Autism: “You Need to Know” Campaign
Private Members’ Business
William Hay (DUP)
The Business Committee has agreed to allow up to one hour and 30 minutes for the debate. The proposer of the motion will have 10 minutes in which to propose and 10 minutes in which to make a winding-up speech. All other Members who are called to speak will have five minutes.
I beg to move
That this Assembly views with concern the findings of the Northern Ireland-based research carried out by the National Autistic Society into the mental health of children with autism for the “You Need to Know” campaign; and calls on the Minister of Health, Social Services and Public Safety to take on board the main findings of the research as his Department prepares to implement the Autism Act (NI) 2011.
Go raibh maith agat, a LeasCheann Comhairle Éirím leis an rún a mholadh. I propose the motion on behalf on the Assembly all-party group on autism. I thank the Business Committee for affording us the time to debate this important report, ‘You Need to Know’, published by the National Autistic Society.
It is important to make it absolutely clear at the outset that autism is not a mental health problem. The Autism Act (Northern Ireland) 2011, which amends the Disability Discrimination Act 1995, clarifies autism as a social communication disability and not a mental health condition or learning disability. It is perfectly possible for someone with autism to have good mental health, just as it is for any other child. Unfortunately, far too many children go on to develop mental health problems.
The 2011 Act, when enacted, will address the acknowledged gap in knowledge and expertise across the public sector. The Act includes the requirement for an autism awareness campaign and the development of a regularly monitored and reviewed Northern Ireland Government autistic spectrum disorder (ASD) strategy that crosses all life stages and a number of Departments.
As the ‘You Need to Know’ report points out, there is limited data collection in Northern Ireland regarding ASD and, therefore, there is no Northern Ireland-specific research into the prevalence of mental health problems in children with autism here. The need for the correlation of ASD data across Departments is addressed specifically in the 2011 Act and consequently in the planning of the Northern Ireland Government ASD strategy, which includes a subgroup to progress this particular issue.
Children with autism can be more susceptible to mental health problems because they can be socially isolated. They can struggle to make friends and can be bullied in school. They will often find it difficult to communicate their feelings when they are having problems or feeling low. This can escalate into mental health problems. However, with the right support at the right time, children with autism can have the same emotional well-being as any other children and live happy and fulfilled lives. When the right support is not provided at the right time, the impact on children with autism and their families can be devastating.
The ‘You Need to Know’ report, which, as I said, was commissioned and written by the National Autistic Society, provides a snapshot of mental health problems that children with autism in Northern Ireland are experiencing and seeks to make their voices heard. The parents surveyed reported that their children’s mental health problems were developing at a very early age. Almost nine out of 10 parents stated that their children first experienced these issues before the age of 10, and over half before the age of five. When parents were asked about what things negatively affected their children’s mental health, the most common answers related to: not getting the right support for the child’s autism, 58%; the lack of social support, 55%; and non-mental health professionals, including GPs, social workers and schools, not having an adequate understanding of autism, which was at 48%, as was a lack of appropriate educational provision.
Nine out of 10 parents said that the mental health problems that their children faced had a negative impact on the whole family. The report also revealed that there can be a financial impact, with a significant portion of parents having to reduce their working hours to deal with these issues.
Unfortunately, when children with autism and their families have to access specialist children and adolescent mental health services (CAMHS), they encounter many problems. Of the parents surveyed, over half — around 57% — found it difficult to get a first referral to CAMHS for their child, and around 55% waited three months for a first appointment following referral. Some waited up to a year. Two thirds said that there had been times of crisis with their child’s mental health when they needed support, but half of those parents were unable to access that support.
In respect of these issues, the National Autistic Society’s report ‘You Need to Know’ recommends that Health and Social Care trusts develop specific pathways for mental health support for children with autism.
As you know, Mr speaker is in charge of proceedings of the House of Commons in..." class="glossary">Deputy Speaker, autism is a complex disability. When mental health problems arise in children with autism, they are more difficult to recognise, harder to evaluate and even harder to treat. Professionals need a good working knowledge of autism in order to do these things, or else the interventions they provide can fail to help, and in some cases can even be harmful.
Communicating with a child with autism requires flexibility, patience and skill. Children with autism are more likely to take longer than others to trust a professional and to communicate openly. Of the parents surveyed by the NAS, half of them felt that the CAMHS staff had a good understanding of autism, but fewer than half thought that CAMHS staff knew how to communicate with their child. On that issue, the NAS report recommends that all staff working within CAMHS at tiers 2, 3 and 4 must have basic training in autism and access to a specialist’s report. All CAMHS staff need to have a broad understanding of autism to ensure that children receive appropriate support. However, providing mental health support to children with autism is indeed a very specialist skill. Without that specialist level of knowledge, it can be difficult to treat those children. It is, therefore, vital to have autism specialists in CAMHS who can help other professionals develop their skills. The report recommends that the key autism specialists are identified in each CAMHS service, play a lead role in developing staff training and act as a source of specialist advice. As outlined earlier, there is limited research into the prevalence of mental health problems in children with autism in Northern Ireland, but, as I stated earlier, I believe that that will be addressed through the Minister’s work on the Autism Act.
I thank all the members of the all-party Assembly group on autism and the other Members of the House who have stayed behind on this hot day to participate in the debate. I welcome the Minister and look forward to hearing his response to the recommendations and hearing how, through the autism strategy, many of those issues will be dealt with. Go raibh míle maith agat, a LeasCheann Comhairle.
