Autism Parliamentary Network
The final item of business today is a members' business debate on motion S3M-91, in the name of Nanette Milne, on the autism parliamentary network. The debate will be concluded without any question being put.
Motion debated,
That the Parliament affirms its commitment to work during the new Parliamentary session to improve the lives of people with autistic spectrum disorder; is concerned that, while progress has been made, individuals with autistic spectrum disorder still experience difficulties in accessing the appropriate services and support necessary for them to fulfil their potential, both in Aberdeenshire and across Scotland, and welcomes the development of an Autism Parliamentary Network, co-ordinated by the National Autistic Society Scotland, which will serve as an information channel to support Members of the Scottish Parliament in their endeavours to create a society where autism is fully understood and where people with autistic spectrum disorder are fully respected and supported and receive timely, quality services that are appropriate to their individual needs.
Towards the end of the previous session of the Parliament, I lodged a motion to mark the setting-up of the autism parliamentary network. However, there was no time for a debate on the motion, so I resurrected the idea on my return to the Parliament and lodged a new motion. I am pleased that, of the 41 signatories to the motion, 15 are from the new intake of members. That augurs well for the network, which has been developed and coordinated by the National Autistic Society Scotland to serve as an information channel to help members in our efforts to promote better understanding of autism in Scotland and to create a society in which people with autistic spectrum disorder are fully respected and supported and receive quality services that are appropriate to their individual needs.
It is fitting that the debate is taking place the day after the launch by the Minister for Children and Early Years of the Celtic nations autism partnership and during the think differently, act positively campaign, which was launched recently by the National Autistic Society. The campaign aims to tackle persisting misconceptions about autism and to change public attitudes towards people who are affected by the condition. I am delighted that the campaign has the backing of The Scotsman, which has published a couple of excellent articles by Fiona MacLeod, in which she exposed ignorance and myths about autism and highlighted problems that are faced by people who have the condition, such as bullying at school and difficulty in obtaining full-time employment. I hope that the campaign will raise awareness sufficiently to make a positive difference to the lives of many people on the autistic spectrum who face discrimination and disadvantage because they are misunderstood by the people with whom they come into contact during their day-to-day lives.
I am sure that members know that autism is a lifelong developmental disability, which causes difficulty in communicating with and relating to other people and in making sense of the world. People with autism vary enormously, depending on where they are on the autistic spectrum, from the often highly intelligent individuals who have Asperger's syndrome, who might be regarded as somewhat eccentric and obsessive but otherwise quite normal, to people who have minor communication difficulties, right through to people who are severely affected and have extremely complex needs and require highly specialised handling, peaceful surroundings and well-established routines if they are to have any hope of achieving their potential, however limited it might be.
It is estimated that there are around 50,000 people in Scotland with autism—one in every 100 people. The incidence is quite high in the north-east and is rising throughout Scotland, as more people are recognised as having the disorder. Early diagnosis and therapeutic and educational interventions are needed to help people and their families and carers, so it is sad that there is still a lack of awareness among professionals and services are patchy. A survey of families and carers, which was carried out earlier in the year, revealed a dearth of support for adults with autism.
I confess that, when I entered the Parliament in 2003, autism was little more than a name to me and I knew next to nothing about the variety of needs of people with the condition. However, I was soon approached by a concerned group of Aberdeenshire parents who were determined to secure the best upbringing possible for their children and who were quick to tell me and my north-east colleagues about the lack of appropriate services, such as speech and language therapy and wheelchair provision. I take my hat off to those parents, who as well as coping with the day-to-day problems of having one—or more than one—child on the autistic spectrum, battle tirelessly for greater understanding of the condition and for appropriate services to support their families. Those people should not have to fight for the facilities that they need. I hope that via the autism parliamentary network we will be able to help them to achieve what should be theirs by right.
In the previous parliamentary session, I fought a battle, which I hope will be won, to retain the provision of special schooling for people who need it, instead of putting everyone into mainstream education. The presumption that one size fits all simply does not work for people with autism. I fought hard, along with parliamentary colleagues and parents, to retain facilities such as the excellent St Andrew's school in Inverurie as free-standing special schools, rather than as special needs units attached to a mainstream school. St Andrew's is a happy school, with highly trained and dedicated staff and parents who are willing to travel many miles each day to get their children there because of the great benefits that they gain from the school's ethos and facilities. I hope that it will be able to deliver its highly specialised service for many years to come.
