Scottish Strategy for Autism
The next item on the agenda is a one-off evidence session on the Scottish strategy for autism. I welcome to the meeting Richard Ibbotson, who is the national director in Scotland of Autism Initiatives; Alan Somerville, who is the chief executive of Scottish Autism; and Dr Robert Moffat, who is the national director for the National Autistic Society Scotland.
Mark McDonald will ask the first question; I am open to bids from members for subsequent questions.
Thank you, convener. Members will be aware of my personal interest in the subject.
How has the autism strategy influenced or affected local service delivery? Are its aims percolating into delivery at local authority and health board levels?
Dr Robert Moffat (National Autistic Society Scotland)
It is possibly too early to make the concrete statement that definite measurable effects are percolating through. There is no doubt that much that is positive has come from the strategy, and obviously we have the Government’s commitment to implementing the strategy, the funding, the establishment of one-stop shops and so on.
An important piece of work is the on-going mapping exercise of local services and service delivery, on which data have been gathered and are about to be analysed. When, in a couple of months, a picture emerges from those data, we will be able to answer the question more fully.
There is also the proposed roll-out of autism co-ordinators across the country, but—once again—we will be able to make a concrete judgment on that measure only when the co-ordinators come into being. All the pieces more or less exist, and we are now ready to press the “go” button.
As for whether the strategy is making a difference at local level, the development fund has funded a raft of local initiatives throughout Scotland and the feedback that we are getting suggests that they are having the desired effect. However, because of the factors that I have described, it is still a bit too early to say anything about the national picture.
Alan Somerville (Scottish Autism)
I tend to agree with Dr Moffat that it is slightly too early to answer the question. I am, however, pretty upbeat about the situation; so far, we have had a good combination of strategic project work and thinking about the future. Dr Moffat mentioned the raft of local measures, but I should also highlight measures for the future, including the database and screening project that is under way to identify people earlier and to review ways of identifying autism earlier.
My organisation has also championed the microsegmentation project, which is being run jointly by Professor Tommy MacKay of the University of Strathclyde and Professor Martin Knapp of the London School of Economics. The project, which is one of the most important around, will identify the escapable costs of autism. We must remember that autism rarely occurs alone, but comes with a plethora of co-morbid conditions. No one has ever mapped the concentrations, the populations and the demographics of those conditions, which define the individual and demonstrate why a personalised agenda is so important. We expect that when the project delivers its findings in 18 months, we will have a kind of map of the populations with co-morbid conditions.
Professor MacKay will examine life trajectories with and without appropriate interventions, and Professor Knapp, who carried out for the National Audit Office in England the major study that identified the total costs of autism, will put together a lot of clever statistics and, I hope, come up with the escapable costs. The Cabinet Secretary for Health and Wellbeing will for the first time in Scotland have a logical decision-making base and an understanding of what works, what does not work and what will produce the quickest return.
Through those strategic projects—Robert Moffat also mentioned the mapping project—a lot of groundwork has been done. Scotland was probably last out of the home nations three years ago; now I think that we are in the lead. We could be world leaders in five years, given the work that is going on. I am excited about that.
There is one negative point to make. One of the most important things in the strategy was recognition that we had to do something to improve the quality of life of people with autism, rather than just maintain physiological survival. Those are fine words, but I regret to say that that aim is being undermined at the point of delivery in local authorities. No one can deny the financial constraints that local authorities are under, but they are now setting maximum prices per hour for service delivery, which precludes the specialist help that people with autism need. In my humble opinion, that way lies a Mid Staffordshire NHS Foundation Trust situation, with care being given by minimum-wage support workers who have not had the training and education to deliver what is needed.
The picture is good and bad. At the high level, the words are fine. A lot of strategic work is being done, but it is being undermined, at the point of delivery, by cost-cutting.
Richard Ibbotson (Autism Initiatives)
I would echo what my colleagues have said. The money that has been attached to the strategy has been used in a good way, in that there are a number of good local initiatives. That is great if you happen to be a person who will benefit from one of those projects.
There are also the national developments such as the mapping project, the roll-out of the one-stop shops, and some of the research that is going on. It is possibly too early to say whether those national developments have had specific local impacts, but they are likely to do so in the long term, so the balance is positive.
Another positive aspect of the developments over the past year has been the partnership working that has evolved between the Government, the Convention of Scottish Local Authorities and the three autism organisations. That has been a positive step that has been guided and aided by the autism reference group.
We are talking about a national autism strategy, but its implementation at local level will be key to answering the question, “What are its effects at local level?” We are in a pre-implementation phase; it is just over a year since the strategy was launched. A lot of preparatory work has been done, all the pieces are there, and it is ready to go. The key is to ensure, for example, that all local authorities fully embrace the idea of developing and implementing autism strategies, so that we have a joined-up picture from national level right down to local level.
Currently, there are difficulties in implementation of that local action that are related to the fact that many local authorities are—quite understandably—not willing to start developing local strategies because it makes more sense to wait until the mapping project reports and gives the national picture on services. We need to take various matters into consideration, but we also need to keep our eye on the notion that, as the next year evolves, we need local authorities to fully embrace the strategy and bring about change at local level.
I am aware that other members want to come in, convener, but can I ask one further question?
Certainly.
An issue that is often raised with me at events—I was recently at an autism conference in Aberdeenshire at which it was raised again—is around the transition between children’s and adult services. There is a feeling that autism is, at local level, viewed as a priority in the early years but less so in adult services. Will the strategy help to change that perception, or is more work needed beyond the strategy to ensure that adults with autism, or children with autism who are becoming adults, can be sure that the pathway and continued care and support will be there?
10:00
Remember that the strategy has two-year, five-year and 10-year goals. Not surprisingly, the 10-year goals are the really hard ones. Autism is complex and multidimensional and there are interfaces with many different parts of the state. Education tends to look at the education of a child and the NHS tends to look at mental health and so on. Individuals who pass between organs of the state always encounter difficulty because they are crossing walls, budgets and responsibilities.