Gordon Dunne (DUP)
I welcome the opportunity to speak on the important issue of autism. Unfortunately, autism is an ever-increasing problem across Northern Ireland, and it affects a growing number of children and young people in our communities. I welcome the progress made to date in dealing with autism, and I pay tribute to the National Autistic Society Northern Ireland, Autism Northern Ireland and other important groups and organisations for their ongoing work on autism. I also commend the Health Minister for taking a hands-on, pro-active approach to improving and developing autism services in Northern Ireland.
I feel that the public does not know enough about autism. It is a life-long development disability that affects the way in which a person communicates with and relates to other people. As autism is a spectrum disorder that can affect different people in different ways, we need to have a different system in place that can deal with specific, individual needs. Increasing public awareness of autism could be a very valuable tool in promoting the needs of those with autism and helping to encourage understanding.
As with many areas of healthcare, early intervention and detection is vital to be able to support, minimise and treat autism. Despite the good work done to date, there is still room for improvement. That was re-emphasised to me recently when I was contacted by a number of parents of children with autism from across my constituency who still have concerns about the current system and feel that much has yet to be done to make adequate support available.
Given that 17,000 people are affected by autism in Northern Ireland and 200 people are diagnosed with the condition each year, it is important that we continue to do all that we can to develop autism support. If the right infrastructure and support is in place for young autistic children, it helps reduce long-term mental health problems.
I welcome the work to date on the autism strategy. The project board has been established, and the voluntary sector is involved. I welcome the Minister’s assurance that he will continue to work with the voluntary sector in bringing forward the strategy. The voluntary sector is often at the front line and has a significant role to play in the development of an autism strategy. The strategy must provide a clear pathway to set about addressing the needs of people with autistic spectrum disorder as well as the needs of parents and carers and to identify what steps can be taken to promote awareness of autism.
Education has a vital role to play in helping to tackle autism. Many parents who contacted me recently expressed specific concern about the lack of a support infrastructure in schools. Parents feel that there is no adequate support mechanism in place to support autistic children. More should be done to promote specific training for teachers and classroom assistants in schools. An ethos of understanding would help to reassure children who suffer from autism while helping those who have to look after, teach and support children and young people with autism.
This is a cross-departmental issue. All Departments and key stakeholders must be fully involved in the way forward. The voices of those with autism must be heard as we try to tackle the ever-growing problem of autism among our young people. I support the motion.
Sean Lynch (Sinn Féin)
Go raibh maith agat, a LeasCheann Comhairle. I support the motion and welcome the opportunity to speak on it. At the launch of the “You Need to Know” campaign, Mark Lever, who is the CEO of the National Autistic Society, said: “Too many children with autism are developing preventable mental health problems and find themselves up against a broken system that doesn’t understand them or their needs. All too often they receive inappropriate, ineffectual and sometimes harmful treatments.”
That was in 2010. The ‘You Need to Know’ report, which examined the issues of children with autism and mental health problems, also highlights that those young people are let down by the very services that are supposed to be in place to help them.
As Dominic Bradley highlighted, autism is a lifelong developmental disability. Over 70% of children with autism also develop mental health problems, such as anxiety and obsessive compulsive disorders. Coupled with autism, those disorders are harder to recognise and diagnose. Often those mental health problems are dismissed as a side effect of autism. The ‘You Need to Know’ report states that more needs to be done to stop those problems from occurring, and there needs to be better support when they do occur.
Over the weekend, I met a friend who has a son with autism. Only last week, she had to take three days off work to care for him, as he had developed acute anxiety after spending the first period of his life away from his parents. Talking to that parent brought it to my attention that when the right support is not available, the impact on children with autism and their families can be devastating.
As part of the ‘You Need to Know’ report, parents reported that their children were developing mental health problems, as Dominic Bradley has already said. Some 90% develop problems before the age of 10, and 50% develop problems before the age of four. When parents were asked what things negatively affected their child’s mental health, their answers were revealing. Some 60% were not getting the right support, as my friend confirmed; almost 50% of professionals lack understanding of autism; and 50% of parents stated that there was a lack of appropriate educational provision.
I understand that the last point is not the responsibility of the Minister in the House, but he and the Minister of Education should have a much more joined-up approach on the issue. In January, John O’Dowd said that his Department had a long way to go, and he gave strong indications of the major changes that he had in mind. It is my hope that his plans of reform are nearing conclusion. However, the motion calls on the Health Minister, who is with us today, to take on board the main findings of the research as his Department prepares to implement the Autism Act.
The Minister cannot ignore those findings. The Health and Social Care Trust needs to develop integrated care strategies for mental health support for children with autism. All CAMHS staff need to have an understanding of autism to ensure that children receive early intervention and appropriate support. That demands the development of staff training, so that they can help other professionals to develop their skills.
As my friend said, her son can achieve his full potential by reducing the impact of mental health and emotional problems through the improved provision of care services. Those children deserve an equal and fair opportunity in life, along with all children in our society.
Ross Hussey (UUP)
My first knowledge of autism was gained by my membership of the Western Health and Social Services Council, to which I was appointed on my election to Omagh District Council in 2005. I had absolutely no knowledge of autism, and it was a presentation to the health council by a group of parents that pricked my conscience and made me want to know a little bit more. For that reason, I sat on the health council’s autism group, and it is for that reason that I sit on the all-party Assembly group on autism.
