and we are part of that progress. Some of us recently visited the US, a trip that culminated in the signing of a memorandum of understanding on Capitol Hill. Of course, we are all working together locally in the Celtic Nations Autism Partnership to make things better.

It is now time for action to be taken across all Departments in Northern Ireland; there can be no more excuses. People on the ground with experience of the needs of those with autism know what is required.

As indicated by Dominic Bradley, the chairperson of the all-party group, the Assembly must now support the autism Bill and put the legal framework into operation as soon as possible. That Bill will ensure that people with autism get the right access to services in areas such as health, social care, education, employment and so on. Although I am glad that the Minister of Health is here today, autism is not his sole responsibility; the other Ministers in the Executive have a responsibility to get their teeth into this and to get on with it.

The Bill should recommend that an autism co-ordinator be appointed to ensure cross-departmental service development, and it should also contain a strategy to link all Departments together. Furthermore, it should provide trusts with suitably qualified and trained professional staff, and make provision for support and information for those with autism. Critical to all of that must be a ring-fencing of funding to deliver the ASD strategy.

In May 2008, the independent review of autism services, chaired by Lord Maginnis, produced an extremely detailed report with a number of crucial recommendations. Those recommendations must be adopted and worked on to provide the best — and nothing but the best — services, now and in the future, for those with autism.

I recently received some correspondence from the parents of a youngster, pleading for proper planning for young adults with autism. Funding should be made available for support, including learning and useful stimulation, and the desire to care for youngsters in a family setting. Those are fairly basic requests, and the Assembly must surely do what it can to support that youngster and their family. Indeed, that request could be repeated over and over again throughout Northern Ireland. If the Assembly is to mean anything at all, it must listen to the cries of ordinary people. We cannot let those people down; let us bring ASD to the top of our agenda.

Thursday 2 April marks world autism day. That day has been adopted by the United Nations General Assembly, and we are delighted to be part of it. This Thursday will see autism organisations across the globe call on their Governments for the help that is the entitlement of all people with autism.

I plead with the Assembly, and more importantly with our Executive, to stand up for autism as we have done today. Those with autism need, deserve and must have the same opportunities as everyone else in our society, from birth right through life’s journey. Remember, children with autism grow into adults with autism —

Photo of John Dallat John Dallat Social Democratic and Labour Party

Will the Member please bring his remarks to a close?

Photo of Kieran McCarthy Kieran McCarthy Alliance

It is our duty to support those with autism all the way. I support the motion.

Photo of Ian McCrea Ian McCrea DUP

Like all the other Members who have spoken in the debate today, I support the motion. I put on record my appreciation to Arlene Cassidy from Autism NI and the former Speaker of the Assembly, Eileen Bell, who has worked tirelessly alongside staff to provide the secretariat services for the all-party Assembly group on autism. I also want to mention the National Autistic Society, which also carries out very sterling work. However, and more importantly, it would be remiss of me not to mention the parents and family members of those who suffer from ASD.

I wish to deal with early or rapid intervention. Early intervention gives meaning, moral justification and substance to the diagnostic label of autism. Without it, diagnosis is a cold instrument of truth. Early intervention has been led by the voluntary sector. Some commentators say that there is an over-diagnosis of autism in Northern Ireland and that there is no need to label individuals as autistic, because that prevents inclusion. Data on autism is poor, and parents seek a diagnosis to give them direction and support, which is not available in our society.

One might ask from where those commentators get their evidence? Worldwide research on early intervention across the disability community proves its cost-effect­iveness, and research in the field of ASD has confirmed that to be the case here as well.

Early intervention in ASD is a specialist area, and it is difficult to access in many parts of Northern Ireland. Therefore, a diagnosis is often the gateway to that provision. Early-intervention strategies for ASD are good models of practice for all people. An effective assessment and diagnostic process will inform the content of early or rapid intervention, which is based on individual need. Rapid intervention is rare, due to the lack of adult diagnostic services and patchy treatment services.

The current process of diagnosis is too slow. A child might not see a specialist for 18 months or two years — if they are lucky — after his or her parent has brought him or her to the GP, during which time the child could have been in an appropriate behaviour programme.

Some infants who are suspected of having autism reach school age before they see a specialist. That cannot be allowed to continue. Early and rapid intervention is essential to ensure that the child is placed in a programme and receives the best level of care.

The role of the voluntary sector in providing a voice for the needs of parents is vital. The Department of Health, Social Services and Public Safety action plan has failed to give the voluntary sector a strategic integrated role. Only an autism Bill (Northern Ireland) will be able to provide that advocate for parents and strategic planning for an integrated role for the voluntary sector.

The keyhole jigsaw of early intervention programme is proven but not applied comprehensively across Northern Ireland. That programme has been the subject of five research reports by the University of Ulster, and it has achieved international recognition. It is a product of a unique partnership of voluntary and statutory agencies alongside parents in Northern Ireland. The keyhole jigsaw of early intervention programme includes a resource kit for families, pre diagnosis; a training programme for preschool playgroups; a training programme for parents; and a six-month home visit programme for the child.

Unfortunately, the programme does not have recurrent funding anywhere in Northern Ireland, although various boards and trusts have purchased or implemented parts of it. The programme design means that it must be a voluntary and statutory partnership. The content of the keyhole jigsaw of early intervention programme can be updated. Currently, it provides access to all ASD interventions and strategies.

There is a lack of co-ordinated action, and the problem with the current system is that it works against main­streaming innovative practice. The Department of Health, Social Services and Public Safety action plan is limited to children’s services for the next three years, and the priorities for action for 2009 refer to the importance of early intervention and set 13-week targets for access to specialist treatment, but do not specify the existence of a pre-existing mechanism.

An autism Bill would provide for an autism advocate for parents and an integrated strategy that will facilitate quality programmes and rapid intervention treatments for adults. The absence of a co-ordinated regional response to early intervention has alienated families and encouraged them to become supporters of various separate strategies. There needs to be a mechanism for parents to access all appropriate interventions and intensive treatments within the keyhole jigsaw of early intervention programme. I support the motion.