A current worry that was highlighted to me just this week may be of interest to members. The Grampian Autistic Society has operated in Aberdeen and Aberdeenshire since 1988, running services to support people in developing their independence, helping to reduce anxieties and behavioural problems, and ultimately improving the quality of life for affected individuals and their families. Those services are now at risk because Aberdeen City Council has decided to categorise the society as a general home-care service and to fund it accordingly, which means that income from fees will be well short of running costs. If the society cannot continue its provision, the council is willing to commission non-autism-specific services for clients, which will suffice for some individuals but not for others who need the specialist provision that is currently on offer.
The society seeks my help in trying to persuade the council to change its decision. I am willing to do what I can to assist, but I flag up the issue today because I know that several charitable organisations in Aberdeen face similar difficulties. Given the budgetary problems that many councils are experiencing, it may well be an issue in other parts of Scotland, too.
There is no doubt that many children with autism struggle to access an appropriate education. Research has revealed that over a third of children with autism surveyed have experienced bullying at school; a third of parents surveyed have had to wait for over a year before their child received any support at school; and, although 1 per cent of children in Scotland are on the autistic spectrum, there is no requirement for teachers to undertake any training in autism and only one in three parents is satisfied with the level of understanding of autism at their child's school. To help children with autism to access the education that they deserve, the National Autistic Society's make school make sense campaign calls for
"The right school for every child. The right training for every teacher. The right approach in every school."
I hope that the debate will help to highlight the needs of an important group of people who are currently not well recognised by society. I hope that the autism parliamentary network will help us to work alongside the National Autistic Society Scotland and other concerned organisations to improve attitudes and understanding of the condition. I hope that the minister will take on board our concerns at Government level by looking at appropriate teacher training, by allowing the retention of specialist schools for those who do not sit well in mainstream education and by increasing awareness of the condition among employers and others who could make such a difference to the quality of life of people on the autistic spectrum and their families and carers.
I very much welcome the opportunity to take part in the debate and I congratulate Nanette Milne on lodging the motion and giving some much-needed profile to autism.
The Parliament can make a difference on this important issue. The point of being in politics is to make a difference. As Nanette Milne said, autism sufferers throughout the country are looking for assistance and want politicians and the Parliament to play a positive role. We can make an impact through supporting the autism parliamentary network, which has a vital role to play, working in tandem with the National Autistic Society, linking with autism campaigns throughout the country and bringing the issue to the Parliament and the committees. It will help to raise awareness of the issue in the Parliament and throughout the country and enable us to make a difference to the lives of autism sufferers and their families.
Nanette Milne touched on the crucial importance of raising awareness of autism. Fifty thousand people in Scotland have autism, but 92 per cent of people are unaware of how common it is. Autism sufferers and those who support them have to overcome a number of obstacles in trying to raise awareness of the condition. One of those is the perception that all autism sufferers are a bit like the Dustin Hoffman character in "Rain Man", who has special gifts. In fact, only one in 200 autism sufferers falls into that category.
Another difficulty for parents of young children who have autism arises when they are out and about in public. Some autistic kids have behavioural difficulties and the public might not be aware of what those parents must deal with. Such issues must be overcome. If we can raise awareness, people will have a better understanding, which will lead to improved resources that will help communities and provide much-needed support.
Education is vital. We talk a lot about education in the Parliament and it is a big priority for MSPs. Education is vital for autistic children and adults. With better education, we can provide autism sufferers with the skills and techniques to cope better in the difficult world that they must face.
Resources are important to that, particularly for young children in primary schools, as Nanette Milne said. In my area, a campaign was launched two weeks ago in Rutherglen and Cambuslang to improve resources for autistic children. South Lanarkshire Council provides excellent resources in all other areas of South Lanarkshire but, unfortunately, Rutherglen and Cambuslang are lacking. The campaign wants the council, which has an excellent record of reaching out to communities, to extend those resources to Rutherglen and Cambuslang. The campaign had a successful petition with great feedback on the streets at the weekend. I will work with that group to achieve a successful outcome.
I am conscious that I am running out of time to mention other important issues, such as the need for early diagnosis and early intervention. I thank Nanette Milne for initiating the debate, which has been useful and will provide a platform for raising awareness of the importance of autism issues, not just in the Parliament but throughout Scotland's communities.
I, too, congratulate Nanette Milne on securing this evening's important debate.