While preparing for the debate, I mentioned on Facebook that I would speak during the debate. I also learned that my cousin, who works in a special school, is a specialist in working with children with autism. She said that she had read about the ‘You Need to Know’ campaign and that it is very worthy of support, as society needs to be aware of the needs of people with autism and how to deal with those needs. She said that the findings are typical nationwide, and that, of course, change needs to come from the top down. Government need to recognise those needs and the financial and practical implications that arise with the development of relevant resources. That, in turn, will highlight the needs in departments and organisations, which will, in turn, implement the legislation that can only benefit the families involved. She said that, as she has been out of teaching, she has missed out on recent developments, but the topic is still close to her heart.
Other comments indicate that the public fully supports the delivery of a service that recognises those with special needs and takes every step it can to support parents, grandparents, teachers and, most importantly, the children who are affected on a daily basis with autism.
I have a report sitting on my desk in Omagh that was given to me by a grandparent, in relation to his granddaughter. I have met the child on several occasions. In fact, before I was elected to the House, they were visiting the Building when I was with a group lobbying for support, and the wee girl shouted out, “Granda, there’s your friend”. She is a lovely child who is much loved by her parents, grandparents and siblings, but she suffers from autism. Her parents and grandparents have fought hard to ensure that she receives all the support that she should from the state.
I received a comment from a friend called Shane, who said, “It’s often up to parents of ASD kids to push education boards, schools, and youth organisations to identify the needs and resource the management so that kids can develop fully.” However, what if the parents themselves are ASD? Adults are often not aware that they may have the syndrome. In this, the early and initial stages of changing the way that we all treat and manage ASD, I feel that it is very important that schools take a special interest to ensure that the kids identified get every advantage. Why should it only be the pushy parents?
The motion is quite specific and calls on the Assembly to note:
“with concern the findings of the Northern Ireland-based research carried out by the National Autism Society into the mental health of children with autism for the ‘You Need to Know’ campaign”.
The conclusions in the report are damming to say the least. The report clearly states that the Child and Adolescent Mental Health Service is underfunded and overstretched. Anyone who has attempted to support a parent who is having a child assessed for autism will certainly support the comment that CAMHS is overstretched. The sad reality is that, without the push from parents in many cases, the assessment would take a lot longer. The factual comment that children with autism and their families and carers struggle to access the right support, often when it is most needed, should make us all hang our heads in shame. The fact that thousands of children with autism will needlessly face a future of mental health problems must bring us all to a sense of shock and horror. We can change the lives of those children if we work with the National Autistic Society to provide a health and social care service that knows how to provide the relevant support. We can also improve the lives of the many parents and siblings out there who are at their wits’ end trying to cope on their own.
Some people do not like reading books to the end to get the solution to a problem or to find out whodunnit. In this instance, you do not have to read the entire report; you have only to go to the conclusions, which are pretty straightforward.
I have already mentioned the need for an improved child and adolescent mental health service. In previous questions to the Health Minister, I have sought a closer relationship between the Department of Education and the Health Department in that area. The necessity for protocols has, I feel, already been accepted by all Members, and there is no doubt that actions will speak louder than words. Access to specialist advice for staff working in CAMHS seems to be a reasonable expectation, and the need for an individual to play a lead role in training is clearly a logical step. Teachers, particularly primary-school teachers, are facing demands on their time day and daily. However, as autism becomes more apparent —
Ross Hussey (UUP)
— and understood, we need to develop an in-depth training course that allows teachers and classroom assistants to create an ethos of understanding that will benefit children with autism. I support the motion.
Kieran McCarthy (Alliance)
On behalf of the Alliance Party, I welcome the opportunity to support the proposal and ask the Minister of Health, Social Services and Public Safety to implement the changes and improvements contained in the ‘You Need to Know’ report so as to make life better, in mental health terms, for children and young people in Northern Ireland with autism.
I pay tribute to everyone involved in the National Autistic Society Northern Ireland for the work they have done on behalf of everyone with autism, and also their parents, carers, teachers and the many other people who have contributed to the research and findings contained in the ‘You Need to Know’ report. The motion advises the Minister and his Department to take on board all available information as they progress to implement the Autism Act (NI) 2011, which came into being last year. I also thank the officers, staff, parents, carers and many more people who supported Autism NI as it steered that vital piece of legislation through the Assembly over two years.
I must say that I am extremely proud to have been a member of the all-party group on autism, under the excellent chairmanship of colleague Dominic Bradley, when despite some opposition from within the Health Department itself, the 2011 Act was passed and got Royal Assent one year ago in May 2011. It is now our opportunity to see dramatic improvements made in this field for the benefit of everyone with autism. The Assembly has spoken. The Minister is fully aware of what has to be done now. The Department must not delay or drag its heels. Action is required. We as ordinary Assembly Members will not tolerate any further blockages to the Act’s fullest implementation.
The ‘You Need to Know’ report was launched last June, and the research carried out clearly said that mental health problems such as anxiety, obsessive compulsive disorder and depression can be avoided if the proper service is provided to children with autism at an early stage. So, with the right support at the right time, autistic youngsters can have the same well-being as other children and a happy and contented childhood. It is up to us, the Minister and the Department to deliver.
It is fair to say that the Department of Education also has a vital role to play in ensuring that proper provision is made in schools. The report states that 48% of the parents surveyed felt that the lack of appropriate educational opportunities had a bad effect on their child’s mental health. My experience as an MLA — and, indeed, I listened to other MLAs say this this afternoon — is that parents of children on the autistic spectrum are totally exhausted and exasperated when they seek help or even advice from the statutory authorities. They do not know who to go to to seek professional help, and when they do go, the time they have to wait for help is horrendous, thus building up anger, frustration and almost a sense of hopelessness. The 2011 Act, I hope, is a mechanism that will prevent such anxiety.