Photo of Peter Weir Peter Weir DUP 3:15 pm, 31st March 2009

Unlike a number of the Members who have spoken in the debate, I am not a member of the all-party Assembly group on autism. I commend the motion that is before the House and welcome the fact that it is in the Order Paper. I wish to concentrate on one aspect, although I commend 90% of the remarks that have been made by Members who have spoken.

I take a degree of issue with what Mr McCallister said about there being no need for legislation; I believe that there is such a need.

Photo of Peter Weir Peter Weir DUP

I will give way in a second or two.

I would also like to think that I would keep more of an open mind than he has about the Middletown centre for autism.

I am happy to give way to Mr Bradley.

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party

I thank the Member for giving way. Is the Member aware that over the past number of months, Mr McCallister has supported an autism Bill faithfully and only last week offered to sign up his support for it? However, today he tells us that he is opposed to it.

Photo of Peter Weir Peter Weir DUP

Mr McCallister will have to answer for himself on that point — one can only speculate as to his motivation if he has performed a U-turn on the matter, although we can probably use some guesswork in identifying that.

As I indicated, a lot of good points have been made in this debate. I want to concentrate on a matter that has been touched on by only a couple of the Members who have spoken but that is one that I consider to be equally valid. That is the problem of adults with autism. A good deal of attention has — rightly — been paid to the importance of having early intervention and enough protection for children with autism; however, in many ways, the issue of adults with autism sometimes becomes the Cinderella issue of the autism debate and can be ignored slightly.

In that respect, I commend the good work that the National Autistic Society has done to highlight that issue. That organisation has produced an excellent publication entitled ‘I exist: The Message from Adults with Autism’. That document details the results of a survey that showed that, of the adults with autism who took part in the survey, 96% feel that with more support they would feel less isolated, 34% have experienced severe mental-health difficulties, and 57% suffer from depression.

There is a tendency to think of autism as purely a childhood issue, particularly because of the impact that it has on our education system. However, statistics show that one in 100 people suffer from some form of autism, which is a condition that affects people throughout their entire lives. As the National Autistic Society puts it, the challenge is to think differently, act positively and transform lives.

Although the National Autistic Society is doing good work with such things as its Help! programme, which provides degrees of support to families and carers, the level of support that exists in Northern Ireland for adults with autism is, at best, very patchy. Of the five trusts, one provides more or less permanent family support workers, two other trusts have funding for a family support worker who is provided simply on a one-year basis, therefore calling into question whether that provision will be renewed, and two others provide no support whatever.

As Mr Boylan indicated, in Northern Ireland there are now high levels of training in the diagnosis of autism in the children’s sector. However, many adults with autism have gone undiagnosed for years, and it may be that their symptoms are only properly described when they are bringing a member of their family for diagnosis. We need to give the same level of support to adult diagnosis. In relation to the literacy aspect, we need to ensure that there is proper provision in the learning disability budget for the full range of autism services and that a certain amount of money is autism specific.

As the National Autistic Society indicated, we must ensure that, when it is implemented, the ASD strategic action plan meets the needs of adults with autism. We need to ensure that the plan is fit for purpose and, to help us to do that, the National Autistic Society has identified six objectives that should be met.

First, the local trusts must record the number of adults with autism in their areas. I believe that, until now, there has been a weakness in that area. Secondly, there should be a named professional in each trust area who is responsible for diagnosing adults with autism. Thirdly, health and social care trusts should establish a clear route to enable adults with Asperger syndrome or high-functioning autism to access assessment and support. Fourthly, health professionals who are in regular contact with adults with autism must be trained properly. Fifthly, adults with autism and their families and carers should be involved in the development of services — we cannot simply have something imposed on people; we need to work with them. Finally, the new autism-spectrum services should be developed for adults, their families and their carers.

We need to give that support across the spectrum. Much good work has been done, but there is a good lot to be done. Obviously, it is an interdepartmental issue. However, in tackling the great problem of the provision for autism, we must ensure that, in providing the best of services, adults with autism are not simply ignored. I urge Members to support the motion.

Photo of George Savage George Savage UUP

I declare an interest as secretary of the all-party Assembly group on autism, and I support the motion. However, I wish to speak about a number of matters that worry me greatly about how we deal with autism in Northern Ireland.

The Minister of Education has gone out of her way to push for an autism facility at Middletown, which has the potential, dare I say it, to become a major North/South white elephant. Already, the Minister has spent more than £3·4 million of taxpayers’ money on that facility, and yet not one child has benefited. Members have raised concerns about the facility with the Minister on numerous occasions. However, she has continually dismissed any points that have been raised.

I am concerned that a huge amount of resources will be wasted in bringing children out of their local, stable environment for a five-week period, unsettling them ― which, as any parent of an autistic child would tell you, is not a good idea ― and then, when the five weeks are over, pushing them back to their home environment.

We need a proper autism strategy in Northern Ireland — not legislation. Parents want to see delivery on the ground, and that is where the help is needed. We need local services, delivered locally, with early identification, early assessment and diagnosis and, most importantly, early intervention.

Shortly after assuming office, my colleague, the Minister of Health, Social Services and Public Safely, recognised that autism was a major issue. He was determined to take action and initiated the independent review of autism services, so that a clear strategy could be developed for future services. The independent review — chaired by Lord Maginnis, as my colleague has just said — made a number of clear recommend­ations, and it also had its own concerns about the facility at Middletown. The fact that an international panel of autism experts has misgivings about the centre, clearly leads one to conclude that that facility has not been considered properly.

The purchase of the Middletown site cost millions, refurbishing it will cost more millions, and yet, in the whole process, not one autism expert has been even consulted. At departmental level in the Department of Education, not one autism expert is employed to head up that and other projects affecting autistic children, and, in this day and age, that is just not on.

We need to invest our money in local services — not buildings detached from population centres. We must provide the parents of autistic children with the help and support that they need, properly funded, rather than trying to make a name for any particular organisation by trying to create an autism Bill that would not be worth the paper on which it was written.

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party

Will the Member confirm whether he has signed a pledge of support for an autism Bill for Northern Ireland?