The current Administration is integrating health and social care, which is part of that long-term picture. We in the reference group are considering how our workstreams do not join up and what gaps will need to be filled in order to deliver the goals. Smooth transitions—first, in a person’s lifetime, and later on between different organs or services of the state—are the hard goals. We said that we would have 10-year goals for the harder things partly because they cannot be done overnight. That will need sustained pressure and support from the Parliament. It is quite daunting and it will take a gigantic amount of work to get that to go, but the prize would be enormous because there is misery among people who get to 18 and are suddenly out on the street.
A difference is that, whether or not you have autism, you have a right to education, but you do not have the right to support services as an adult; you cross a Rubicon when you become an adult. Those are the complex things. We need the state to recognise the individual and not the dimension of them that interfaces with that particular function of the state, and that is hard.
There is a mechanism in the strategy to ensure that we have a good and effective transition. It is covered in recommendation 18 of the autism strategy, which states:
“It is recommended that good practice transition guidance is developed, building on from existing educational guidance”.
However, we must be careful that that is embraced whole-heartedly and rolled out across the country, and that we do not end up with what we have at the moment, which is the oft-cited postcode lottery. There must be a good transition from school into other life opportunities and it must be consistent across the country.
Yesterday, I was speaking to National Autistic Society colleagues who support people into employment. They told me that a group that they are concerned about is young people with autism aged between 16 and 25. Their opinion is that, without proper transition guidance and willingness among employers to understand autism and to provide employment opportunities for that age group, the risk is that they will be a lost generation whose members will soon become 40-year-olds who have never worked. In such cases, it is essential to have good transition guidance. As I said, the mechanism exists and we need to keep our eye on the ball and ensure that provision is consistent across the country.
I agree with Dr Moffat that transitions will always be difficult stages of people’s lives—particularly the transition from education and childhood into adulthood and the world of work. If there are no options to transition to, that is inevitably when challenges will occur. I anticipate that—without predicting what will come up—the mapping project will help. Transitions will be a key theme that comes out of that and how autism co-ordination could seek to address some of the issues.
I am aware that I am doing that Columbo thing in saying, “Just one more thing.”
Obviously, the NAS has launched the “Count us in: it pays to listen” report. I will be leading—this is a cheap plug—a members’ debate on that this evening. It looks at what I would call the next stage, which is employment. We should not lose sight of the fact that although local services at authority and health board levels have roles to play in ensuring that people with autism who wish to gain and sustain employment are able to do so, private sector employers also have a role. As well as the strategy’s aims, is enough interest being generated outside the public sector about autism to ensure that we can have, for example, autism-friendly workplaces?
I am sure that my colleagues would agree with me that, for all the strategy’s virtues and all the good work in the pre-implementation phase, employment is one of the strategy’s weaknesses. It is weak on it specifically because it is covered by only one recommendation, the wording of which is—in my opinion—completely inappropriate for people with autism. Supported employment frameworks are not an appropriate way of guiding people with autism into work, so I believe that recommendation 26 needs to be revisited, because although it is the only mechanism in the strategy that addresses employment, it is not fit for purpose.
My colleagues in NAS’s prospects employment support service tell me that three key cohorts must be considered: people with autism who are graduates; people aged 25-plus who are not graduates; and the original cohort of which I spoke, which is the 16 to 25-year-olds. The service is having great success in placing graduates in blue-chip and corporate working environments. In fact, demand far outstrips supply and we do not have the capacity for getting everybody we want through the programmes. The graduate side of employment is therefore a hopeful scenario, bar the issues around resources.
For those aged 25-plus who do not have a degree and for the 16 to 25-year-olds, however, there is a real danger that they will never work unless we do something to focus the national strategy more firmly on the employment needs of people with autism.
Another workstream that the Government has funded is the Scottish autism network. It has a working group, on which we all sit, that is looking at employability. A lot of the issues that Robert Moffat has just mentioned were discussed last week, which shows that the problem is well understood. However, sorting it out is harder.
I chair the reference group sub-group on employment. Although only one recommendation mentions employment and it is fairly weak, there is good momentum and a group of people are trying to instil and develop other aspects of the strategy that might not talk overtly about autism, but talk about people’s progress, development and skills.
It is difficult to engage with employers as a group. That is not helped sometimes by the media coverage that autism still gets. Typically, people with autism are referred to in the media as “suffering from” autism, or it is seen as a childhood disorder, and not an adult disorder. It is hard for us and for the strategy to influence media coverage of people with autism and the view of them in the community, but that is an important strand that we need to address.
Absolutely—which is why, for the report “Count us in: it pays to listen”, the National Autistic Society Scotland went out and asked people with autism across the country what would make a real difference in their lives. Employment was one of the biggies; everyone wants a job, and people with autism are no different from you or me, in that regard. That is why there is a recommendation in the “Count us in” report that we should have an employment champion to address the sort of problems that Richard Ibbotson has just spoken about with regard to employer perceptions of employing people with autism. In many ways, they make the most fabulous employees, but because of lack of awareness among employers of that, there is a risk of those people disappearing into a black hole.
It is about shifting emphasis from the perception of people with autism as being a problem that needs to be solved, to looking at people with autism as having a positive contribution to offer Scotland.
It is with a slight degree of trepidation that I ask this question. I will provide a context for it. Some service reform is taking place in Glasgow for the specific group of people with learning disabilities. I genuinely do not want to get into the politics around that. I have a very specific view on that, which has been made public in the region that I represent. One of the issues with the service changes is the feeling that people who have learning disabilities were not appropriately consulted on shaping the services that exist for them. We need to get the balance right between the idea of community and the aspirations of individuals.
You mentioned that some people with autism have multimorbidity, so there is a cohort whose autism, or the other morbidities that they have to live with, will have a more profound impact on them as individuals and on their families and carers. We are rolling out self-directed support so that people with additional support needs and care needs will be better supported and empowered to decide and shape how they want their lives to progress in the community. For those whose autism or other morbidities have a more profound impact on their lives, what work is there in the strategy—and how is it being progressed—to ensure that they and their families can shape their support and services under the principles of self-directed support?
I said that I have a slight degree of trepidation because I am not sure what support is out there, or even whether I have used the appropriate terminology in asking my question. I have met a number of my constituents who have autism, but autism is not the biggest barrier in their lives—they have other underlying issues. Are they still a central part of the national autism strategy?