Why should people who have enough problems have to suffer the indignity of not knowing where to go or where to seek help? They deserve help, and, hopefully, they will get whatever is required at the time.
The Department must listen, learn and act when it is dealing with autism. It is the least it can do to assist the children and their parents. The Department has complete access to the contents of the ‘You Need to Know’ report. It can see the fantastic work carried out by a voluntary organisation and supported throughout the community. The Department will also have knowledge of the contents of the Bamford report and its recommendation to support those with learning disabilities and mental health issues. One is tempted to ask why there is such a delay in its full implementation.
In conclusion, the ‘You Need to Know’ report has to be the building block for the Department to reach out and ensure that the mental health of those children with autism —
Pam Lewis (DUP)
I welcome and support the motion. I want to begin by praising the all-party group on autism for the work that it has done to date, especially in securing the passing of the Autism Act (Northern Ireland) 2011, which amended the Disability Discrimination Act 1995 in order to include provision for those on the autistic spectrum.
Autism is characterised by impaired social interaction and communication, coupled with restricted and repetitive behaviour. Every person with autism will have different, but not dissimilar, symptoms. I also welcome the You Need to Know campaign, launched by the National Autistic Society, and its findings, as set out in the comprehensive report detailing the experiences of users.
Mental illness is prevalent in Northern Ireland, and, as the campaign highlights, it affects 71% of those with autism. For those with autism and their carers, that is yet another set of circumstances to manage and deal with, coupled with those symptoms associated with autism. Autism is not a mental illness in itself, but sufferers can also suffer from anxiety disorder, depression or obsessive compulsive disorder, for example. That can therefore have an overall negative impact on their health and limit progress in other areas of their condition. The campaign seeks to highlight the message that children with autism can have good mental health and the name of the campaign, You Need to Know, obviously aims it at many stakeholders, including government.
Autism has only recently secured the attention it requires, and many sufferers live here in Northern Ireland. For every sufferer there is also at least one carer, likely to be a parent or close family member. The campaign places a focus on services and inspires government to make changes and improvement to services, such as the child and adolescent mental health services, to provide support for autistic children who also suffer from mental illness.
The Autism Act not only amends the Disability Discrimination Act but ensures that the Department of Health, Social Services and Public Safety produces an autism strategy that includes how the needs of those with autism are to be addressed, as well as raising awareness of autism in society, including the workplace. The Bamford review, published a number of years ago, set out a strategic direction for children’s mental health services to ensure that they met the standards required in order to tackle mental health issues faced by children. The review puts a focus on those with special needs, including those with autism or learning disability. The review and recommendations are obviously linked to the issues pointed out by the You Need to Know campaign, and tie in with the change advocated by the National Autistic Society.
In a review completed in February 2011, the Regulation and Quality Improvement Authority reported that, although progress has been made in the area, more needs to be done. I hope that further improvements will be forthcoming in the delivery of service so that the full scope of the Autism Act might be realised and that those most in need will truly benefit.
Mickey Brady (Sinn Féin)
Go raibh maith agat, a LeasCheann Comhairle. I, too, support the motion, and I would also like to thank the all-party group on autism for the work that it did on bringing the Autism Act to fruition. I was a member of the Health Committee in the previous mandate, and I am very aware of the hard work that that Committee did in bringing the Act through. I quote Paula Bradley at this stage, because, at this stage, the debate is all the same and everything else has been said. I just want to make some comments. The three reports by the National Autistic Society were mentioned.
Individuals with autism have difficulty with social interaction and communication, including using and understanding verbal and non-verbal language. They have difficulty with social imagination, the ability to understand and predict other people’s intentions or behaviours and the ability to imagine situations outside their own routine.
The motion deals with children, but one concern across the board is about what is happening with welfare reform. Adults with autism are being migrated from incapacity benefit to employment and support allowance, and there are concerns about how those people are going to cope with the interviews and tick-box exercise carried out as part of the much-maligned and discredited work capability assessment. The problems that people have carry on into adulthood; I think that is a point worth making.
As has been stated, autism is not a mental health problem, but too many children go on to develop such problems. Again, it has been stated that there is no specific research into the prevalence of mental health problems for children here in the North, but research in England shows that seven in 10 children with autism have a co-occurring mental health problem such as an anxiety disorder, obsessive-compulsive disorder or depression. A lot more needs to be done to stop these problems occurring, and better support needs to be available when they occur.
Children with autism are often socially isolated because of the condition and are thus more susceptible to mental health problems, but if the right support is available, their emotional well-being can be just as good as that of other children.
I thank the Member for giving way. Does he agree that the Health Minister should consider developing ways to make child and adolescent mental health services more accessible to children with autism, given the recommendation of the “You Need to Know” campaign that staff in tiers 2, 3 and 4 should be given the basic training in autism, and that there should be key individuals within CAMHS who are autism specialists? Does he agree that such a change would have a hugely positive impact on the lives of children with autism and their families?
Mickey Brady (Sinn Féin)
I thank the Member for her intervention and absolutely agree with what she said. The people who deal with the children in this situation need to be trained to a level of understanding and need to be able to cope with the complex problems. The complexity of autism was mentioned. People who are going to provide a support mechanism need to be trained to the highest degree.