Photo of George Savage George Savage UUP

We certainly support the bid for a new autism centre; however, we have information on the report on autism services in Northern Ireland.

I want to make a few comments regarding Autism NI. I readily acknowledge the wide range of work that that organisation undertakes and has been providing throughout the Health Service here for many years. However, I have a number of concerns about recent activities. I have received complaints from parents of autistic children who are dissatisfied with the direction that Autism NI has taken regarding legislation.

The reality is that, despite devoting much time, energy and money to that cause, a proposed autism Bill will not provide any assistance to parents where they need it most.

It is most disturbing that Autism Northern Ireland has spent thousands of pounds courting Members of Parliament and Members of this House, yet parents across the country are crying out for help. I appeal to Autism Northern Ireland to work with all shareholders to address the current need. As Lord Maginnis’s —

Photo of John Dallat John Dallat Social Democratic and Labour Party 3:30 pm, 31st March 2009

Order, please. I am finding it difficult to hear the Member. Other Members should give the Member their attention.

Photo of George Savage George Savage UUP

I will draw my remarks to a close. All that my party and I want is to ensure that the parents of autistic children in Northern Ireland receive all the help that they need.

Photo of Pat Ramsey Pat Ramsey Social Democratic and Labour Party

I welcome and support today’s motion. It is clear that the all-party Assembly group on autism is standing up for autism by bringing forward the draft autism Bill on behalf of the parents, the carers and the health organisations that it represents. I was very disappointed that the Member who spoke previously said that thousands of pounds have been spent by an organisation in order to court Assembly Members. At some stage, that statement should be withdrawn, because it is unfair and incorrect. It impugns the character of so many people who work and care for people with autism.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

Does the Member agree that the Member who spoke previously made those comments to deflect from the fact that his party does not stand up for people with autism?

Photo of Pat Ramsey Pat Ramsey Social Democratic and Labour Party

That is the case. That party will have to defend its position, because it signed up for the proposals one day and withdrew its support the next.

The awareness of autism is increasing due to well-organised campaigns that are mounted by Autism Northern Ireland, which is a local charity that consists of parents, professionals, support groups, friends, acquaintances and constituents. Thankfully, people are becoming more aware of what autistic spectrum disorders are. That is to be appreciated, given that those disorders affect 20,000 people across Northern Ireland.

Unfortunately, there is still a lack of understanding of autism, as it is a hidden and very diverse condition. However, there is scope for that understanding to improve. That is one of the reasons why Members feel that it is appropriate to bring forward an autism Bill for Northern Ireland.

The motion draws attention to the challenges of the health, educational and social care needs of people with autistic spectrum disorder. I will briefly address some of those needs in turn. In recent years, parents have become increasingly concerned about the inadequacy of services in Northern Ireland for individuals with autism and, in particular, Asperger’s syndrome. It is generally thought that parents of autistic children are more likely to see their child’s special health needs going unmet.

Many autistic children have additional physical and mental-health needs. Parents who care for autistic children face a significantly greater burden as they try to deal with their emotional, developmental and behavioural problems. Many parents in that position have to cut back on the hours that they work, and single parents may have to quit their jobs altogether to look after their autistic children.

We currently face a range of problems with autism, such as the waiting lists for diagnosis of autism; the diagnostic process itself; intervention after diagnosis; day services; and respite — the list is by no means exhaustive. Although recommendations have been made about those issues, we need to see more action and improvements. The Health Service must enhance diagnostic assessment and early intervention services for children and young people. It is essential that medical professionals work in partnership to address the needs of individuals who suffer from autism.

As a number of Members have stated, older individuals with autism are falling through the system’s cracks. That has huge implications for their development, life and social skills, and their mental health. That issue has been raised by mental-health organisations, parents and carers.

Autism and education is a hot topic for schools and parents in Northern Ireland and around the world as the occurrence of autism in children increases, unfortunately, very rapidly. Today, teachers have a much higher number of autistic children in their classrooms than was the case a decade ago. For that reason, it is very important that all children receive appropriate education and structured support. That support must be made available to help to maximise skills and to enable every child to achieve their full potential, not only in childhood, but in adulthood.

In May 2008, the independent review of autism services recommended that autism-awareness training should be part of teacher-training courses, and that is an important point. It is crucial that a teacher can address the ongoing and changing needs of the child growing up in the education system.

Autistic spectrum disorders are lifelong developmental disabilities. There is a mistaken belief that autism affects only children. Worryingly, people do not realise that difficulties continue into, and right through, adulthood. As a society, we should try our best to learn and understand what adult autism is all about, what it is like and the unfortunate circumstances that lead up to it. We must also find the best way to help and give comfort and support to adults with autism.

The National Autistic Society reported that 63% of adults with ASD say that they do not get enough support to meet their needs. That is another challenge for the Minister of Health, Social Services and Public Safety, and I am delighted that he is present for today’s debate. Many parents and carers do not get enough support from statutory agencies, and some have yet to receive a carers’ assessment. There is little guidance for professionals who carry out assessments, and, because of communication difficulties, it is not always easy to identify the needs of an adult with ASD.

The motion is timely and the SDLP supports it, and, more importantly, the autism Bill that I hope will be brought before this Chamber on behalf of parents in Northern Ireland.

Photo of Lord Maurice Morrow Lord Maurice Morrow DUP

At the outset, I apologise for not being present at the start of the debate, but I was chairing the Committee on Procedures.

I welcome the opportunity to speak on this timely motion, which raises an important issue. It is imperative that the nature and expression of this disorder are further highlighted and, consequently, understood by society to ensure that sufferers are neither penalised nor marginalised during their lives as a result of collective ignorance about their condition and symptoms.

Autism and Asperger’s syndrome are wide-ranging conditions with varying degrees of seriousness. Autism is known as a lifelong developmental disability, and sufferers share three main areas of difficulty that affect them in different ways. Those three social categories are communication, interaction and imagination — routine experiences that we take for granted day in and day out. However, for autism sufferers, those matters are not straightforward and can impact severely on their daily life and the daily lives of their families and carers. Thus, a specialist programme must be put in place to help sufferers to deal with daily living, while sensitively handling their specific needs.