We have tackled that issue by ensuring that the strategy contains phrases that state that services should be appropriate to people’s specific needs. There is a commitment to personalisation, which I think is more important in the world of autism than it is in almost any other field because of the sheer bewildering complexity; we are dealing with a map of the world that is the size of the world. Everybody is different, so the more able we are to deconstruct a person’s autism and understand the various components, the better we will be at designing services.
The great danger lies in offering people frameworks that just do not fit. Accepting and embracing a personalisation agenda for each individual is the key to getting round that problem.
When I first started working in the world of autism 10 years ago, many local authorities throughout Scotland had local autism steering groups that were populated by a wide range of interested parties, including professionals, parents and people with autism. The purpose of those groups was largely to look at whether local provision was meeting local need, and to ensure that the professionals were fully clued up on the views and needs of people with autism.
Do not ask me why, but in the course of a few years practically every one of those groups has just evaporated and disappeared. I can think of only one local authority that regularly holds meetings of such a group at present. That implies once again—in answer to Bob Doris’s question—that there is a fair amount to do with regard to how work is carried out at local level. We fully expect that, if we eventually have local autism strategies, people with autism would—regardless of the challenges that they face, the co-morbidities that they experience and their needs—be invited to be part of that process as full members in order to guide local service provision. Local groups would be one way in which we could ensure that that happens.
All too often, in our haste to do the right thing, we tend to do something for people without asking whether it is the right approach. Our mindset needs to focus on going out and asking people, and getting them involved in the decision-making process.
The drive towards personalising services is not alien to those of us who work with people with autism, because they are so unique and so different from each other that they almost demand a personalised and individualised approach.
The three organisations that are represented here today are involved in a small project that is funded through the self-directed support fund. We are developing a range of information and resources that are designed to support people on the spectrum who are going through the SDS process.
10:15
I suppose that that is what I am keen to find out about. I am speaking in general terms because I do not know enough about it, but is it a question of people having to fit into a framework or is it possible to have a framework that adapts to the hopes, needs and aspirations of those with autism and their families and ensures that there is bespoke support for those with more profound co-morbidity challenges?
There might be a local autism framework and a number of recommended services out there for individuals, but someone might say, “That’s not an appropriate service for me. Can I direct the resource? I want to use the resource to support myself at a further education college.” Alternatively, they might want to use it for support in employment or another purpose. Should that be possible and happening as a matter of course under the principles of self-directed support?
Yes.
Yes. The principles behind self-directed support fit well with autism because of its individuality. Our concern is that, often, it is not easy to identify the needs of people with autism; picking up their support needs is sometimes quite complicated.
There can be a trap. The first pass at self-directed support in Glasgow, which was mentioned earlier, excluded people with autism who did not have a learning disability. The high-functioning people with Asperger’s whom Robert Moffat talked about, who are employable, got no support at all under that scenario.
That is why I keep coming back to the goals. They are woolly, big and overarching, but they allow us to look at what is right for the individual rather than thinking about fitting them into a framework. That is difficult from a local government perspective, because local authorities have to design services that are fair, accessible and understood by people. That shows the sheer complexity of the issue, because a degree of flexibility and a degree of personalisation are required before they can do that. The message that I want to leave with the committee is that we cannot have a rigid framework because people will fall between two stools.
I will not be drawn on Glasgow. Needless to say, I have almost no positive words to say about how self-directed support has been implemented and in some circumstances imposed there, which seems to go against the principles, but I will leave that sitting. I am more concerned to look at how the national autism strategy is being rolled out across the country, in every local authority area.
I think that I know the answer to this question, but just to put it on the record, if a local authority brings forward a local autism strategy in conjunction with the health board and other partners, is the first thing that they should do to speak to those with autism and their families to find out what their hopes, needs and desires are before they start to develop a draft framework?
Yes—absolutely.
Is that happening across the country?
We need the mapping exercise that Robert Moffat mentioned. We need to start with what is actually happening out there, and we then need to think about where the gaps are and put them in the context of the goals. No business in the world will succeed if it does not listen to its customers. That is a fundamental, basic thing to do.
Some of my questions have been answered. However, I want to ask about the post-diagnosis support that is given to individuals with autism and their families. Is it fair to say that that support is patchy across the country and is not yet adequate?
Yes.
Yes.
Yes. It is interesting to think about the health service. If you go to your doctor and say, “I’m having pains in my chest,” if he thinks that you might have cardiac problems, he will send you to a consultant, you will have all the tests done and you will get a letter through the door saying that you should attend such-and-such a hospital on such-and-such a day. You will be processed and eventually—hopefully—you will be back on the street, cured.
If you have a diagnosis of autism, there is nothing. You have to go and find an assessment, and the local authority has to provide funding—there are all sorts of discontinuities. It just does not happen. I have often said that the parents of the children at our school are determined individuals. They have fought and clawed and got their way through the barriers to get to where they are and to get their child placed in an autism-specific school. No mice get through that. That is a measure of how hard it is. The state does not do it automatically.
I remember from when I first became an MSP almost 10 years ago going to a local meeting up in Aberdeenshire, and you are right: the parents there were extremely determined and were working very hard to get what they felt their children needed. I have not heard so much from them in recent years. That might be a sign of things having improved, I suspect—otherwise, I would probably still be hearing from them.
However, we have had some representations. I am not a member of the cross-party group on human rights, but a presentation was made to it by people from Autism Rights, which, from a brief reading of its presentation, does not seem to be at all happy, particularly about people with autism being included under mental health legislation.
There is a particular issue around able adults who have had a particularly late diagnosis in adulthood, which often leads to a void—to nothing. However, where one-stop-shop initiatives are happening and have happened, there is at least something that becomes almost a post-diagnostic point of information and advice, even though it is sometimes difficult to provide and signpost on if there is nothing to signpost on to. However, at least there are points of contact.
One positive aspect of the strategy is the recognition that we need to investigate the capacity to diagnose adults. There are a huge number of undiagnosed adults, many of whom will be struggling. It is positive that a project has been set up, under Iain McClure, to consider that.