The ‘You Need to Know’ report outlines some of the mental health problems that children here experience. Parents who were surveyed reported that children’s mental health problems were developing at a very early age in some cases. When parents were asked what things negatively affected their children’s mental health, examples given included not getting the right support for the child’s autism; lack of social support; non-mental-health professionals, including GPs, social workers, schools, etc not having enough understanding of autism; and a lack of appropriate educational provision.
It is accepted that education plays a vitally important role in the mental health of children with autism. My colleague Seán Lynch mentioned the need for the Education and Health Departments to be collaborative in their approach to dealing with this particular problem. A supportive education setting working in partnership with mental health services can be crucial in maintaining emotional well-being and preventing mental health problems.
The Autistic Society recommends more training for education professionals such as teachers and classroom assistants. Health and social care trusts need to develop specific pathways, as has been mentioned, for mental health support for children with autism, and all staff working within care and mental health services need to have basic training in autism — again, that was mentioned — and have access to specialist support. Also, key autism specialists should be identified in each care and mental health service and act as a source of specialist advice.
Commissioners in each trust area need to know how many children with autism live in each of those areas and know what their mental health needs are. It is essential that the trusts acquire data on the mental health needs of children with autism in their area and that a work stream is identified for the provision of mental health services for children with autism and their families. Unless all that is incorporated into the implementation of the Autism Act, it simply will not be effective, and the hard work done by the all-party group will not be recognised.
Paula Bradley (DUP)
I welcome the opportunity to speak on such an important topic. Today, in our society, mental health still has a number of negative associations and a lot of stigma attached to it. In general, people are still reluctant to seek help for mental ill health. Every one of us has mental health, the well-being of which can fluctuate at any time for a number of factors. For many on the autistic spectrum, the ability to seek help and support may be additionally hindered by lack of communication skills or their experiences within the health service.
NAS research makes clear that people on the spectrum have a high incidence of mental health issues. Estimates and research place it at about 70% of people on the spectrum having some mental health problems. As has already been stated, those can include anxiety, ADHD and OCD. For too many people, those conditions are dismissed merely as an unfortunate side effect of autism. Autism itself is not a mental health problem, but it can, in cases, go together with the aforementioned conditions. Forty percent of people on the spectrum will have two or more mental health issues. When we consider the unique situation of Northern Ireland, with a higher level of mental health problems in the general population due to the legacy of the conflict and the effects of living in social deprivation, it is clear that mental health in ASD individuals needs to be addressed effectively, ensuring that they get the right support when they need it.
In passing the Autism Act, the Assembly did go some way to helping families and individuals living with ASD get access to help and support. There is no doubt that defining ASD as a disability has meant that awareness of the condition has risen somewhat. However, much more is still to be done. Sixty-five percent of families living with ASD felt that lack of support had negatively impacted on their child’s mental health. Families also reported that this lack of support and understanding has impacted on the family’s mental health.
People with ASD can be of average or above average IQ. This group in particular will have a heightened risk of mental health problems, especially anxiety or depression. Treating people with complex needs such as ASD needs an understanding of what the condition is and how different agencies can work. There needs to be more understanding in our schools, especially the mainstream sector, where a lot of ASD children are educated. Lack of understanding in the general population can make these mental health problems worse, as was the sad case in Suffolk, when an individual with ASD committed suicide after being bullied. Recently, we had the case of a child with Asperger’s syndrome being attacked in a school in Carrickfergus. We must ensure that those stories are the exception and not the norm. Sadly, however, research has shown that children with ASD are more likely to be bullied, which can, in turn, affect their mental health and self-image. The work of CAMHS has endeavoured to address mental health in all our vulnerable young people. It is clear that there needs to be more guidance on what each of the different stages is and how people can access those services.
It is for those reasons that I support the motion that mental health in ASD individuals needs to be considered when implementing the Autism Act (NI) 2011.
Joanne Dobson (UUP)
I welcome the opportunity to speak on the important issue of autism, the first time I have had the opportunity to do so since being elected last year. I pay tribute to the National Autistic Society Northern Ireland, which produced the ‘You Need to Know’ report as well as the more recent ‘A* for Autism’. Having that research carried out and those reports published adds greatly to the debate on recognising the needs of people with autism, their families and their carers.
Through relatives and constituents whose families have been directly affected by autism, I know that some people struggling with this disability can find the world a very puzzling and frightening place. Support at an early age can make such a positive difference. When a child receives dedicated help and guidance, so begins the process of lifelong care and assistance, which helps people to communicate better and to relate to people around them, thus improving their everyday social interaction.
That is why the important issue of young people with autism or Asperger’s syndrome and mental health has been an area of much debate. However, that debate has frequently been based on little or no information or evidence. Now, however, it has been proven that young people with autism are particularly vulnerable to mental health problems. The “You Need to Know” report has clearly demonstrated that.
The effects of autism, which is a lifelong developmental disability, are well known, including the fact that it affects everyone in slightly different ways. Difficulties with social interaction, communication and empathy can all have a fundamental impact on a child’s early years and, inevitably, will affect how that child sees the world as they grow up. The link between autism and the challenges of mental health are clear. Although my party had well-known concerns about aspects of the Autism Bill, it supported its passage at the end of the previous mandate. We firmly believe that the Assembly should become an advocate and promoter of better services for autism in Northern Ireland.
