Count Us In (Autism)
The final item of business today is a members’ business debate on motion S4M-05568, in the name of Mark McDonald, on count us in. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes the publication of the report, Count us in: it pays to listen, by the National Autistic Society Scotland as part of its Count us in campaign to give people with autism more of a say in decisions that directly affect them; understands that there are approximately 50,000 people with autism in Scotland, with an estimated 6,000 of these living in the north east of Scotland, and autism directly affects around 200,000 people every day; further understands that only 15% of adults with autism are in full-time employment and 39% of those interviewed for the Count us in report said that they had lost a job as a result of their autism; welcomes the Scottish Government’s investment of £13.4 million over four years to implement the first autism strategy to improve support services for adults and children with autism and their families; further welcomes the input of the Count us in campaign, and looks forward to working with a range of organisations to continue to maximise the opportunities created by the strategy and by involving people with autism more closely in the decision-making process.
17:05
At this morning’s Health and Sport Committee meeting we had a discussion about the national autism strategy. It is timely that, following that discussion, we have this debate in the Parliament. I thank the members who supported my motion and who have remained in the chamber to listen to or contribute to the debate.
The report, “Count us in: it pays to listen”, was launched by the National Autistic Society in the Parliament. The actor Richard Wilson, who is the patron of the National Autistic Society in Scotland, attended the launch, as did the minister and a number of members—including you, Presiding Officer; I know that you have previously chaired the cross-party group on autism. I think that all members agree that the reception was excellent and highlighted a number of issues that are raised in the report.
In the report, four key priorities are identified that should be pursued at national and local levels. The first is sustained employment, and the Scottish Government is asked to
“appoint an Autism Employment Ambassador to champion opportunities for people with autism in the workplace.”
The report’s authors go on to say:
“Local councils should map the need for employment support in their areas and include employment support for people with autism in their local plans.”
The second priority is choice and control. The report’s authors say:
“With effective transition planning and support after diagnosis, people with autism should be empowered to advocate for themselves. The availability of, and need for, independent advocacy services should be mapped across all services that people with autism need to access.”
The third priority is challenging discrimination, and the report says:
“The negative attitudes many people with autism experience are debilitating and must be challenged with a concerted campaign to raise public awareness and understanding of autism.”
Finally, on professional knowledge and access to support, the report says:
“Sensitively handled, the experience of getting a diagnosis and support to understand its implications can make a huge difference to personal happiness.”
The Scottish Government is asked to consider a national health service health improvement, efficiency and governance, access and treatment target, to deliver post-diagnostic support. The report goes on to say:
“Local authorities should invest in specific services that help address social exclusion and the challenges of self-advocacy among people with autism from across the spectrum”.
On employment, 43 per cent of graduates or postgraduates with autism never achieve any sort of managerial position. Thirty-one per cent of people with a higher national certificate, higher national diploma, degree or postgraduate qualification are unemployed. Half the people with autism who were surveyed for the report have experienced career regression and are consistently failing to achieve the average earnings of their peers. Some 24 per cent have not had paid employment since they were 18, and 66 per cent rely to some extent on their families for financial support.
Of the people who were surveyed, 53 per cent wanted support with employment, 39 per cent had lost a job due to their autism, 36 per cent said that they had experienced discrimination or unfair treatment at work and 55 per cent wanted help with developing social skills.
From my discussions with individuals, at the reception and in the community, I have been interested to learn that people with autism do not need massive changes to be made to the workplace environment to enable them to sustain employment. Employers should take an active interest in considering whether they could do something in that regard. At Scottish Parliamentary Corporate Body question time, I asked about accreditation for visitors to the Parliament, and I have spoken to local representatives of NAS about whether it would be worth having some form of accreditation or kite mark that employers could achieve, to demonstrate that they provide an autism-friendly workplace, not just on the customer-facing side of the business but for their employees.
At the reception, we heard from Michael Clarkson, a gentleman with Asperger’s syndrome. He spoke of his experiences and his difficulties in finding a suitable job. It was interesting to hear him talk about his hobby and passion, which is cricket scoring, and his achievement of becoming a member of the International Cricket Council’s European scorers panel. His experience exemplifies the talents that people with autism and Asperger’s syndrome have, which could be utilised in the workplace if employers took a more sensitive approach.