I offer a note of caution. We could easily fall into a trap whereby we address the problem of diagnosis but, at the point of post-diagnostic support, nothing happens. That is a nightmare scenario for people. We spoke to people for the “Count us in” report, and that was one of the points that was made. People told us four basic things that they wanted. I have already spoken about employment, and diagnosis was something else that people said would make a tremendous difference to their lives. More importantly, they wanted a post-diagnostic pathway to be developed.
Alan Somerville alluded to the example of people with a heart condition, which is a medical condition. We can easily construct post-diagnostic pathways for people with those sorts of conditions, so why not for people with autism? The danger is that we just diagnose them and then they fall into a black hole. We have recommended increased capacity to diagnose, the development of consistent post-diagnostic care pathways that are applicable across Scotland and the application of a health improvement, efficiency and governance, access and treatment target—a HEAT target—to ensure that everybody who needs access to care gets it.
Is there anything for autism like a guideline from the Scottish intercollegiate guidelines network? There are SIGN guidelines in the health service for different conditions—is there anything like that for autism? It strikes me that something like that might lay down guidance for how to proceed after diagnosis.
That already exists, and some work is being done to consider the relevance of that for people with autism. There are some questions surrounding that. As Richard Ibbotson said, it is all very well diagnosing people, but if there is nowhere to point them to so that they can complete the path to leading a fulfilled, meaningful life and being able to cope with their condition, that does people a great disservice. That is why we need not only to increase the capacity to diagnose but to develop good, solid post-diagnostic care pathways. We must also measure the results in order to prove that people are actually getting access to that care.
As was the case with my colleague Nanette Milne, many of the questions that I wanted to ask have already been answered, but I wish to return to a point that Dr Moffat made earlier when he was speaking about the partnership working between the Scottish Government and COSLA. You saw that as a positive step forward, Dr Moffat, which was guided and aided by the reference group. How is that partnership working in practice at the moment?
In practical terms, we meet regularly as a partnership, primarily to oversee the three projects for which the five partners are jointly responsible: the implementation of the one-stop shops, the mapping project and the self-directed support project that Richard Ibbotson mentioned. We meet monthly to push that work forward. That is working successfully at the moment.
That is the good side. The last of the two-year goals is about adherence to existing commissioning guidelines by local authorities. When the mapping project reports, we will see the arguments out in the open. Like the curate’s egg, it is good in parts. Some people embrace the philosophy entirely and others pursue a cost-cutting agenda that is at odds with the words in the strategy. The mapping exercise will shine a bright light on where commissioning guidelines are being followed and where they are not.
You have talked a lot about how we can ensure that there is post-diagnostic support for families and individuals, but I wonder about the support that is given to families in getting the diagnosis in the first place.
Most children with autism are first diagnosed when they encounter the education system. Another project with which the Government has entrusted my organisation is on revamping the autism toolbox for schools, which is an important measure. All three of our organisations have spent a lot of time lobbying for general education on autism among health, social care and education practitioners to be improved. That is a useful tool, as it gives a lot of bang for the buck.
However, we all have an enormous amount of work to do. I have attended conferences on police work, and all three of our organisations have produced alert cards to help policemen to understand what they are dealing with. That is a gigantic task, because we are asking people who are already doing busy and difficult jobs to absorb a whole new ethos and way of looking at people in trying to understand why they do what they do. That is a kind of large-scale marketing effort. The more we do it and the more we progress towards the goals, the more professionals will understand what we are trying to do.
There is no denying that we have made giant strides in the diagnosis of children. I cannot remember the exact figures off the top of my head, but in the region of 7,000 children have been diagnosed, and we would expect there to be 8,000 or 9,000. However, as has been said many times, the real challenge remains, which is that, epidemiologically, we would expect there to be 42,000 adults with autism out there, but only 2,700 have been diagnosed. So the issue is not so much about supporting parents to get a diagnosis for their children—although there are still problems with that—and more about the hidden population of adults. Not all of them will need support, but we are talking about 40,000 invisible people, 20,000 of whom are struggling desperately, which is a big problem for the country.
As I say, the picture for children is much better. I do not want to be too negative, but we still come across parents who say that they are struggling to get a school to take their concerns seriously. The school has told them that they will get support and that it is nothing to do with a diagnosis because everything is needs based. However, the child is still not getting support, so the parents want a diagnosis. Once again, there is a slight postcode lottery, but the picture has improved dramatically for children; it is the adults whom we really need to be deeply concerned about.
That point about adults is what I was trying to get at. Thank you.
10:30
To return to the issue of employment, I am interested in the extent to which the problem is discrimination among employers—their views about autistic people and employing autistic people—and the support that people might need to gain employment. Could you say more about the balance between your concerns on those two points?
Thinking about other groups that are discriminated against in the workplace and in the labour market, we see that there is a role for the state in promoting positive images of autistic people and showing employers how they can support such people. What is the balance between the positive images that we have of autistic people in society as a whole and in the workplace? Are we doing enough?
If the answer to my first point is that you are more concerned about the support that is available for autistic people than about the views of employers, can you give some sense of the priorities in that area?
Each of the points that you make is an area of potential priority. When I speak to people, what comes back loud and clear is that they have no confidence in the ability of society as a whole to understand autism. People with autism still experience bullying and discrimination and their opinion is that that happens because society as a whole simply does not understand the condition well enough. Part of our organisations’ raison d’être is to ensure that we get that information out there, but we are only small organisations.
In my opinion, what is really needed is some form of national awareness or information campaign to address that imbalance in society at large. We want the people whom we meet in supermarkets, pubs and leisure centres to understand autism, in order to minimise the problems and to allow people with autism to access, for example, the same kinds of social and leisure opportunities that we all take for granted.
On employment, the reality is that we usually find that the types of modifications that are needed in the workforce end up being minimal, particularly for people with autism who are—for want of a better expression—more able, for example people with a diagnosis of Asperger’s syndrome. Employing people with autism is not rocket science or a huge imposition on employers; it is just about knowing what autism is and making common-sense modifications and small incremental changes in the workplace. We find that by doing that, people with autism not only fit in well in the workplace but excel.