Unfortunately, for too long, statutory provision was not at the level that it should have been. Despite the clear benefits of early support, more than half of children with autism in Northern Ireland are still waiting in excess of a year for appropriate educational support. I was shocked by the publication of research from the National Autistic Society Northern Ireland that revealed that almost one in three parents of autistic children feels that their child’s level of education is not adequate. In addition, the “You Need to Know” report revealed that 48% of parents felt that a lack of appropriate educational provision had an impact on their child’s mental health. In my opinion, that is wholly unacceptable, and the Department of Education must identify the shortcomings immediately and work constructively with parents to deliver improved services and to restore the confidence that is so badly needed and so clearly demonstrated in the research.
Bringing service provision for people on the autism spectrum up to standard will be no easy task. It will take immense foresight and dedication, first, from Ministers and officials across several Departments; secondly, from the parents, who want to see the best education from their child; and thirdly, from teachers, who know the problems and now want to be involved in developing solutions. The Department of Health, Social Services and Public Safety is taking the lead in the development and implementation of an all-encompassing strategy to improve services for those on the autism spectrum. However, the Ulster Unionist Party still believes that, to tackle issues such as the difficulties of mental health, a cross-departmental approach between the Health Department and the Department of Education is necessary to identify principles and standards of educational provision for children with autism. Again, it is about Departments and Ministers breaking out of their silo mentalities.
At a time when we are debating reforms to the special educational needs system, we must consider issues such as that that we are discussing today. Realising the challenges that people with autism face should be a priority for every Member. The Autism Bill was passed last year, but unless there is a genuine change in approach, the problems may never be truly tackled.
Ian McCrea (DUP)
I welcome the opportunity to speak in the debate. I commend the Members whose names are on the Order Paper for presenting the motion to the House. Sadly, we are once again speaking on this issue. Nonetheless, it is a very important matter. I think that the House has given it, and will continue to give it, its utmost attention and the importance that it deserves.
I welcome the Ulster Unionist Party’s conversion to supporting the Autism Bill. It was a different mandate then, and we learn from our mistakes.
Ian McCrea (DUP)
I am not blaming either of you two, I have to say. The previous Minister was certainly not that supportive of the Autism Bill. Indeed, he did not turn up to respond to some of the debates. As I said, that was in a previous mandate, and we can move on from that. We can truly say, on this occasion, that we have full all-party support for the motion.
I want to take the opportunity to commend the Minister on the work that he has done on this since taking up office, and some colleagues and I have met him on a number of occasions to push the issue. He has been very willing to work with the all-party group to try to ensure that autism gets the support and attention that it deserves. As others have mentioned, this is not just a health issue, and the Health Minister cannot deal with it alone. He needs the support of the other Ministers, and the fact that the Bill is now in place forces all Departments to work together to try to deliver something that is better for everyone involved in autism.
I try my best to keep abreast of the most of the documentation that comes in on autism, and, when reading one of the reports, ‘A* for Autism’, I noticed that one of the headings is about the consequences of getting diagnosis wrong. That is an important part of the debate. It can sometimes, sadly, be well into adulthood for many people before it is realised that they have autism, and it is important that we do what we can to ensure that anyone who comes forward is properly diagnosed, whether it is a young person or an old person.
As others have said, autism is not a mental health problem, but the effects of not getting it early enough can have a detrimental impact on the education process and, as it says in the document, social and communication skills and behaviour as well as mental and physical well-being if the diagnosis is wrong. There is an onus on society to educate itself to understand autism and to understand how people react. I have spoken to many parents whose children have autism, and they have been in difficult circumstances. For example, they could be out at a restaurant and a child does something that it normally does and people find it offensive. That is understandable, but, nonetheless, as a society, we need to make ourselves better equipped to understand those issues.
Edwin Poots (DUP)
I am grateful to members for bringing this motion to the Assembly and for providing me with an opportunity to outline the work that is being done on autism in Health and Social Care and the plans that are in place to develop a cross-departmental autism strategy.
I understand the difficulties in identifying, and perhaps for the public in understanding, the difference between those traits that relate to autism and those that relate to mental ill health. It is important to recognise that people who are on the autistic spectrum may have neither a learning disability nor a mental illness, for autism is neither of those things. Conversely, people with autism may also have a coexisting learning disability or mental health problem; the one does not preclude the other.
A proper and clear understanding among professionals in the health and social care and education sectors is vital in early identification and treatment of mental ill health. Indeed, it is vital that, in wider society, autism is better understood and that, in areas such as employment and further education, those with autism can make a positive contribution.
The report by NAS, entitled ‘You Need to Know’, very clearly identifies these issues and makes robust recommendations for health and social care and for education. I met NAS representatives in October 2011 to hear their views and to get a better appreciation of their report and recommendations. At the time I agreed that the recommendations had considerable merit and that we would look at how best we could deliver them through the regional ASD network and the new autism strategy.
Members will be aware that significant improvements in autism services, particularly for children, have been made over the past three years since the ASD action plan was published in 2009. For example, waiting times for assessment and diagnosis for children have dropped dramatically, down from more than 12 months to 13 weeks across all health and social care trusts. The number of front line specialist ASD practitioners has doubled from around 40 in 2008-09 to 80 in 2011. Furthermore, we now have ASD co-ordinators in place in all five HSC trusts and a regional co-ordinator, who together are taking forward a programme to improve ASD services in each trust.