Autism is not new. The first detailed description of a child whom we now know had autism was written in 1799 by Jean Itard in his account of the wild boy of Aveyron. The first time that I heard of autism was in the 1970s when I watched the programme "Nationwide", which, despite its title, covered not just Scotland, but the UK. On that programme, autism was described in its most extreme form and the prevalence was said to be one in 5,000 to one in 10,000.
Of course, we now know that autism is much more prevalent. As has been said, there are 50,000 sufferers in Scotland, so perhaps one person in 100 suffers from autistic spectrum disorder, which can have a devastating impact on the lives of those whom it directly affects.
One of my closest friends has a nine-year-old son—Dominic—who has severe autism. Dominic cannot speak, is extremely temperamental and can show deep frustration at his inability to communicate by randomly picking up and throwing heavy objects accurately—as I have found to my cost. I have been astonished by the incredible patience that Dominic's parents have shown and by their determination to secure the best possible future for their son. That has not been easy.
As members know, the quantum leap in the diagnosis of autism in the past decade or so has greatly exceeded the growth in services to cope with that diagnosis. That has left many parents feeling let down by local authorities.
In this parliamentary session, the first session and my time as a Glasgow city councillor, I have dealt with a number of parents who believed that their children's needs were not met, that their concerns were dismissed and that their wishes were ignored. No two autistic children are the same, so it is vital to gear services to an individual child if he or she is to reach his or her full potential. Services must evolve to meet that challenge.
Of course, autism is not just about children; it has an impact on adults, too. Last night, at the cross-party group on disability, concerns were voiced that the Education (Additional Support for Learning) (Scotland) Act 2004 is not as effective as it should be in helping young people with autism through the transition to adulthood.
On 9 August, I lodged three parliamentary questions, S3W-3115, S3W-3116 and S3W-3118 on the subject of autism. The Minister for Public Health responded positively to S3W-3116, on transition, in relation to the work that is being done on the guidance for commissioners of services for people with autistic spectrum disorder. She gave a similar answer to S3W-3115, on services for adults with autism. When the Minister for Children and Early Years responds to the debate, I hope that he will expand on where we are with the guidance.
Of course, progress is being made. I am pleased to say that that is the case in Ayrshire, where Daldorch House school has recently opened in Catrine. The school, which is managed by the National Autistic Society, offers continuing education and supported living for 16 to 21-year-olds from across Scotland and is the first of its type in Scotland. It provides 27 residential places and eight day places for young people with autism who require intensive and specialised support. That is the level of service that I hope we can continue to see.
James Kelly touched on the think differently campaign, which is important in raising awareness of autism and letting people know exactly what autism is all about. In fact, many people have the wrong idea about people with autism; they think that they cannot be reached. That is because, in previous generations, many people believed that all autism was the extreme variety that I mentioned at the beginning of my speech. With the right structured support in and outwith our schools, individuals with autism—including adults—can be helped to reach their full potential.
There is, of course, no reliable prevalence estimate or register of people in Scotland with autism. I hope that we can move forward on that, as a Parliament.
I note that you are nodding in my direction, Presiding Officer. I believe that you wish me to discontinue my contribution, so I will finish by saying that, as a founder member of the cross-party group on autism in the first session of the Parliament, I welcome the development of the autism parliamentary network. I also welcome all the work that Nanette Milne has done in achieving that.
I add my thanks to Nanette Milne for bringing the motion to the chamber.
I commend the National Autistic Society Scotland for its initiative in founding the autism parliamentary network, which will not only be an invaluable resource for parliamentarians, but encourage greater understanding of autism. It will also provide a forum for discussion, which I hope will lead to change and development in the provision of services for those with autism and their families. Surely all of us must be determined to see improvements to health, education and social care services for children and adults with autistic spectrum disorder.
The Scottish autism service network, which I think is unique in the United Kingdom, was developed with a £300,000 package of funding from the previous Executive. It offers diagnosis information, advice and support to a number of groups, including people with autism, their families, carers and practitioners. The intention in establishing the network was to help support local agencies throughout Scotland to deliver better services for those who are affected by ASD.
I turn to the work that Robert Brown took forward when he was the Deputy Minister for Education and Young People. I refer in particular to the formation of the ASD education working group, which has the aim of taking forward improvements, including those that were recommended by the NAS's make school make sense report. I ask the minister to commit tonight to carrying forward the network's work, through continued funding, and to support fully the implementation of the make school make sense recommendations.