To come to the third point that you made, where that all falls down is in employers’ perceptions. Once again, that is due to the lack of clarity in the general population about what autism is. We often feel that employers think, “This is going to be a huge burden on me economically,” “This will turn the workplace upside down” or “I will have to do this, that and the other.” However, as I said, in the end often only very small modifications are needed.
As Richard Ibbotson alluded to, employers also do not understand the benefits of employing people with autism. They can be ideal employees who are diligent; focused; have fantastic attention to detail; do not tend to get bogged down in office politics or backstabbing; do not waste time or gossip; get on with the job; and pride themselves on doing a fantastic job. Those are the qualities that everyone would want in an employee, but we need to get that message out there.
That is what we try to do and at times it is an uphill struggle, but we are getting there gradually. I mentioned the graduate programme that we run, which is turning out to be a fantastic success. We are placing graduates in blue-chip companies and demand is far outstripping supply. Employment for people with autism is not an unsolvable problem but it is a two-fold problem involving society’s perceptions of autism and, on a sub-level, the perceptions of employers, which we could do something about quite easily.
We want to encourage the concept of employment in its widest context. The point is not necessarily just to work with employers so that they take on more people with autism; it is to consider employment in as wide a context as possible.
It is good that the development fund projects that are linked to employment cover a wide range of activities, right from a project on supported self-employment at one end of the spectrum through to other projects that are about support for people in existing employment. There are also initiatives about creating employment opportunities for people who, certainly in the short term, will not fit into the workplace. They are about creating workplaces around the skills and potential of each individual.
We would argue for such a wide range of employment solutions. The development fund is picking that up in pockets.
In summary, both of us are saying that greater awareness is needed but, principally, there needs to be more of a focus on employment in the current strategy.
That is helpful.
I come back to parents. There is a fairly broad understanding of all the challenges that parents face with diagnosis and in raising concerns. We refer to parents of autistic children as having to fight for the services that their children need. I hope that we have started to address some of that and I think that you are saying that that is beginning to improve.
However, what about the parents of adults with autism, who are exactly the same people who had to fight for those things in earlier life and are now trying to support an adult? They, as older people, or a sibling may be supporting someone who is not able to find employment or has challenges around employment. Are there specific issues for that group of families and others that are affected by autism or are around people with autism? Could we do more to help them?
Yes.
I do not want to pour cold water on things, but there are a large number of able, young, neurotypical people who are unemployed. Under those circumstances, it will be difficult. We cannot just create jobs.
I agree that there must be a great deal more education in the workplace on relatively simple things, such as predictable hours and not having people with autism exposed to random telephone calls that throw them off their stride. It is about quite simple things, if we can get people to do them.
However, in the cold light of day, why would someone take on those risks when 100 other people are available for whom they would not have to take on those risks? That is a severe challenge. The answer to it—it is a bit utopian—is to drive down unemployment generally. If we do that, we will drive down unemployment among people with autism.
I am not sure about that. A few short years ago, we were in a period of boom. We are now in a period of austerity, but the numbers of people with autism who are unemployed have been identical during those two periods. It does not really matter whether all the jobs in the world are available or employment prospects are bleak; somehow or other, we still end up with a figure of 85 per cent of people with autism being unemployed.
I disagree, because it does not matter whether there are five people ahead of you in the queue or 1 million people ahead of you in the queue, there are still people ahead of you in the queue.
Employers face additional problems. Major employers have to look to the future. If they have somebody who does not fit with their working strategy, it is very difficult to get rid of them. There are tribunals going on all over the place. I am speaking realistically about what will happen if an employer is faced with the prospect of having someone with any form of disablement. It is near impossible for them to get rid of such a person if they do not want to keep them.
Those are the real circumstances in the real world. I do not think that it is about discrimination against people with autism as much as it is about why an employer, with all the other troubles that they have, would take on the additional risk.
Once again, that goes back to what I have said. I firmly believe that huge numbers of people with autism make ideal employees due to the characteristics that I have already outlined. It is not down to unemployability; principally, it is down to employer perceptions. If they knew that people with autism made ideal employees, they would tap into that resource.
On the question about what can be done for adults who are living with aging parents, there is a wider issue. It is about not just employment, although employment makes a tremendous difference to people’s lives, but ensuring that such adults are not prisoners in their own homes, never going past the front door, and that they are not financially, emotionally and physically dependent on their parents—it is about ensuring that their parents are not their only friends in the world. The issue is bigger than employment; it is about putting in place initiatives that ensure that adults can have the confidence to go out and access leisure opportunities, pursue hobbies, meet people, form circles of friends and do the range of things that make up an ordinary life such as we all lead. Such things are ignored. The issue is bigger than employment; it is life itself.
I agree with Robert Moffat. I work with PASDA—Parents of Autistic Spectrum Disorder Adults—which is a group of parents of adults with autism who live in and around the Lothians. Their big concerns are the things that we have been talking about: employment, housing and so on. They want to avoid crises by planning ahead for the transition to life beyond the family home.
I mentioned the microsegmentation project, part of which involves looking at different domains of quality of life. The spectrum encompasses a huge range of people, from those who require 24/7 care to the able people whom Robert Moffat talked about, who could easily hold down a technical job. There are different domains of quality of life for people in different segments, and we need to consider the overall balance in relation to leisure participation, inclusion in society and everything else.
There is no single measure, but the more that we understand about the different segments, the better we can approximate an understanding of what is required. I again sing the praises of the Government’s strategy document, because it has put in place the strategic work that is needed in that regard.
I have a question about the careers guidance that is available to autistic people who are leaving school and thinking about going on to college or whatever is appropriate for them. In my experience of autistic people, including in my family, the approach in the past has been to tell people what sort of things they can do, often on the basis of fairly settled views about all the things that they cannot do. The question is then whether the choice is genuinely the individual’s. Has the approach changed? Is there more that we could do? How does the strategy deal with the issue?
I talked to a careers guidance professional six months ago, who explained that quite some time ago, tailored, specialist careers guidance—for want of a better expression—in schools was gradually eroded, and a more generic approach is in place. From his description of the new approach, I knew that it would do young people with autism no good whatever.