Assessment and diagnosis are only the start of the journey for those with autism. More significant will be the identification and provision of interventions and services to meet their needs throughout their lives. Awareness and treatment of other conditions is also a vital element, and that was the reason behind the development of ‘Six Steps of Autism Care’, which was published in October 2011.
The guiding principle of ‘Six Steps of Autism Care’ is the promotion of a care pathway where the child or young person and their family are central to the process. The document provides an overview of the journey from the diagnosis of ASD through to ongoing assessment and onto interventions and services. It is an invaluable tool for primary care practitioners, health and education professionals, parents, carers and specialists alike. Importantly, it will bring consistency across Northern Ireland. You can expect the same access to assessment, diagnosis and interventions no matter where you live.
Step 2 sets out the requirement to deal with autism assessments through multidisciplinary teams, including child and adolescent mental health services. In fact, ‘Six Steps of Autism Care’ includes a specific regional protocol that sets out the arrangements for joint working between ASD services and specialist CAMHS when a child or a young person has a co-occurring mental health need or where these concerns exist. I fully acknowledge that we still have some way to go until this protocol is fully implemented across all trusts. In some trusts there are resource issues and there is a need to reconfigure teams. However, all the trusts have indicated that they are committed to full implementation of the protocol, and parents and families should begin to see the benefits over the coming months.
Members will know that the Autism Act, which came into force in August 2011, requires my Department to lead on the development of a cross-departmental strategy that sets out how the needs of those with autism and their families will be met throughout their lives. The strategy is to be published in May 2013 after full public consultation and the appropriate approvals by the Executive. Significant work has already been completed in the development of the strategy.
A project board has been established, with representation from all Departments, some key voluntary sector organisations including NAS, the Health and Social Care Board and trusts, and those affected by autism. The project board has completed an initial consultation exercise through a series of engagement events across Northern Ireland to take views and identify priorities to be taken forward in the strategy. The engagement events were facilitated by the voluntary sector with active participation from the relevant Departments and agencies. Officials advise that this has been a very worthwhile exercise, providing us with a wealth of material to inform the strategy.
In addition, recognising that not all of those in the autism community can participate in this type of engagement event, my Department made available an online questionnaire and has received a significant and positive response. Officials are now in the process of evaluating the feedback received during pre-consultation. We anticipate that a draft document for consultation will be developed by the end of the summer, and I will bring it to the Executive for approval before it is launched for public consultation.
Although the Act does not require it, our intention is to also issue an action plan setting out in the short, medium and long term the specific actions that Departments and agencies will take to address disadvantages being felt by those with autism.
Of course, that means that the strategy and the action plan must acknowledge the most recent research and information available, and reports such as ‘You Need to Know’ are key components of that evidence base. It is not only important to take account of research in developing the strategy; we must continually examine best practice in how we develop and deliver our services.
The Autism Act (Northern Ireland) 2011 also requires my Department to provide data on the prevalence of autism, in order to publish and update the strategy and to enable the Northern Ireland Departments to implement it effectively. A prevalence of autism subgroup has been established to take that work forward, and it is in the process of establishing a base rate for children with autism in the HSC trusts. Also, as part of the planned process to modernise the child health system, improvements to enable better recording and monitoring of ASD in each HSC trust are under way. That will also have the capacity to identify co-occurring conditions, including mental health conditions.
In parallel to establishing that group, I have appointed a voluntary sector organisation to chair a research subcommittee of the autism project board. It will be a key role of that subcommittee to bring the most up-to-date research and evidence to the attention of service providers across all Departments and agencies, with the potential to report on whether such evidence is being implemented effectively.
I trust that that gives Members a good idea of the range of actions we are already taking or plan to take to improve services for those with autism. A number of Members raised specific points. Some of those have been covered, but I will go through them briefly. Mr Bradley raised the issue of limited data on ADHD. I will suggest to the prevalence subgroup that it looks at that area to see what additional data might be gathered. Mr Brady referred to data on co-occurring conditions. That issue is being addressed through the prevalence subgroup of the project board, and the review of the child health system will address that specific need.
Gordon Dunne raised the issue of education support structures in schools and training for teachers. The education sector is playing a key role in the development of the autism strategy and the action plan. My officials will work with Department of Education officials to ensure that a joined-up approach is advanced.
Seán Lynch questioned the support for families. The integrated care pathways that support families and children to get the right help at the right time are key elements of the protocol for co-operation between ASD services and specialist CAMHS.
Ross Hussey pointed out that CAMHS is overstretched and that parents with autistic children feel that they are not getting full support. The aim of the regional protocol, as identified in ‘Six Steps of Autism Care’, is to improve that situation by placing the child and their family at the centre of the process, where ASD services and specialist CAMHS work together to assist the family through the care pathway. Mr McCarthy raised the issue of waiting lists, and, as I indicated, waiting lists have been reduced from one year to 13 weeks. It is our intention that that would also apply to CAMHS.
Pam Brown brought up the Bamford recommendations. The regional ASD action plan and the Bamford report ‘Comprehensive CAMHS’emphasised the need for ASD specialist CAMHS to be family- and child-centred. I am pleased at the progress that has been made in that direction through the regional protocol. There is still much to do, and we hope that that will be highlighted in the autism strategy and the action plan.
Paula Bradley raised the issues of adults’ reluctance to seek help and the bullying of ASD sufferers. The awareness aspect of the strategy should highlight those issues and others, with the aim of reducing stigma and encouraging people to seek help. Of course, early intervention in the development of mental illness is crucial to avoid a worsening of the condition. Awareness among the public at large should also help with the identification and reduction of bullying.