The matter does not apply only to selective education, because when the school bell rings, the autistic child’s difficulties do not immediately stop. As with most conditions, their needs are constant and continuous, but care and support levels have fallen far short of those provided for other learning disabilities.

Similarly, what of the teenage and adult sufferers of ASD? What sort of support is in place for their specific needs? The independent review of autism services recognised the lack of ASD services across Northern Ireland, particularly for older adolescents and adults. Consequently, the review team’s main focus was to develop specialist ASD services, while emphasising the need to create more co-ordination and cohesion across the broad range of services that are required.

The team found that the main delay in progress and the lack of specific services came down to financial constraints. It is therefore essential that a pragmatic approach is adopted to ensure that the needs of ASD sufferers are seen as a priority, given that they have been somewhat short-changed in the past, possibly through a lack of pertinent knowledge. Thankfully, we are at last witnessing a change in that regard, and ASD is becoming a more widely known and understood condition. However, I must admit that I was shocked by the figures for Northern Ireland, and I had not fully comprehended the extent of the issue.

Alongside educational service and care support, however, there needs to be a faster and more streamlined diagnosis for those who may be affected. In some areas, a child has had to wait for up to 26 months to be assessed. That is a long time for a parent coping with a young child with learning difficulties, and, surely, in our modern society, that is totally unacceptable and needs to be changed. I hope that the Minister will take a long, hard look at that situation.

In a statement last June, the Health Minister acknowledged the need to address the shortfall in ASD services in areas such as workforce, specialist assessment, early intervention, structured behavioural interventions and family support. I welcome the fact that the Minister is fully aware of the situation, and would hope that he plans to fast-track proposals for the implementation of the review team’s recommendations.

I will conclude by paying tribute to parents, charities, carers, support groups and others who have championed this cause, and led to a serious rethink in relation to ASD and, indeed, at times —

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party

Will the Member join me in expressing his disappointment at the remarks made by Mr Savage in the Chamber earlier? Will he also join me in dissociating himself from those remarks, and in describing them as disgraceful and demanding that Mr Savage withdraws those remarks?

Photo of Lord Maurice Morrow Lord Maurice Morrow DUP

I have to say that I did not hear the remarks of Mr Savage, because Mr Savage was on his feet speaking when I came into the House. So, I cannot truthfully comment on what Mr Savage did or did not say. I understand that he did cause constern­ation among some Members around the House in whatever he said, but I must emphasise that I did not hear his comments.

Finally, I warmly congratulate all those who have, at times, ploughed a very lonely furrow when the condition of ASD was neglected and not appreciated or understood by many people. It is because of the campaigning and championing of the issue by many people that we are debating it in the House today. I trust that the Minister, and the rest of us, will be more appreciative and understanding of the subject.

Photo of Mark Durkan Mark Durkan Leader of the Social Democratic & Labour Party

Like others, I support the motion. Some important and positive points have been made in the debate. One of those has been the repeated emphasis of the need to recognise the number of adults with autism. In the past, a lot of our debates have, naturally and understandably, focused on children with autism, the need for diagnosis and services and the pressures faced by their families. However, the increasing recognition of the needs and circumstances of adults with autism is a very positive development and is, in many ways, a credit to a lot of the organisations that have campaigned on the issue, including very strong campaigns such as the “I Exist” campaign, which I helped to launch here and in different aspects of which others, too, have been involved.

There is increasing awareness of autism at a certain public-policy level. The general public, too, maybe has an increased awareness of autism partly as a result of the campaigns that I have mentioned and partly through some media depictions of people at various points of autistic spectrum disorder. However, that in many ways leads to an assumption that there has been a comparable increase in the provision and development of services, resources and policy commitments to meet that wider public understanding. Many people assume that, because more people are being diagnosed, and because the statistics are becoming stronger, that, somehow, services are being topped up commensurately, and, clearly, that is not the case.

It is the case all too often that parents of children who have been diagnosed as autistic have to navigate their way through systems and negotiate between services as though they are the first to be in that situation.

It is an indictment of us all, and of the logic of the public-policy system, that that is still the case. There is better understanding and awareness, yet when the stage of diagnosis is reached — and we have heard much about the long wait to get to that — they find themselves still in a limbo.

Parents have to do more and more research into the condition to find out different aspects for themselves. They have to surf between the various organisations and charities to gain more awareness and find out more information and greater detail about potential services. They find themselves pushed about from one service provider to another, and they hear phrases such as, “not quite fitting our budget”, “we do not have a proposal yet” and “that is a good idea and we will work on something there”.

That is why the all-party Assembly group on autism is such a useful instrument. It helps to bring together the different experiences and frustrations that Members encounter in their constituencies, and it provides a platform for the ideas of the various organisations which deal with those issues.

I welcome the Health Minister’s presence at the debate and the commitments that he has made. We have a strategic action plan, and it is very welcome, even if some Members want it to contain more or believe that the plan does not go far enough. We might raise questions about the other Departments and ask whether they will play their part.

I also recognise the work of the independent review of autism services, chaired by Lord Maginnis. He has issues about the Middletown Centre for Autism, which he raised yesterday at the meeting of the British-Irish Parliamentary Assembly. There is an argument that that centre is a prestige project that does not deal with everything. However, let us be clear: it is a positive and important commitment, and it plays a positive role. Just as one size does not fit all, one centre does not fit all. That centre is not an adequate response, and we need a much more articulate and guaranteed provision of services at all levels and in all localities.

That brings me to the point of a Bill. I am perturbed to hear Members pour cold water on the idea of a Bill. We have had positive commitments in the past: when the taskforce reported a number of years ago, very strong commitments were made by the Department of Health, Social Services and Public Safety and the Department of Education and yet we have not seen them fully put into practice. Only a Bill will give us that sort of guarantee. That is why I supported the private Member’s Autism Bill for England and Wales in Westminster a few weeks ago: it creates an important precedent. If MPs vote that Bill through Westminster, there will be no argument against a similar Bill in this Assembly.

Why Members of this Assembly should argue against legislating on the issue I am at a loss to understand.