On choice and control, 91 per cent would like more say over the support that they receive; 66 per cent have not made use of an advocacy service; 16 per cent currently have access to advocacy; and 37 per cent would like advocacy support. It is important that what is being asked for here is, first, the ability to self-advocate where possible. Many people with autism and Asperger’s syndrome are perfectly capable of self-advocating. Where that is not possible, the ability to access advocacy services absolutely has to be available.
On the issue of challenging discrimination, 79 per cent of those surveyed think that the public’s understanding of autism is poor or very poor, and 78 per cent of young people with autism think that people outside their family do not know enough about autism. Sixty-five per cent of young people with autism have been bullied at school; 33 per cent of adults have experienced bullying or harassment at work; and 36 per cent have experienced unfair treatment or discrimination at work. I will return to that issue in my closing remarks.
On professional knowledge and access to support, 33 per cent say that it has taken three years or more to get a diagnosis; 42 per cent say that the process was too stressful; 27 per cent say that they have been misdiagnosed; and 6 per cent have paid to access diagnosis.
Those who have spoken about autism, both on the record and to me, acknowledge that it is a great relief when a diagnosis arrives—not just to the individual but also to their family. They can then access the necessary support services that are available. We must do everything that we can to ensure that that diagnosis is both prompt and appropriate.
I said that I would come back to the issue of discrimination. We entrust many of these targets to the Government. I know that the minister has taken on board the recommendations and fed them to the national reference group that he has established as part of the autism strategy. However, there is one target that falls not just on the shoulders of Government, but on the shoulders of us all. That is the issue of challenging discrimination. I was privileged to speak at the recent Aberdeenshire conference on autism, where I talked about addressing the societal perceptions that exist and the duties that we all have.
I am a parent of an autistic child. My son is four and was diagnosed with autism when he was three. I have encountered the discrimination and difficulties that can arise because people do not understand autism. People give looks and tuts; they offer advice about how you should be looking after a child who is having an autistic meltdown that is, frankly, completely inappropriate. Other parents have experienced great difficulties, too. I heard about a wee boy who was the only child in his playgroup not to be invited to one of his peers’ birthday parties because of the way he behaves as an autistic child. Imagine the hurt and damage that that can cause children and their families.
The challenge for us all, in all walks of life—whether as parliamentarians who have the privilege of being able to express our views to the organs of the press, or as individuals in our communities, talking to people and challenging stigmas and attitudes where they arise—is to ensure that discrimination about autism ends. We want to see a time when we do not need to campaign for understanding and acceptance of autism because people with autism are accepted, understood and recognised as the valuable part of our community that we all know them to be.
17:14
I very much welcome the report, “Count us in: it pays to listen”, by the National Autistic Society. The event in the Parliament was excellent. I learned an awful lot that night about, among other things, the absolute potential that so many people with autism have, which goes beyond anything I could ever aspire to. It was truly enlightening.
I welcome, too, Scotland’s first autism strategy and our Government’s investment in that. However, while it is great that our strategy is there, there are always further steps to take after first launching a strategy. I know that the minister, Michael Matheson, is always looking to see how the strategy can be improved. There is always more to be done: bits we might have missed or could add to. I do not necessarily mean that that is always the Scottish Government’s responsibility, because some things that could be much improved are the responsibility of local government, in its areas of operation, or of the Westminster Government—issues such as benefits, for example.
I would like to quickly outline a few examples of issues that I have come across through talking to constituents who have autistic children or are looking after autistic adults.
I always find the terminology difficult. Mark McDonald was saying that people just do not understand it. Part of that is because of the huge variation among people who are on what we call the autism spectrum. That variation can be physical, as well as in terms of ability levels. I am not an expert in these things but I am told that the autism of one young chap in my constituency is so severe that it affects him physically as well and gives him very particular special needs.
I find that, very often, at a local authority level, services are not quite matched up. I know one family in which there is quite a severely autistic child who needs a high level of looking after. His mother, Catriona, also has responsibility for looking after her mother, who suffers from dementia. She finds that she can get support to help with her mum and she can get support to help with her wee lad, but she can never get both elements of support at the same time. As a result, she never gets any time on her own because, on the day when she gets respite care for her lad, she is looking after her mum, and vice versa. Meanwhile, her husband is working every hour he can to give his family as good a life as possible. There seems to be no way of bringing the services together so that she gets a break every now and then. If there were someone who could sit down with a family and look at all their needs in the round, that might make things a bit easier.