I want further improvements in education provision for children in Scotland with autism. Personalised learning must become central to the education of every child. Learning and teaching must be flexible enough to adapt to the individual and to ensure that every child gets the very best out of their time at school.
Although there are many good examples of initiatives across Scotland, the reality is that there are still difficulties in accessing appropriate services and support, and there is disparity in provision.
In the North East Scotland region, as Nanette Milne said, the Grampian Autistic Society has operated in Aberdeen and Aberdeenshire since 1988. It provides a range of specialist, targeted services. The organisation runs on a shoestring. It has relied on commissioning bodies, such as councils, recognising that it offers a specialised service and funding it appropriately.
I am concerned that Aberdeen City Council has reduced the available funding for those specific services. The effect is that, in my region, a matter of miles can determine what support is available for people. That is despite the fact that Aberdeenshire Council deals with significantly more people with ASD than Aberdeen City Council deals with, which cannot be right. The Government must ensure that adequate resources are provided to ensure that councils are not forced to reduce services because of budget pressures. I have real worries about the Scottish National Party's proposed council tax freeze and the impact that it might have on similar services in the next few years.
Several issues would benefit from early discussion in the autism parliamentary network, from the general issue of how to tackle the lack of understanding of the syndrome—which exists not only among the public but, worryingly, among education, health and care professionals—to more specific issues, such as the lack of support for adults with ASD. I look forward to participating in the network and I will do all that I can to ensure fairer access to better services for everyone with ASD in the North East Scotland region.
I will restrict my remarks to the field of education. Along with other members, I congratulate Nanette Milne on bringing the debate to the Parliament. I agree with her comments on special education. It might be time for a review of that provision across the board, to ensure that we are getting it right and that appropriate education in special schools is available for all those who need it.
I support the make school make sense campaign. Parents who are placing a child with any form of autistic spectrum disorder should be able to sit down with the school and identify whether it is prepared—for example, whether appropriate assistance is available and whether the teachers are aware of the lesson plans, teaching and care that they should provide for autistic children. The number of complaints that I have received from parents about what is available for their children in secondary schools suggests that that process is not happening. Children go to school and then all the problems start, because nobody has thought to address the issues beforehand.
My final remarks are on bullying. A school that I taught at, which was well run, carried out a bullying audit, which found that more than 40 per cent of all the children in the school, unbeknown to us, had either been bullied or engaged in bullying. The problem in Scotland, despite the work of the anti-bullying network and the commitment from local authorities to deal with bullying, is much bigger than we realise. Scotland's Commissioner for Children and Young People is concerned about the matter and is doing something about it, but we need a concerted attempt throughout Scotland. We must revive the anti-bullying network and put best practice in place. It is not enough to have a piece of paper with an anti-bullying policy; schools must have active anti-bullying policies that involve all the children, if they are to work. The best policies work and reduce bullying across the board.
Routine bullying can be corrosive for children. The issue does not apply only to children with autistic spectrum disorder but, for them, it is even more serious because it is much more difficult for them to communicate their pain and suffering. They need to be encouraged, through vibrant and active anti-bullying policies in their schools, to engage in protecting themselves.
I congratulate Nanette Milne on securing this debate addressing the challenges that are faced by people with an autism spectrum disorder. I welcome the contributions that others have made to the debate—our group might be small, but it is perfectly formed.
I, too, support the development of an autism parliamentary network, which can only strengthen our efforts to ensure that people on the autism spectrum are better understood and better supported by our health, education and social care services.
I am grateful that Nanette Milne and others acknowledge that substantial progress is being made and, although we are by no means complacent, I would like to highlight some of those achievements.
Through the national autism spectrum disorder reference group, the Scottish Government is improving assessment and diagnosis and the provision of information and training and is supporting innovative projects like Number 6 in Edinburgh and the adult resource centres in Glasgow and Aberdeenshire. Through those initiatives, adults who previously were not offered any support have managed to access training and employment, build relationships and improve their mental well-being.
The national reference group has also worked to improve the consistency of diagnosis across Scotland by training professionals in the use of agreed diagnostic tools, which has had the added benefit of reducing some waiting times. The Scottish intercollegiate guidelines network has now published extensive guidelines—in fact, Scotland is unique in Europe in doing so—on assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders, which will provide the evidence base to help doctors better diagnose and manage the condition.