Photo of Mervyn Storey Mervyn Storey DUP 3:45 pm, 31st March 2009

I will speak first as the Chairperson of the Committee for Education. The issue has been brought to our attention, and it is relevant to the Education Department.

I will set in context what the Committee has heard over the past two years. It has received various briefings from Autism NI, for example; a joint briefing with the Committee for Health, Social Services and Public Safety; a meeting with the parents of children with ASD from Lisburn; and a meeting with Hugh Morgan, the implementation manger of the autistic spectrum disorder strategic action plan for Wales. The Committee’s Deputy Chairperson represented the Committee on an Autism NI-organised Celtic Nations Autism Partnership visit to the US, where it met representatives of similar organisations in Washington in September 2007. The Committee is also scheduled to meet with Wendy Lawson, an advocate for people with autism, with Autism NI on 28 April.

In October last year, the Committee heard from the chief executive of the Middletown Centre for Autism and some of his senior colleagues. The Committee raised a number of concerns at that time and received detailed responses from the centre and the Department of Education. I will return to those when, in a few moments, I speak as a Member. One key issue raised was the need for an overall strategy for autism in Northern Ireland. Previously, the Committee had heard from Hugh Morgan, on his role to oversee the implementation of the all-Wales autism strategy.

The Committee for Education received a compre­hensive update, a briefing paper from the Department of Education, in September 2008, which included statistics on the prevalence of ASD and the educational provision —

Photo of William McCrea William McCrea DUP

I thank the Member for giving way. Does he accept that although we have heard the statistics, which are very important, we need to always be very careful to remember that those statistics represent people? Behind every one of those people is a family that is, in many ways, at a loss to know what to do. Therefore, as legislators, we must ensure that everything is done to help those families through their time of crisis, and continuing crisis, in their family’s development.

Photo of Mervyn Storey Mervyn Storey DUP

I concur with the Member’s comments. We always need to keep that focus when debating these issues and we cannot allow statistics to get in the way of reality. Children, young people and their families have huge issues to face as a result of dealing with ASD.

The issue of specific legislation was raised. I am happy to make available to Members the report that the Department of Education prepared for the Education Committee. It is worthwhile reading that report: it certainly gave the Committee a very informed perspective on legislation and other issues around ASD. One issue arising from that paper, and from other recent and very welcome initiatives that address the early diagnosis and assessment of children — including funding from the Minister of Health, Social Services and Public Safety — is the need for a Northern Ireland strategy for autism. Time and again we keep coming back to that, and it is something that needs to be underscored by the debate.

There needs to be a cross-departmental strategy involving the Department of Education, the Department of Health, the Department for Employment and Learning, and others, together with voluntary sector interests and the Middletown Centre for Autism. The template for that has been developed in Wales. It raises the question of whether we need a champion for autism. After today’s debate, I certainly do not think that that champion will be Mr Savage. One Department must take the lead on that work, and I note that the Health Minister is due to respond to the debate.

Very briefly, I will talk about issues that the parent of two boys with Asperger’s syndrome raised with me today. Knowing that this debate was coming up, she sent me a text message summarising the issues she deals with as the parent of two boys with Asperger’s syndrome. Networking of services, early grief counselling for parents of newly diagnosed children, and continued support services for teenagers who have ASD are all issues. The other issue was around education and support for carers. We need to remember the carers of, and the people involved in caring for, people with ASD.

In conclusion, there needs to be more training in recognising ASD, and it should be part of the profess­ional training of all front line health and education professionals. All staff working with children and adults should be alert to the telltale signs of ASD. A clear referral route should be established, with key workers appointed to provide support to individuals and their families. I support the motion.

Photo of Brian Wilson Brian Wilson Green

As a member of the all-party group on autism, I support the motion. As the Members who spoke previously have pointed out, there have been a number of important and positive milestones on the journey towards meeting the needs of people with autism. I particularly welcome the fact that the Department of Health is considering a new cross-cutting programme of care that will include ASD. However, there is a long way to go to provide satisfactory services. What about the services provided by other Departments: DCAL, DEL, DSD and so on? We need a mechanism to join together all Departments and services for people with ASD and their families. That mechanism is the proposed autism Bill.

The Assembly research paper, ‘Improving Services for People with ASD’, must be given serious consid­eration, along with the response from the all-party group on autism.

Autism is a lifelong condition, and anyone with it needs support throughout his or her life. The needs of individuals with autism are wide-ranging. Autism is a neurological disability that requires specialist prog­rammes that are supported by specific assessment tools, such as the diagnostic interview for social and communication disorders, the autism diagnostic observation schedule and the autistic diagnostic interview – revised.

Those types of intervention range across health and education and include behavioural treatments, education-based approaches and visual communication systems. The Bamford Review, in its limited consideration of the provision of services to individuals with ASD, pointed out the importance of good systems of training.

The “I Exist” campaign highlighted the gap between the support that adults with ASD need and what they actually receive. The fact that there is no accurate figure for the number of people suffering from ASD is a major problem for service provision. The lack of co-ordination across services and Departments is a significant factor in limiting service development and funding priorities. However, a review of the research evidence suggests that there is a lack of available services for people with ASD. Services are inadequate, and they can also take years to obtain, when early intervention is so important.

There are three main options for improving on ASD services. First, the Government can continue to use the existing policy mechanisms to provide services for individuals with ASD but apply extra funding. The Department’s action plan takes that route, and that is not adequate. Secondly, the Government can strategically examine what they want to achieve in providing ASD services and can develop a civic, cross-cutting strategy to improve on the co-ordination of the services and eliminate gaps.

The all-party group proposes that a third option be taken. The Government can create a legal obligation for action on ASD by enshrining it in legislation. That approach is taken by the Autism Bill, and we believe that that is the way forward. There is no legislation in the United Kingdom or Ireland that is specific to ASD. ASD-specific legislation is needed, and the all-party group proposes a number of options.

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party

Will the Member agree that the position of the Ulster Unionist Party on an autism Bill is, to put it mildly, all over the place? A Member from that party who spoke supported the Bill last week but does not support it this week. A Member from that party signed the petition of support to the Bill last week but withdrew his name this week. At Westminster, the private Member’s Bill is supported by the Ulster Unionists’ sister party, the Tories. Indeed, that Bill is being advanced by a Tory.