The transition from childhood to adulthood is important. I recently had an interesting discussion with people with varying needs—some were autistic and others had various physical needs. They were a group of people who have gone to the wonderful Sanderson high school in East Kilbride together. All of a sudden, they are leaving school, they do not have a youth club to go to any more, either, and they have nowhere to go where they can meet as friends and feel comfortable in their routine. There is nothing there to help them. In this case, parents are getting together to provide something, and we are trying to help with that as far as possible.
I would be grateful if you could come to a close.
The final thing that I wanted to say was about how funding and benefits cut off at that transition point, too. A young constituent of mine, Anthony, has very severe needs and requires the same level of care from his mum at 18 as he did at eight, and her income has been cut—for all sorts of reasons that I will not go into—by up to £500 a month. They are going through difficult times and every agency that is able to help ought to be doing an awful lot more.
I should have said this at the beginning of the debate, but members should make speeches of no more than four minutes.
17:18
I congratulate Mark McDonald on bringing this important subject to the chamber, giving us the opportunity to recognise the great work that is done by the National Autistic Society Scotland and enhancing our understanding of the issue, of which he clearly has a great deal of experience because of family circumstances.
The most crucial point of the “Count us in: it pays to listen” report is that the experience and advice of those who live with autism should be listened to and used to produce more effective services. Clearly, that applies in general to many other services. I suppose that it is what we used to call co-productionism. I do not know whether that term is still used, but I know that the Scottish Government is supporting that in various ways and I am pleased that it has today said that it will endorse the patient opinion website, which provides another way of listening to the views of those who use services.
The report highlights the fact that the lifetime cost of providing support for people with autism ranges from £3.1 million to £4.6 million. Working closely with service users not only allows individual service users a greater degree of control but also saves costs in the long term. What is more, an overwhelming majority of respondents to the report’s survey desired the switch to greater control.
First, the report emphasises sustained employment, which is fundamental to achieving structure and coherence in life. That is why the report suggests that an autism employment ambassador should be created to champion among employers the importance of employing people with autism. As we have heard, the statistics are shocking: 24 per cent of those questioned in the research said that they had never been in paid employment and 66 per cent rely on financial support from family members. That is in stark contrast to the clear desire for self-sufficiency that comes through in the report.
Secondly, the report emphasises choice and control through developing the ability to self-advocate. As it is for some other groups, access to independent advocacy services must be a fundamental part of that. Access to clear information about support options, and the opportunity to communicate with advocates and, later, to self-advocate, allows the individual to make independent choices and feel empowered when those choices improve their lives.
For any targeted approach to autism services to work, it is necessary to challenge the discrimination that many face in their daily lives. Thirdly, the report addresses the barriers faced in the workplace, in the process of accessing services and in the educational environment. Many believe that achieving a wider and more thorough understanding of autism in the general community is vital if those barriers are to be overcome. I certainly take that view. The report suggests that a nationwide campaign to raise awareness is essential if autistic people are to feel able to integrate into various social and work situations without being victimised or misunderstood.
Finally, we must ensure that timely diagnosis is possible through increasing professional knowledge of the key signs of the condition. It is vital that autistic people feel able to trust and confide in service providers. Increasing understanding of symptoms is a key starting point for that. Correct diagnosis is the precondition of the appropriate post-diagnostic support that is advocated in the report.
Mindroom, a wonderful charity based in my constituency, which I visited quite recently, highlights that there are at least five children with some form of learning disability in every classroom in Scotland and that the characteristics associated with autism are apparent most often before the age of three. Education of our professional community must not end with general practitioners and healthcare workers but must extend to our teachers and nursery staff. A confident and empowered adult stems from a self-assured and supported child. In recognising that, let us aim continually to improve support for people of all ages as we implement the national autism strategy. I am pleased to join Mark McDonald in commending the report and the work done to date, and I commend the motion.
I ask members to be courteous to those who have stayed for tonight’s debate and not to chat through their speeches.
17:22
I, too, thank Mark McDonald for bringing the motion to Parliament and allowing us to debate the report, “Count us in: it pays to listen.”