Early diagnosis is critical, as James Kelly said. As I said in last week's debate on early years and early intervention, our focus must shift to preventing the emotional and behavioural problems of young people who have the disorder and helping to build resilience during the early years. We need policies and services across the board to deliver early intervention, thereby reducing the demand for crisis intervention, which currently dominates our systems. People with autism spectrum disorders, like everyone in Scotland, need health services to be there at the time when they need them.
Our communities also have a significant role to play in supporting positive childhoods and the quality of experience for children. I heard what was said earlier about discriminatory attitudes to youngsters with autism and I picked up on what Robin Harper said about the bullying of youngsters. We are reviewing school disciplinary policies at the moment and perhaps we should be considering the issues that have been raised today in that context.
The anti-bullying policies that work are those that are separate from disciplinary policies. They are about inclusion and helping the bully as well as the bullied.
I stand corrected. However, we need to examine bullying in schools and I think that it is relevant to link the issues in that context.
The development of local area co-ordination, as recommended in "The same as you?", is vital in helping people on the autism spectrum to be part of their community. Guidance will shortly be issued to promote greater use of local area co-ordinators by demonstrating how that role can be pivotal in delivering personalised services and self-directed support. That is still in its infancy, but, hopefully, we will see progress in that area. As Kenny Gibson said, guidance for the commissioners of health and social care services in relation to people on the autism spectrum is also near completion. The guidance will include good examples of successful practice.
I turn now to education. I would readily commit to support for special schools. There are a number of fine establishments up and down the country; Kenny Gibson mentioned Daldorch House in Ayrshire, which I visited recently. Robin Harper mentioned mainstreaming. The time is coming for a review that considers the place of special schools. I will certainly be looking at reinforcing support for the vital provision that such schools offer.
We must also recognise the role of education services in supporting young people on the autism spectrum. I am particularly concerned with ensuring that those young people receive the education that they deserve to ensure that they achieve their fullest potential.
Considering the needs of the individual is the key message of the Education (Additional Support for Learning) (Scotland) Act 2004, which came into force on 14 November 2005 with the aim of creating a stronger, better system for supporting children's learning. We know that schools alone cannot deliver all that children and young people need to make the most of their education. The act recognises that other agencies, particularly in social services and health, have a critical contribution to make. Those agencies need to be involved, especially at the time of transition to post-school provision.
The 2004 act also introduced new rights for parents. If parents feel that their child is not getting the education that he or she deserves, they have the right to give their view about the support that their child is getting. They also have the right to call for assessments. Like other members, I want the act to make a real difference to the lives of children and young people with ASD, but I accept that there is still considerable room for improvement.
Last year, Her Majesty's Inspectorate of Education published its report on educational provision for children with autism. Inspectors found much good practice in the work of education authorities, but made a number of recommendations to address the considerable challenges that still exist. To assist in taking forward those recommendations, and those made in the National Autistic Society's make school make sense report, the Scottish Government has created an autism spectrum disorder education working group—which is quite a mouthful. Alison McInnes mentioned the role of Robert Brown in setting up the group. The intended outcome of the group is a resource pack for education authorities that will include guidance on strategic planning for future service provision.
I recognise the need for qualified teachers to increase their knowledge and awareness of additional support needs. Following recent talks, the General Teaching Council for Scotland has added five new areas to the professional recognition framework, one of which is autism. That will allow registered teachers to gain recognition for enhancing their knowledge and experience in this area.
Nanette Milne mentioned appropriate teacher training. She may be aware that the Scottish Government is funding the University of Aberdeen in a project to embed within initial teacher education inclusive approaches to teaching pupils with additional support needs. That work will include autism. I hope that the project will be a good model that can be spread out to other providers.
The Scottish Government recognises that much can be learned from sharing experiences. Last night, I was delighted to attend the Scottish launch of the Celtic nations autism partnership to support its work. Nanette Milne also mentioned the partnership. It provides Governments and support organisations with the opportunity to share ideas on developing the best possible outcomes for children and adults with autism.
I am well aware that the majority of support for children and adults with ASD comes from family carers. So, in concluding, I would like to extend a special thanks to all support providers—in particular, the national societies—for supporting families through the stress and uncertainty that comes with a diagnosis of ASD.
It is for us all, whatever our role, to ensure that policies are translated into practice. General and specialist services across health, social care and education all need to recognise and meet the needs of people with ASD and their families by working effectively and in a spirit of collaboration.
Meeting closed at 17:40.