Photo of Brian Wilson Brian Wilson Green

I agree; I am not particularly clear on where the Ulster Unionists stand on the issue. Legislation is essential.

First, legislation that relates to information gathering, similar to that which exists in the United States, is inadequate. That type of legislation ensures that research is being funded and carried out to map ASD with a specific aim to inform service planning. Secondly, legislation can be sought to counter discrimination against people with ASD, including filling the gaps where existing legislation is believed not to be adequate. The third option is to create legislation that requires Government to provide autism services or which establishes a specific autism strategy. That is addressed by the Autism Bill.

Therefore, I appeal to the disability community to support the legislation, and I support the motion.

Photo of Michael McGimpsey Michael McGimpsey UUP

I thank the proposers of the motion. The debate has been interesting, although Members have talked a lot about legislation and not enough about what needs to be done.

Given the importance and priority that all of us attach to autistic spectrum disorder (ASD), the debate provides a welcome opportunity to outline the way forward. Prevalence rates have been discussed and argued over by experts for many years. There is no universally accepted figure. However, the medical-research figure of approximately 90 cases per 10,000 people provides a useful starting point.

It would be a mistake to suggest that any one exercise or action will lead to the identification of all ASD cases in Northern Ireland. One of my first actions as Health Minister was to set up an independent review of autism services, which was chaired by Lord Maginnis. That did not need legislation forcing me to do it: I did it because I knew that it needed to be done.

Following on from that review, my Department is preparing an ASD action plan, which will be published shortly. The plan will promote earlier identification and diagnosis. It will also ensure better co-ordination and collaboration with other agencies and Departments to provide services that are linked to people who are affected by ASD at all stages of their lives. Some Members made those points. Perhaps not all Members have had time to read the action plan.

It will take time, plus the co-operation of different Departments and agencies together with the expertise that is available in the voluntary and community sector, to compile an overall picture of all of those who are affected. Even when that is done, there will still be cases where people have not had contact with providers or a need for services, including health and social care, further education, social security or specific housing needs.

The absence of a quick fix or any easy answer should not deflect us from the task of compiling data to piece together more accurate figures for the numbers that are involved. That information will help to inform the development of a range of services across a range of Departments. Research on ASD is under way across the world, and new ideas and information will inform the development of services. As we gain more under­standing, we can develop and refine our services, and also promote awareness and more targeted training to help us to understand ASD and to help individual families and carers.

We need to promote an understanding that individuals can be affected by autism in different ways and to different extents. As a result, some people need different types and levels of help. The most effective response that we can offer is a wide range of services that can address the needs of individual cases. Many of us have an understanding of the challenges that are faced by individuals, their families and carers, including difficulties with language and communication; with social and emotional interaction; and with flexibility of thought and imagination. That can be associated with a range of learning disabilities and other conditions, which can make diagnosis extremely difficult.

Many individuals who are affected by ASD may have no learning disabilities. Some people with ASD will have average or above-average intelligence. Some people can seem to function in everyday life, but may struggle with social interaction or with transitions through different stages of their lives. Some might live their lives in a state of constant distress. If we are to cover all of the need for all cases, we must ensure that the policies, services and approaches that we develop fit together. That needs to cover issues that include health and social care, social security, education, further education, housing, employment and leisure facilities.

There have been some calls for autism-specific legislation. My response was to put that question to an independent review of autism services. The review team concluded that it did not regard autism-specific legislation as necessary or appropriate at this stage. Indeed, I have listened to the debate and I am still waiting to hear what exactly is missing from Northern Ireland’s legislation that I need to put in place in order to allow me to address those needs. We already have full-scale equality and disability legislation — more than any other part of the UK.

That does not suggest that autism is less of a priority, or less of a challenge for families or individuals, or that the gap between the services that we have and those that we need is reduced in any way. If anyone doubts the urgency and importance that are attached to autism services, they can look at the actions that I have taken.

I announced an independent review and, 12 months later, published a draft strategic action plan for public consultation. I am sure that Members will agree that actions speak louder than legislation. After the consult­ation, I anticipate that the full action plan will be published in May.

Photo of Kieran McCarthy Kieran McCarthy Alliance 4:00 pm, 31st March 2009

I thank the Minister for giving way. The longer I listen to the Minister’s response to the debate, the angrier I become. If the Minister had been outside the Building today, he would have seen at first hand the number of people that are crying out for help. I can speak with some authority, because although it is not in the same bracket as autism, I know exactly what people with young people need at the moment. The Minister is rambling, and he does not seem close to outlining the help that those people will receive. They do not need help next year or the year after — they need it now. On behalf of the people who have come here today, I plead with the Minister — and other Ministers — to get their head around this issue and to provide the services now that those people need.

Photo of Michael McGimpsey Michael McGimpsey UUP

That was a ramble if ever there was one. Mr McCarthy has, clearly, not listened to a word that I have said. I am taking action, and that is why I have produced the strategy and the action plan. The proposed full action plan will be ready for publication in May 2010. I cannot be any clearer.

I intend to improve autism services without preventing people from accessing other services or promoting competition between different groups that lobby for resources. Part of the problem is that nobody has identified a specific legislative gap that needs filled. The range of powers available to me is already broad and comprehensive. If we are unable to deliver a service or an action at some point in the future because of legal barriers, we can revisit the issue then. For the time being, that seems unlikely.

Photo of Michael McGimpsey Michael McGimpsey UUP

No; I will carry on for a minute, and then let the Member in.

Meeting the respite needs of individuals who are affected by learning disabilities — including autism — is a high priority for everyone. Plans are in place to gain more detailed information on respite services across all the health and social care trusts. That will provide a clearer picture of the overall provision and inform the process of developing respite services in the future.

Photo of Mark Durkan Mark Durkan Leader of the Social Democratic & Labour Party

I thank the Minister for giving way. We must be careful about contraposing the strategy and action plan that the Minister has mentioned with the need for legislation. Those of us who argue for the introduction of legislation do not support it at the expense of a strategy or action plan. However, those who argue against legislation seem to support a strategy without legislation.