It might surprise you to hear me say that for young people with autism it is often a question of self-knowledge and having a realistic grasp on what is and is not possible. Someone with autism might open up the Glasgow Herald recruitment pages and say, “Oh, I can do every job here.” Another young person with autism might say, “I couldn’t possibly do any of those jobs.” You and I know ourselves; we know our skill set, so we can tailor our job searches realistically, whereas for young people with autism there is often no self-knowledge, self-awareness or understanding of their skills and abilities and strengths and weaknesses; therefore, people can have unrealistic or utterly pessimistic perceptions of their prospects.
Such things can be tackled, but certainly not by a quick generic chat with someone in a room in a school. A little extra effort is required to ensure that people are set on the right path.
10:45
Sometimes, the issue is a lack of appropriate options for people to move on to. I know that the funding situation facing many of Scotland’s colleges has meant that a number of part-time and distance learning courses have been cut, which are often the courses that people with autism or people with learning disabilities would have accessed. That has had an impact on people with autism.
I will pick up on that, because I have an interest in further education and the role that my local college plays in supporting—in the broadest sense—vulnerable adults, who I am confident will include some of the people whom you represent.
I am very concerned about the focus on employability outcomes for 16 to 24-year-olds and the cutback in courses that Richard Ibbotson described. Indeed, there is anecdotal evidence that some local colleges, as they are coming together, are analysing and doing a head count of the number of people who fall into the vulnerable category. Some vulnerable adults have been attending college for 20 years. I am very concerned about the transition. Have you raised such concerns? What concerns have you raised? After the formal education system, as far as I am aware, such people do not have a right to further education. College has become a support for those people—and their families—in giving them somewhere to go every day; it is not necessarily about getting outcomes. Some of those people have been almost institutionalised in the college system for 20 years. From a constituency point of view, I am concerned about what will happen if they are affected by the squeeze and are pushed back out into the community.
I can accept the colleges saying that that is not what colleges are for, but how do we manage that transition? Have you raised that with them?
Yes. I think that we are all aware of examples of such situations. With the reduction in the traditional day service-type facility, many people have ended up in college for years and years.
The reference group’s sub-group on employment includes a representative from Scotland’s Colleges who, at our most recent meeting, reflected—this is my take on it—on how the colleges were in a way returning to their original focus, which was the development of specific skills and specific areas of skill, with the result that courses were being cut for people who perhaps should not have been at college but who were there because there were no alternatives. We are again in the situation in which there are no alternatives for some people.
Again, looking at the bigger picture, part of what we are trying to do with the 10-year goals is to stop people being chucked over the wall into someone else’s budget. The state needs to look at all aspects of the individual. Getting someone out of mental health care, for example, by warehousing them in a college is wasteful for Scotland plc. That is what the longer-term goals are about, and it is part of what Professor MacKay is looking at in his lifetime trajectories.
We could all give you examples of service users in our organisations who have been passed among different organs of the state, particularly in health and social care. It is an extremely difficult problem, which is being addressed by the current Administration.
At this stage, do we know how many people we are talking about? I am aware of the longer-term objectives of the strategy, but given that radical changes are taking place in the sector, I am worried that the people concerned might be getting pushed out. They cannot wait for the strategy.
I keep coming back to the project to map the populations and understand the issue. Robert Moffat used the figure of 20,000. We do not really know how many adults out there would benefit from support. We need to get a grip on understanding the comorbid conditions, the relevant populations and the effect on the state.
There are many other examples: there are people in jail—
Why do you not know the number of people who are being supported in colleges?
Because only a small number of people with autism have presented to the state with an issue.
Are you just interested in—
I am interested in understanding the whole picture. In the past, local authorities have conducted surveys in their areas and national health service authorities have conducted studies that were to do with schizophrenia or other conditions, but there has never been a big snapshot of the whole thing or an attempt to stitch things together.
That is why we need Martin Knapp of the London School of Economics to do the complex statistical analysis that is required. I have great hopes for that. The way that I like to put it is that, although we will not have a global positioning system map of Scotland, we will have an idea of where Australia is.
The level of understanding will involve knowing that there are knots of population and clumps of conditions—the spectrum is not homogeneous. The money can be better targeted when we understand that people could be transitioned into employment—they tend to be the higher-functioning people—and that we could get people out of the health service. Understanding an individual’s whole needs is the key.
Are we back to Dr Moffat’s scenario? It is all very well identifying and diagnosing conditions, but having all that information does not solve college budget problems or local government budget problems and it does not necessarily equal action.
The reason why we started the current programme is that having someone in prison or in mental health care is vastly more expensive than having them in the community. Subsets of the population are involved. If the major costs were identified at the higher-functioning end of the spectrum, that would make an economic case—not a social case—for doing the work properly.
The question that the convener asks is quite difficult for a variety of reasons, one of which is the unknown numbers. In reflecting on your question, I thought that one explanation for starters might simply be that colleges lack appropriate courses. Another issue, which I have raised, is the lack of guidance when people are leaving school, choosing the courses that they will do and thinking about where that will lead them. It is well understood that people with autism find it incredibly difficult to understand their condition and self-advocate for what they want. A form of advocacy that goes beyond careers guidance is perhaps needed.
I return to the lack of courses. In an ideal world, we would have a range of courses that suited young people with autism, all the way from courses in basic life skills to vocational studies, apprenticeships, diploma-level qualifications and degrees. A range of courses, most of which were in colleges, would exist.
I do not know whether I am answering the question. All the factors that I have just mentioned are causing a problem; the issue is perhaps not just college budgets.
The issue is to do with college budgets. The people whom colleges are setting out to attract must have good employment outcomes, which the people whom you represent will not have. As a consequence, I am concerned that those people will become less of a priority. The strategy is about employability, and people with autism do not fit the model. That is a constituency issue.
The committee is connecting up some of the work in this session. Last week’s one-off session on stress and trauma was good; it fitted in with other issues that we are dealing with, such as health inequalities, self-directed support and the integration of health and social care.
I was particularly interested in Mr Somerville’s opening remarks. We made strong recommendations about the care of older people, which would apply to any care that is provided—normally by a local authority. There is the whole question of the procurement process, low wages, the driving down of carers’ wages, and the training of the new workforce that we will need in order to deliver a personalised care service. What representations have you made with regard to that issue?