As many members have, I have had to deal with constituents who have family members who have been diagnosed with autism. All of them are looking for additional support and many are struggling to get any form of support at all. Having no prior knowledge of local voluntary support groups in their area, they seek guidance to help them to provide the best possible care for their loved ones.
That is why we must welcome the Scottish Government’s investment of £13.4 million over the next four years. I hope that it will help to improve the situation for adults and children with autism by providing the means for agencies to help to implement appropriate resources and strategies, where necessary. It will also help families who, although dedicated and committed to looking after loved ones with autism, are sometimes under pressure, as are lone parents, who often feel isolated and unable to cope.
“Count us in: it pays to listen” highlights the challenges that face the 50,000 Scots with autism, and calls for a greater working partnership between the Government, local authorities and support organisations. Listening to people with autism and their families can bring about meaningful change that impacts on their quality of life.
The national survey shows that 91 per cent want more say in their support; that 79 per cent think that the public’s understanding of autism is poor or very poor; that 69 per cent of adults with autism have not had an assessment of their needs since turning 18; and that 66 per cent feel that they do not have enough support. That is why it is important that people with autism and their families are listened to and their recommendations taken into account. If they are allowed to take part in planning future services, that can highlight the conditions that they have to deal with daily.
The four main areas in the report—“Sustained employment”, “Choice and control”, “Challenging discrimination” and “Professional knowledge and access to support”—all show the need for greater partnership working to provide the services that people with autism and their families want and need if they are to get appropriate support.
A theme that runs through the report is that there is a lack of understanding by service providers and employers, and a lack of training in the health service to facilitate quicker recognition of signs of autism in order to implement practices that are needed to provide adequate support to individuals. In the research, 27 per cent of respondents said that they had been misdiagnosed and 23 per cent said that it had taken three years to get diagnosed, which equates to stressful times for individuals and their families.
I have had the privilege on several occasions of visiting in Kirkcaldy the new Scottish Autism outreach base, which was opened in 2011. The base was suggested by parents and users who thought that there was a need for it in the Kirkcaldy area. The staff and volunteers must be congratulated on providing services that are designed to meet the needs of those who use them. The base offers social areas and a wide variety of activities such as food preparation, menu planning, budgeting, art work, music therapy and information technology access, all of which are designed to follow the individual’s support plan.
I thank the National Autistic Society Scotland for its excellent report and for highlighting the experiences and difficulties that people with autism and their families have in accessing a range of appropriate services. The report also highlights the lack of understanding in many sectors of the community of the needs of those with autism. If those needs were addressed, that would help to enhance the quality of life of people with autism.
It is essential that we engage with and listen to people and families who deal daily with autism, so that we hear how it affects their lives in order that we can provide them with the future that they deserve.
17:26
I, too, thank Mark McDonald for securing a debate on the “Count us in: it pays to listen” report, and I welcome the work of the National Autistic Society in preparing such an excellent report.
For all the progress that we as parliamentarians have made in how we recognise the needs of people with autism, it is surely our subtle change of perspective that is most valuable. Across the chamber, we have become positive—perhaps even optimistic—about the potential of autistic people to live independent lives, based on respect for their different outlook, and on recognition of the support that they require. It is worth taking a little time to reflect on that cultural shift, because taken beyond autism it shows a belief in the centrality of the individual. The same approach has inspired work in Parliament on self-directed support and—even more broadly—in personalisation of public services.
We now also clearly acknowledge the enormous variation in the symptoms of autism among individuals, which is an important basis for greater understanding of the condition. We are no longer trying to shoehorn autistic people into our own standards of normality or—which was even worse—carrying out the invidious practices of mass institutionalisation or segregation of autistic people from society. However, we should not forget that it was not always so, and that in many countries around the world—even developed ones—approaches that we in Scotland have relegated to the past are still accepted.
Living an independent life will not always be possible for every person with autism, but there is little doubt that improvements can be made. Independent living will certainly be one of the barometers against which Government policy in this area is measured.
The number of people with autistic spectrum disorder who are currently in employment is one part of the mix that can be looked at, and I am attracted by the proposals for an autism employment ambassador. The barriers to employment that are mentioned in the report are particularly striking. Given that more than a third of participants clearly identified inequitable treatment in the workplace, in addition to the other challenges that they face, it is not difficult to see how a person’s self-esteem can drop or their feelings of isolation increase, driving them away from employment.