Has the Minister read the private Member’s Bill at Westminster? Essentially, it covers the six key points that Lord Morrow outlined that are not covered by existing Northern Ireland legislation. Nobody is obliged to obtain information about the number of children and adults with ASD. One service is not obliged to inform another service, and legislation would create such provision. The Minister might be concerned that legislation would be health-specific and centred solely in one Department. However, nobody in the House wants a Bill that centres solely on his Department; it should take in other Departments as well.

Photo of Michael McGimpsey Michael McGimpsey UUP

The Member mentioned action versus legislation. I have heard a lot of talk about legislation; I am saying that I have the legislation that I require right now. Members should let me know if they identify a gap — I will fill that gap. However, right now, I am talking about addressing the matter. When I became a Minister two years ago, that was one of my first actions. Although the Department is finally about to publish its action plan, people such as Kieran McCarthy are calling for legislation, and nothing but legislation.

World autism awareness day is on Thursday. It will help to raise awareness about autistic spectrum disorders. We need all the autism awareness days that we can get; we need to raise autism awareness every day. That is why the ASD action plan places an emphasis on providing awareness training and, where appropriate, more specialist training. Part of the consultation exercise on the ASD strategic action plan asks for ideas on engaging with others and working in partnership in order to promote ASD services.

We have a wealth of ideas and opinions on how to engage with others. The historic underfunding of services for those affected by autism has meant that many people have experienced difficulties. That needs to end.

Autism services need to improve to ensure an improved quality of life for individuals and their families. It is an indicator of the importance attached to autism services by all those involved, myself included, that over £2 million in investment has been secured for autism services. Alongside with that new funding, trusts have been set a new target under the priorities for action for 2009-2010 whereby, by March 2010, no child will wait longer than 13 weeks for assessment following referral, and a further 13 weeks for commencement of specialised treatment. Lord Morrow said that the Minister should take note; it should be clear from the priorities for action — which were published some time ago — that I did take note.

Money will never be the only way to improve services, and services do not have to be resource intensive. We need to identify and share examples of best practice, and take note of what individuals, families and carers have to say about services. Examples of best practice are evident in the voluntary and community sector, where people know how to innovate and develop services using the available resources. That sector also provides an essential resource for families and statutory services. We can always rely on those in the voluntary and community sector to tell it as they see it, rather then telling us what we want to hear.

We need to hear all of the various opinions and take account of the full range of voices in the voluntary and community sector. The need to develop more services to meet the needs of adults who are affected by autism is clear and accepted by all concerned. The need to develop services for people of all ages is outlined in the ASD strategic action plan — it is not simply about children. The ASD regional group, to be established as part of the action plan, will take forward a range of actions intended to raise both the range and level of services for adults — and people of all ages — who are affected by autism.

The regional group will be led by the Health Department and the five trusts, and will comprise representatives of DSD, the Department of Education, DCAL, and the voluntary and community sector. We are preparing our action plan for publication; other Departments can then see what we propose to do, and how we will need to get it done. The plans that those Departments make to develop and improve their services will be discussed through the regional ASD group, and can work alongside the plans of my Department.

Only by close co-operation and collaboration can we help to close all of the gaps and provide the full range of services that are needed. This is not a matter for the Department of Health alone. I am gratified to discover that all other parties support the initiative, support sufferers of ASD, and recognise the need to go forward. As those parties control the other Departments, I am sure that I will have absolutely no problem in getting that co-operation.

Photo of Michael McGimpsey Michael McGimpsey UUP

I have just finished, so the Member will have to shout at me another day.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

Go raibh maith agat, a LeasCheann Comhairle. Before continuing with the winding-up speech, I shall say a few words on behalf of the Committee for Health, Social Services and Public Safety, of which I am the Deputy Chairperson. The Health Committee has taken a key interest in the issue of autism, and has been supportive of efforts to improve services for people with autism.

We pressed the Minister to address the issue, and welcomed the setting up of the independent review of autism services in September 2007. Lord Maginnis, who chaired that review, briefed the Committee when his report was published in July 2008. A draft action plan, to which the Minister has referred, was subsequently published and put out for consultation. The Committee listened to a range of views, and paid a visit to Wales, before making a response to that action plan.

The main issued that was highlighted by the Committee, and about which we have heard several times throughout the debate, was that the draft action plan seeks to address services for people with ASD solely from a health perspective. We need a much more holistic approach. In his evidence to the Committee, Lord Maginnis acknowledged that shortcoming when he told us that the one constraint on our inquiry was that we did not have the authority to step outside the parameters dictated by the Department of Health, Social Services and Public Safety.

Lord Maginnis also felt that other Departments had no desire to co-operate, and unless that is overcome difficulties will emerge in future.

Photo of Dominic Bradley Dominic Bradley Social Democratic and Labour Party 4:15 pm, 31st March 2009

Does the Member agree with me that the present piecemeal provision leads only to the type of wrangling that we have heard today over the Middletown centre? Does she also agree that we need the services of the Department of Education, DEL, DCAL and DSD as well as the Department of Health, Social Services and Public Safety, and that the most effective vehicle for the delivery of that cross-cutting support is autism legislation?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I thank the Member for his intervention, and I agree fully with him. Representatives of Autism NI and the National Autistic Society stressed to the Committee that the needs of people with autism can be met only by cross-departmental action with a legislative imperative.

Photo of Basil McCrea Basil McCrea UUP

Will the Member give way?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I am running out of time. If I have time at the end, I will give way.

When we visited the Welsh Assembly Government we learned that three years ago they adopted a social-care model of services for people of all ages with autism involving not just their Department for Health and Social Services but their Department for Children, Education, Lifelong Learning and Skills and other Departments. A strategic autism action plan for Wales was published in April 2008 and signed off by the Ministers for those aforementioned Departments. They stressed that working in partnership, especially with the voluntary sector, was the key to success in that area. We also witnessed partnerships in action when we visited a number of projects in Wales. There is much that we can learn from how autism is dealt with there.