On the driving down of costs?
Yes.
Funnily enough, I wrote to the minister about it two weeks ago. We have a particular example at the moment. Our largest local authority customer has set a maximum rate. The principle is that 70 per cent of procurement should be based on quality and 30 per cent on price, but a maximum rate eliminates the quality providers, which rather subverts the system. I see it happening all over the place. We have major problems and what could happen is a dumbing-down of specialist services until they are no better than generic, basic, physiological care, and the assets and the knowledge of autism-specific providers and other specific providers are lost. The situation is critical.
I was talking to a colleague yesterday in preparation for today’s committee. She works with a wide range of local authorities and what she was saying chimes exactly with what Alan Somerville just said. The specific example that she gave was that people who require support packages quite often require some form of short-term intervention, such as psychological services or speech and language therapy, but local authorities that have their eye on their finances are simply claiming that those are gold-plated services and they will not pay for such short-term interventions. In our opinion, such interventions are crucial to the successful outcome of the support package, not gold-plated add-ons. We set ourselves up for failure if we do not recognise that that type of support service is necessary.
We are under that kind of pressure all the time. Once again, it relates to the lack of understanding of autism and how the problem can be tackled.
Ultimately, we can put a short-term sticking plaster over the individual’s immediate symptoms. I am told that large numbers of people in the country are diagnosed with schizophrenia but the autism that is at the root of that condition is never addressed. The individual’s immediate symptoms are considered but not their cause.
Another good example is the high representation of people on the spectrum in the prison population. It is enormously higher than in the general population. That indicates to me that something is badly wrong.
There is no controlling mind—“controlling” is a difficult word. What I mean to say is that no one is analysing the trajectories of individuals, so people end up having life crises and failures that are much more expensive for the state to address than would have been the case if it had been done right first time. That is the critical argument.
We have worked hard on getting those principles into the strategy, but it cannot be changed overnight. Going back to Robert Moffat’s remarks, we have made a good start, but it is too early to tell whether we are going to win.
The message that we all try to get out regularly is that providing an individual with the right support at the right time has significant long-term impact. That message is hard to get over.
I have been working for Scottish Autism for four years; I came from a completely different background. I have looked at how service users found their way to our service, and the market has had an effect. My service users tend to be at the more disabled end of the spectrum because we are more expensive, and we are more expensive because we have a higher degree of expertise than a lot of other services in those specific areas. We have to invest in knowledge management, training, conferences and a number of other areas that are more expensive than basic services.
There is another effect. We tend to find that, in commissioning, autism is lumped in with a lot of other disabilities. Autism might be only 10 per cent of the total package when a number of providers tender for services, and because we do not cover the other 90 per cent, we do not win the tender. These complex individuals then go into inappropriate services that fail and their lives go to hell in a handbasket. We then get new service users through a re-tendering process because the previous process failed. That is really bad. Apart from the fact that it is inefficient for the health service, it is hell on earth for those individuals. They will have had two or three years of family disruption and will, in many cases, have suffered great distress before finding what they really need. It goes back to what Robert Moffat said about there being a general lack of understanding out there of autism and its complexities.
11:00
I apologise to the witnesses for my temporary absence from the room. We have visitors from Malawi, and I was briefly doing something with my Malawian colleagues.
I will raise two issues. The first relates to recommendations 17, 19 and 20. Recommendation 19 talks about the development of a SIGN guideline and guidance. Do we have that now?
None of us works in that area. Sorry.
So, we do not know whether there is a SIGN guideline.
There is a SIGN guideline, which has been in existence—
The SIGN guideline is for children. I think that it was felt that this is not the right time to move forward on the one for adults—although I might have got that completely wrong.
So, that is work in progress. Where are we with the development of training materials, which is mentioned in recommendations 17 and 20?
My next question will be about the prison service. Unless we have a system that identifies individuals as they go in and tries to prevent them returning later or picks them up even earlier in the justice system, we will have real problems. Quite a lot of my caseload relates to individuals who have fallen foul of the justice system, and there is a basic lack of understanding among police officers, prosecutorial staff and the courts about what autism is and the consequences of someone having autism, particularly if they are at the Asperger’s end of the syndrome. What are we doing in that area? Can you give us some information on that?
I have been working with the Epilepsy Society along with an ex-MSP, Gordon Jackson. We have done a lot of work on epilepsy to get people in both the prosecutorial and defence lawyer systems to understand better what can sometimes be the consequences of post-ictal states in epilepsy. Getting people to understand those is making a big difference in that area, and I would like to know what is happening in the field of autism. As Alan Somerville said, it is very expensive to get somebody inappropriately into prison and, once they are inside the system, they rotate around inside it.
The very limited correspondence that I have had with prison psychologists and psychiatrists suggests that they regard the individuals as prisoners first and people second. There is little real attempt to generate what I believe is called a prosthetic environment in which to reform them or offer them a different way.
I do not want to stereotype, but there are certain aspects of a number of people with autism that predispose them to getting into trouble. Those include a willingness to comply with suggestions from people who do not have their best interests at heart; a lack of social understanding of the context in which they are being asked to do something; and a tendency to overreact when they become upset in certain circumstances. Those are stereotypes. I do not want to imply that all high-functioning people are like that, but a significant number are.
A scenario that has often been put to me is that a policeman comes up to a person with autism and says, “What are you doing, son?” and the person replies, “I’m leaning on this lamp post.” It is natural for someone with autism to speak literally about what they are doing, but it is a good recipe for getting a cuff round the ear and being chucked in the back of the van. Certain aspects of people’s autism can lead to their getting into difficulty.
As I said, all three of our organisations have worked with police forces to generate materials such as an autism alert card to say, “I have an autism spectrum disorder. I may not respond to your questions in the way that you expect” and so on.
A lot of training is also going on. I will give Glasgow a good plug. Strathclyde Police, in conjunction with Glasgow City Council, has produced an excellent video showing how people can react in certain circumstances such as in a library or looking in the window of someone who happened to have a bird in the window. That video is a powerful tool and I learned a lot from it. That sort of thing should be shown around. Nevertheless—I sound like a broken record—we always need to do a lot more.