I once again thank the House for bringing these matters to our attention. I hope that you have received some assurance that improvements have been made and that we will continue to make improvements that are based on the most up-to-date research and evidence that is available to us.
Jonathan Craig (DUP)
I support the motion tabled by the all-party group on autism. It is important that we as an Assembly recognise that many children in Northern Ireland have autism. It is defined as a lifelong development disability, and many people across the Province are either directly or indirectly affected by it. It is a spectrum condition, which means that, while all people with autism share three main areas of difficulty — social interaction, social communication and social imagination — the condition will affect each person in a different way.
I found myself fully agreeing with many Members around the House today. It can lead to mental issues, but autism itself is not a mental condition. All of us have learnt that over the past four to five years, with the whole issue of the 2011 Act. Indeed, recent research carried out by the National Autistic Society Northern Ireland through the You Need to Know campaign has been well documented and sends out a clear message from parents and health professionals on how best we as legislators can effect positive change to children with autism in Northern Ireland.
The implementation of the 2011 Act is a means to address many of the concerning findings through this research to better implement a positive way forward for those with autism. Many recommendations are made throughout the research document, and many important points can be noted from the qualitative and quantitative analysis of parents, which can be considered in the implementation of the legislation. Autism, while not existing as an individual mental health problem, must be addressed. As many colleagues pointed out in the debate, the research in England suggests that seven out of 10 children with autism also have a co-existing mental health problem.
Child and adolescent mental health services in Northern Ireland have recognised the need for a stepped approach that places the main focus on the person, according to their specific needs. Through the 2006 Bamford review, a clear case was presented for collaborative work to be conducted across Departments to treat the broad issue of mental health among children in all-inclusive way to support those with other mental health problems such as anxiety disorder and obsessive compulsive disorder. Isolation from social context can encourage such disorders among children with autism, and that is a problem that should be addressed more collectively.
The importance of a joined-up approach with collaboration between the Health Department, health trusts, the Department of Education and schools can provide adequate support for children with autism and help them to live a happy and rewarding life where they can have the same well-being as any other child. The role that education plays in the acknowledgement of the needs and professional help that can be administered to those on the autistic spectrum cannot be underestimated. The report draws attention to the fact that 48% of parents surveyed believe that their child was adversely affected by the lack of appropriate educational provision. This outcome is not acceptable, and it is important that this issue be dealt with to increase confidence in the education service that is provided to those with autistic needs.
School experiences and settings are important mechanisms in meeting the needs of children with autism. The report says that giving teachers and schools greater training will result in an easier and more worthwhile experience for an autistic child. Expertise should be provided to families.
They should be well informed of the services provided by CAMHS. That is important for relatives who must come to terms with having a child who has autism. It may be necessary to introduce a range of measures to support families who have a child on the autistic spectrum.
Living with someone with autism can require a complete lifestyle change. Indeed, that is something that I witnessed, as it was my childminder who got me involved in the whole autism issue. I can vouch for the fact that, when you have a child with autism, your life is turned upside down. It is not like a normal child when it grows up. In many respects, you can allow a young teenager to get on with his own life, but autistic children will never be in a position where they are fully independent. Parents and relatives have a huge role to play in continuing to provide support for those people throughout their lives.
In Northern Ireland, we have limited records of the number of children with autism in each trust area who suffer from mental health problems. Again, the report suggests that data should be collected from across the health and social care trusts to better facilitate adequate care. A greater awareness of the specific numbers of children with the condition will inevitably aid the process of administering support services for them. On reflection, that is key to the overall knowledge of where there is particular need.
A significant amount of effort needs to be put into all those areas, but it would be wrong of me to stand here tonight and not commend the changes that have taken place, especially since the last mandate. First of all, I commend the Minister of Education. I was on the Education Committee in the previous mandate, and the one thing that appalled me was the special educational needs review that was brought to the Committee. That was universally disliked, but in fairness to the new Minister, he has turned that on its head, brought forward new proposals to the Committee and is consulting with the Committee to get those changes right. His approach to it all has been a welcome change.
The one thing that impressed me tonight was the contribution from our two Ulster Unionist colleagues. In the previous mandate, there was no such input from that party. In fact, if anything, it was obstructive. I commend the constructive points put forward by those two Members and look forward to them working with the all-party group to improve the situation.
As far as this Minister of Health, Social Services and Public Safety goes, he may be a party colleague, but I will say this: when it comes to autism, there is a basic understanding of the issue. As a colleague, he worked with the charity that I chose when I was mayor, and he got a better understanding of what it is to be autistic. He has been very, very helpful in his approach to it. We have had several meetings with autism charities on issues that they have raised. We are seeing the whole issue move forward with the review group that he has brought into place. I believe we will see a genuine strategy put in place by the lead Department to tackle a lot of the issues.
Will we get it right? Probably not, but the one thing I know about this Minister is that the effort will be put into trying to get it right. All in the Chamber owe our thanks to the Minister for at least putting the effort into making changes for the better for all those with autism. I commend the motion to the House and hope you all support it.
Question put and agreed to.
That this Assembly views with concern the findings of the Northern Ireland-based research carried out by the National Autistic Society into the mental health of children with autism for the “You Need to Know” campaign; and calls on the Minister of Health, Social Services and Public Safety to take on board the main findings of the research as his Department prepares to implement the Autism Act (NI) 2011.
Adjourned at 6.59 pm