I welcome the opportunity to bring the Assembly’s attention to the Committee’s main recommendation to the Minister of Health, Social Services and Public Safety. The Committee put forward the view that although autism is primarily a health issue, other Departments, including the Department of Education, the Department for Employment and Learning, the Department for Social Development and the justice system have a crucial role to play. The development of the autism action plan offers an opportunity to broaden the approach to developing comprehensive services for people of all ages with autism. The Committee strongly recommends that the Minister of Health, Social Services and Public Safety should take this issue to the Executive and seek the establishment of a ministerial subgroup to develop a joined-up approach to the issue. We await the publication of the Minister’s response.

Speaking as an MLA and as a member of the Assembly all-party group on autism, I thank everyone who contributed to the debate. The majority of parties in the House have sent a clear message to those who live with autism every day — and to the parents, carers and friends who took the time to come to the steps of Stormont this morning — that we will support them in their cause and for the protection of their rights.

A number of key issues were highlighted during the debate, one of which is that autism does not fit in existing legislation. I want to tell the House what autism is not: it is not a learning, physical or sensory disability; it is not a mental-health issue, a medical condition or a disease. It is a social and communication disability. It can exist alongside any of those other disabilities, but it is not a causal factor. With autism, all the normal rules are suspended.

How can a person teach or live with someone who cannot process or cope with social situations? How do we ensure that people with autism are not excluded? We can start by recognising autism as a social and communication disability. That is a vital step in moving forward. It is only then that we will be able to see adjustments and ensure that protections are put in place.

Photo of Ian McCrea Ian McCrea DUP

Does the Member agree with me that there is a need for specialised social workers who have the understanding and the skills that are required to work with young people and adults with autism?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I could not agree more with the Member.

I am running out of time, and I want to make a comment about the parental lobby, as many parents and carers were on the steps of Stormont this morning. We must put on record our strong support for those parents and thank them for their continued lobbying. Not for the first time, they came here to lobby us because they want no less than the protection of their children’s rights. Since I was elected to the Assembly in 2007, the autism lobby in my constituency of Mid Ulster has been very strong and has been the first at my door. Two women in particular — Ann McIlvenny and Cecilia O’Hagan — have worked tirelessly on autism issues across Mid Ulster and have provided immense support to parents in the area.

Photo of John Dallat John Dallat Social Democratic and Labour Party

I remind the Member that she was allocated 10 minutes in which to speak; she can slow down. [Interruption.]

Photo of Basil McCrea Basil McCrea UUP

Do not tell her to slow down, Mr Deputy Speaker. She said that she would give way to me at the end of her winding-up speech if there is time.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

Thank you, Mr Deputy Speaker — a common criticism of me is that I speak too quickly.

I make it clear to the House that we need to recognise that lack of support and care for parents of children with autism leads to high stress levels among them. Therefore, we need to do all that we can to counteract that and support them.

A number of Members referred to the need to support adults with autism. Again, I welcome the attention that has been brought to that issue today. We also need to focus our attention on adults with autism.

Several Members spoke about early intervention and diagnosis. Ian McCrea referred to the fact that some commentators have said that diagnosis is a label that perhaps prevents inclusion. However, “diagnosis” is not a dirty word — it gives direction to parents in seeking support and signposts services and easily identifiable needs. Early intervention is the key to assisting children with autism. The Keyhole programme of early intervention, which was mentioned earlier, has been proven internationally. Despite that fact, the programme is not provided comprehensively across the North. If it could be applied here, that would ensure that there is a mechanism for all parents to access whatever types of interventions they think appropriate for their children.

The comments made by the UUP about the centre of excellence at Middletown were said, perhaps, to try to deflect attention away from the fact that its members stood up in the House today and said that they will not support the autism lobby for legislation. That is unfortunate. I think that John McCallister commented that the lobby is categorically not needed. I do not know how he has the expertise to make that assumption.

Photo of Basil McCrea Basil McCrea UUP

I wear the same badge; I have the same tie, and I have been involved in the issue from the start. Therefore, I categorically reject the allegation that people are trying to play politics with the issue. Frankly, I find the allegation distasteful. The Minister of Education was challenged about Middletown. Members of the Committee for Education talked about the centre. The Minister of Health, Social Services and Public Safety stood here and said that he does not need legislation, because he has all the legislation he needs. If any Member can point to an area in which something needs to be done but that the Minister does not have the power to address, speak now and the Minister will seek that legislation. That is the challenge. This is not about politics, it is about action.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I am going to move into the reasons why we need autism legislation. I say to the Member that I find it distasteful that his party will not support the autism legislation today.

Much work has been done by the autism lobby to progress the Autism Bill, which will enshrine, in legislation, the rights and entitlements of those in the autistic spectrum. I remind Members that that is not a privilege for autistic children and adults; it is a right. The legislation will place a legal imperative on those responsible to work together to provide services; it will ensure that parents are given official recognition of their child’s disability and it will ensure and establish foundation principles and guidance to establish a cross-cutting strategy. With the best will in the world, the Minister of Health, Social Services and Public Safety — who has taken action, which we welcome — has no control over the other Departments. Therefore, a legal imperative is needed so that all Departments have to work together in order to improve services for people with autism.

In conclusion — I am not going to have time to refer to the Minister’s comments — I commend the Minister of Health, Social Services and Public Safety and the Minister of Education for their work in improving the lives of individuals living with autism. However, the challenge is this: autistic spectrum disorder does not fit into the current system — there remains inequality of provision. Autism is an invisible disability that needs attention and needs addressed now. A number of motions on the issue have been passed unanimously in the House; however, action has been lacking. We need to see action and we need to send a clear message to the parents and carers of those with autism that this is an equality issue and that we are going to see it through. Go raibh maith agat.

Photo of John Dallat John Dallat Social Democratic and Labour Party

I am afraid that the Member’s time really is up now.

Question put and agreed to.


That this Assembly expresses its concern at the high rate of autism and the consequent development challenges to Government and non-Government agencies across health, education and social care; and commends the United Nations designation of 2 April as world autism awareness day and the invitation to all Member States to observe this day annually to raise public awareness of autism.