I spoke to a lot of senior police officers at a conference at Tulliallan. Young officers often find themselves in potentially violent and dangerous situations. Do we really expect them to be psychiatrists as well in thinking about the individual? It is difficult.
My opposite number in Autism West Midlands has a project involving custody sergeants, which looks very good. Custody is the point at which a reasonably senior officer is sitting there, looking at these people and thinking, “Wait a minute—there’s something different here.” The intervention at that point, through the understanding of someone who is well trained and aware, makes a big difference. However, it is early days.
Like employment, criminal justice appears to be a significant gap in the strategy. The strategy needs to be re-thought, with a focus on that area.
Over the past few years, our voluntary organisations have worked very hard in providing training for police officers and liaising with police forces throughout the country to produce the alert cards that Alan Somerville mentioned as well as training DVDs. We very much hope that, when the unified force is established, we will be able to roll that sort of thing out across the country in one fell swoop. We are trying to promote the idea that probationers coming through Tulliallan should receive some form of autism awareness training. The National Autistic Society Scotland has also done some work with the procurators fiscal in the Glasgow area and in Dumfries and Galloway. We are small organisations and there is a limit to what we can do, but we have been active in those fields.
One of the things that concerns me is the scepticism about the number of people with autism—possibly undiagnosed—who populate our prisons. There have been only a handful of studies and the results have been all over the place. One study says that there are practically no people with autism in prisons while another says that the proportion is twice as high as in the general population. That is only 2 per cent, but it is still twice the number that we would expect. I cite the fairly robust but informal study that was done by a health professional in NHS Greater Glasgow and Clyde on the population of Barlinnie prison, both in the main prison and in the high-dependency unit. She interviewed prisoners using a diagnostic tool and sought to conclude whether the person would get a diagnosis in the outside world if they sought one. She found that 7 per cent of the population of the main prison and 14 per cent of the population of the high-dependency unit would have received a diagnosis. The drawback is that it was an informal study.
There is no consensus on the true story concerning prisons, but anecdotally and intuitively we would expect a considerable number of people with autism—a much higher proportion than in the general population—to be trapped in prison. What do we do about that? There needs to be a focus on it in the strategy. Like employment, it is an area that we need to revisit and think about again. It is a highly complex problem, as you said, but we should get it back in the strategy and focus our attention on it.
It would be good to hear more about that work with West Midlands custody sergeants and to get further comments on the work that is being done with prosecutors. Work also needs to be done with defence lawyers because, if they understand the problem, they will not get their clients to plead guilty automatically. There is a lot that we could do there.
We are into our last five minutes. Bob Doris has some final questions.
I will try to be brief, as I know that time is pressing.
I was going to ask how many people in the prison population are living with autism. From what has been said, I suppose that the answer is that we do not know, because the studies are all fairly small scale and piecemeal. The information is not all anecdotal, but it is leading towards the anecdotal. For me, an interesting issue is how we systematically assess the needs of people in prison, irrespective of whether they have autism, so that we can support them on exit. That issue goes wider than an autism strategy, but the answer that has been given is helpful.
Dr Moffat said that 85 per cent of people with autism are unemployed. Given that the modelling work predicts that 45,000 adults in Scotland are anticipated to have autism but only 2,000 are diagnosed as such, are we saying that 85 per cent of the 2,000 are unemployed? Is that where the 85 per cent figure comes from?
The 85 per cent figure comes from a campaign and research report that we produced a couple of years ago, for which we gathered data through a variety of sources. I would have to hold up my hands and say that the figure is not an absolutely concrete and definitive statistic, but that is the stat that came back from the thousands of people to whom we spoke.
My reason for asking is that, because we know who those 2,000 diagnosed adults are and we have captured that information, I suspect that the 85 per cent figure may be based on that 2,000 cohort. However, it is predicted that another 38,000 people out there may have a milder form of autism. I accept that the condition needs to be diagnosed before we can capture the numbers, but I would treat that 85 per cent figure with some caution, although I have no doubt that the total will be high, irrespective of what the actual figure is.
It is definitely not 85 per cent of the 40,000.
Yes, that is worth bearing in mind.
As the clock is ticking, I will move on to employment. What incentives are there for employers to take on people with a variety of barriers to employment, such as autism? How might public sector procurement—perhaps we can put just some of this on the record, even if we do not have time to go into details—be used to provide added value by ensuring, for example, that the skill sets of people with additional barriers to employment are part of the workforce that wins the contract?
The Scottish Government takes on 25,000 apprentices each year. As convener of the cross-party group on racial equality in Scotland, I know that when we asked how many of those apprentices are from non-white-European backgrounds, we found out that there were not very many, so the Scottish Government now has a drive on to ensure that the numbers are more representative. I also want to ask, as the convener has just suggested to me, whether the Department for Work and Pensions provides any support for such matters.
I apologise that we have only two minutes left, but it would be useful to get on the record some details about incentives for employers, the use of public procurement and apprenticeships and what support is provided by the DWP. Even if we can just get some of the issues on the record, we can return to the matter at a later date.
I will try to rattle through that. In my opinion, we need to set the bar high. If 25,000 apprenticeships are up for grabs, 250 of those should be given to young people with autism—pure and simple.
I think that national Government, local government and health boards should take a lead on the issue by using positive discrimination or at least showing a willingness to recognise that, as I said earlier, people with autism can often make the ideal employees. They could show some leadership on actively employing people with autism.
As regards the DWP, we believe that the current initiatives and programmes that are overseen by the DWP are failing people with autism. They are not fit for purpose in supporting people with autism effectively into the workforce.
That was a whistle-stop summary, but I am sure that we will return to the issue.
We are now in the last seconds of the meeting. I found that a very interesting session, so my thanks go to Mark McDonald for suggesting it as part of our work programme. The issue fits in with lots of bits and pieces of other work that the committee is doing.
I express the committee’s appreciation for your attendance and for the evidence that you have provided this morning. If you have any other comments about employability strategies, please let us know for completeness. Thank you very much for your attendance this morning.
Meeting closed at 11:15.