I am pleased that the National Autistic Society encourages us to believe that there can be real policy-driven change in this area. We can take heart from how much difference national approaches have made in education for people with autism in a relatively short time.
A modern and recognisable understanding of the needs of young people with autism crystallised only in the 1970s. Countries such as Sweden that have adapted their approaches accordingly have seen high numbers of autistic children educated in the school environment. In others, however, autistic children still do not have the support to meet their school and education needs. Although in Scotland there has been significant progress in early diagnosis and support for children with autism, we heard this morning that many adults on the spectrum remain undiagnosed and without the help and support that they need.
A successful outcome for people with autism—whether they are children or adults—will be underpinned by how effectively support is provided. What we stand to gain will be measured in improvements to quality of life, but it can also be analysed in economic terms by what has been called the invest-to-save agenda.
Much has been written about the possible advantages of microsegmentation of the autistic population, which involves recognising and adapting to the different categories, abilities and challenges that are part of this very individual condition. There is a great deal of promise in that method of tailoring services and in the possibility of driving forward the personalisation agenda in that way. There is still much to do to demonstrate the practicalities of wider implementation of the approach. It is welcome that the autism spectrum disorder reference group has taken forward the research seriously.
We must work towards bringing together changed attitudes and improved and better-directed support across all levels of public service, in order to identify the particular needs that arise from the individual challenges that autism presents. The report is a useful contribution to the debate and I congratulate Mark McDonald on bringing it before us.
17:30
I add my thanks and congratulations to Mark McDonald on securing the debate. I will pick up on two aspects of the “Count us in” report: partnership working and challenging negative attitudes. I will marry those aspects to the national autism strategy, which the Government produced 18 months ago. My remarks will be based on the Asperger’s end of the spectrum, because I know quite a lot about that.
The parliamentary reception that Mark McDonald hosted and to which he referred was an affirming event to attend. At the reception, I met young men with Asperger’s. They were there, whereas most of the young men in their 20s with Asperger’s whom I know would find it difficult to get out and come to an intimidating place such as that reception.
It was really interesting to meet those young folk and hear about the support that the National Autistic Society is giving them. A couple of the young men were constituents of mine. Their parents were also at the reception, and I heard from the parents about the support that the society had given the young men to take them through school and through the transition to being young men in their 20s who, as a group, go to the pictures and can come to the Parliament on the train, for instance.
It is important to mention that, because folk do not understand what autism can do to people—people do not understand how isolating it can be for individuals who are on the autistic spectrum. In relation to partnership working, I am pleased that one goal of the third strand of the national autism strategy is to work towards meaningful partnerships, which are important.
Meaningful partnerships are also important in challenging negative attitudes. “Count us in” makes a big thing of talking about ensuring that we challenge negative attitudes in the public. Mark McDonald referred to the autism meltdown in the supermarket. Any toddler meltdown is awful, but that one is worse than most.
It is also important that we challenge negative attitudes among our services. Partnership working will perhaps lead towards that. I remember way back when a two-year-old with undiagnosed Asperger’s and his parents were told by his nursery teachers that he was a rude boy. The labelling of any two-year-old as rude tells us something about the people who are working with that child but, when the child has autism, there is a fundamental issue. That should have been a trigger to make professionals say, “Wait a wee minute—what’s going on here? Should we investigate further?”
Twenty years on from those nursery teachers, I am sure that things are a lot better. With partnership working, I am sure that we can challenge negative attitudes in professions as well. I see that goal number 4 of the second strand of the autism strategy is that people with autism should be
“met with recognition and understanding”.
That approach cannot come quickly enough. I do not want to bring too much dissent to the debate—actually, what I am saying is not dissent. Under the welfare changes, people who are on the autistic spectrum and who receive incapacity benefit and disability living allowance will face reassessments by a computer-driven system that is run by Atos Healthcare, and they will find it incredibly difficult to have their needs understood.
I congratulate Mark McDonald and thank him again.
17:35
As other members have done, I congratulate Mark McDonald on securing time for the debate and on giving the Parliament the opportunity to consider some of the issues that are highlighted in the “Count us in: it pays to listen” report. I welcome the publication of the report, particularly because of the way in which the National Autistic Society has listened to the views of those with autism in shaping some of the key issues that are highlighted in the report.
As Mark McDonald mentioned, I attended the recent parliamentary reception and, like Fiona McLeod, I found it affirming. It was a good opportunity to highlight the content of the report and it allowed those who were involved in helping to shape it to engage with elected members and to discuss their views and aspirations.
One key aspect of the report and the work that the National Autistic Society has undertaken is the way in which it has looked at the issue of autism across Scotland and considered what quality of life means for individuals with autism and what changes they would like. The driving force behind that approach is that the society very much believes that individuals with autism are experts in their own right about their condition. The society is completely correct on that. As in many other areas such as caring, the experts in the field are often those who have direct personal experience. The report sets out the views and aspirations of those with autism and what they want to be put in place.
Members have referred to the four key recommendations in the report. One is on sustained employment and the appointment of an autism employment ambassador to help to provide opportunities for people with autism in workplaces. Local authorities can do work on that.
The second recommendation is on choice and control, which is about effective transition planning and support after diagnosis to enable people with autism to self-advocate. The third is on challenging discrimination, which Mark McDonald highlighted. Many people with autism often experience negative attitudes and a lack of understanding and appreciation.
The fourth recommendation is on improving professional knowledge and access to support in local authorities, the health service and other services. Those bodies have an important role in helping to address issues of social exclusion and to challenge issues that might be causing difficulties for individuals with autism and their families and carers.
The Government is committed to seeking to improve the lives of people with autism and their families and carers in Scotland. In November 2011, I launched the Scottish strategy for autism, which was undertaken in partnership with the Convention of Scottish Local Authorities. If we are to achieve the type of change that I believe is necessary, the key part of the strategy will be partnership working between the statutory and third sectors collectively to deliver the necessary change.
If any strategy, whether it be on autism, carers or mental health, does not create real change on the ground for individuals, their families and carers, the words on the page mean very little. I am determined to ensure that the autism strategy delivers real change that has a positive effect on the lives of individuals with autism and on their carers and families. Local authorities have an important part to play in delivering that. Linda Fabiani highlighted a good example of the need to ensure that services operate in a joined-up way that offers carers the best opportunity to continue their caring role.
To help to deliver some aspects of the strategy, the Scottish Government made an investment of £13.4 million of funding over the next four years. One part of that is the autism development fund of £1.5 million per annum, which is being made available to local and national organisations to allow them to deliver local services on the ground. To date, 53 organisations across the country have benefited from that funding.
Other initiatives are being funded to drive forward the work of the strategy to address the gap in services and to achieve the strategy’s two-year, five-year and 10-year goals, including the roll-out of six new one-stop shops across the country, funding for training courses, and investment in a 10-month national mapping project.
That mapping project will be extremely important in helping us to identify what services exist, where the gaps are, and what action needs to be taken at the local level to address the issues. Only yesterday, I met representatives from a local autism initiative in my constituency, which continues to be challenged by gaps in services. If we are to make progress, it is important that we identify those gaps. It is equally important that, when individuals are diagnosed with autism, they and their carers and families have somewhere to go to get information about the services that are available. The one-stop shops have a key role in helping to deliver that.
The one-stop shop in Edinburgh has already been established, and I had the pleasure of opening the one-stop shop in Glasgow a few weeks ago. There is one in Fife, and the Lanarkshire one opened on 8 March. Other one-stop shops are being planned for Grampian, Highlands, Tayside and Ayrshire. The Highlands shop will open very soon and the others will open later in the spring.
We have also been providing support to research areas to increase our understanding of autism. I am keen to see progress in research into waiting times for people who are waiting for a diagnosis, and we are providing funding to assist the progress of that research.
Mark McDonald referred to the fact that I have asked the national ASD reference group to look at the recommendations in the “Count us in: it pays to listen” report to see how we can implement them as part of the delivery of our autism strategy. Since its launch, the strategy has started to make a difference, but I recognise that much more remains to be done in the area. Working along with our partners in the third sector and local government, and with those who have autism and their families, we can continue to make progress. The Government is committed to implementing its strategy in the coming years and delivering the change that many individuals are looking for.
Meeting closed at 17:42.