Economy, Energy and Tourism Committee – Autism Debate

Ms Alexander: I refer to questions 18 and 20 in the questionnaire, on long-term health conditions. I welcome the fact that there are new questions on long-term health conditions and that there were consultation events on them in the summer. The issue is whether we can move from what is a good set of response categories to a better set of response categories, particularly with respect to the autistic spectrum. I do not know whether I speak for other members, but I think that we have probably had more individual representations on that matter than on any other in recent days. The registrar general will be familiar with the anxiety that exists.

In your report on testing responses, you say that you discovered that people with autism used five different categories in responding to the questions, which suggests that we do not have the best wording to identify the total numbers affected, or to optimise the value of the census as a planning tool. In 2001, the Public Health Institute of Scotland suggested that it is critical that we collate the numbers of people who are affected and that this census might provide the opportunity to do. I will pause there and ask you to give us a sense of where we currently stand on that.

Jim Mather: We understand the wish to learn more about autism. The real reason behind questions on health conditions are to allow us to analyse links to other social and economic factors, rather than to get a definitive accurate count of the number of people with specific conditions. There is a concern that the categories already include—under paragraph 18(d)—”Learning difficulty or developmental disorder”. Those final two words were added at the suggestion of the National

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Autistic Society Scotland to identify people with autism.

The concern is that the suggested move could confuse autistic people with regard to which box they should tick, which might cause us difficulties. The write-in box gives us the scope to capture that. We are utterly sensitive to people’s needs, situations and aspirations, and we are desperately concerned that we do not unintentionally create confusion and disenfranchise people, rather than achieve the objective that we all want to achieve.

Ms Alexander: If the registrar general does not wish to add to that, I have a few further questions. I will press some revisions to the order today; there are a number of options.

The issue of space on the census form has emerged, but that may be affected by subsequent decisions. The emerging view, given that we got five different responses from people on the autistic spectrum when they were asked to answer the question, is that that part of the census needs to be revisited. The incidence of the condition is not known, but its prevalence is higher than that of many of the other conditions that we are trying to specify in the census. We believe that it affects one in 100 people, although as I have said, we do not yet have all the evidence on that.

As the minister has indicated, the nature of the condition is that people look for literal specificity, which may lead us towards specifying the disorder on the form. The professionals are increasingly seeking a discrete classification—I will not go into detail on that, but it would be valuable for us to be ahead of the game, or at least running parallel, in the census.

I will make a suggestion that reflects the revisions that we will consider later, which I am happy for the Government to fine tune at a later stage. Autism Rights and The National Autistic Society Scotland are moving towards the position that it is incredibly difficult to distinguish between a learning disability and a learning difficulty. Given that a person might suffer from dyslexia or dyspraxia, it might be wiser to bring together the “Learning disability” or “Learning difficulty” categories in order to allow the “developmental disorder” category to stand and to have—if there is space—a specific category for autism spectrum disorder or Asperger’s syndrome. However, if you find that you are incredibly pressed for space, it might be possible to combine that condition with the “developmental disorder” category. An examination of the evidence from testing people’s responses produced the view that the “No condition” category is perhaps not entirely relevant or appropriate, so the removal of that category might free up space to tease out some of the information that we seek.

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Committee members have submitted several revisions to the order, and I will press a set of revisions today. We will perhaps not end up with the precise formulation that the revisions set out, but there is an overwhelming sense that we should not miss the opportunity to try to get some precision in relation to the 50,000 individuals whom we believe are affected. I think that there is widespread recognition that, vis-à-vis other disabilities, service provision for such individuals has been poor. It is critical, particularly in the adult category, that we get some specificity around numbers. That would be helpful. I will press my revisions so that the Government has the opportunity to reflect on the issues and engage in further dialogue with the two organisations that are involved in advance of final parliamentary consideration.

Jim Mather: It is useful that Ms Alexander has put the matter on the record in such a nuanced way. It would be sensible for me to bring in Duncan Macniven and Rob Wishart to talk about the flow of data, with regard to the way in which the question is framed and the data are used.

Duncan Macniven: It is a difficult question to phrase. It is a new issue, and there is much demand from the health service for such a question. However, as the minister said, the census is not designed for that, and the questionnaire could not, because of space considerations, possibly be used to identify every health condition. For example, we have drawn a lot of conditions together under “Physical disability” and—as you can imagine—even in the deaf community, there is a demand for more categories under “Deafness or partial hearing loss” to reflect the spectrum. It is difficult to break things down below the kind of general categories at which we have arrived and I would not claim that those general categories are absolutely perfect. We have fine tuned them and fine tuned them again, most recently in response to a useful consultation event last summer, but as Ms Alexander hinted, professional opinion in the field is moving on and has not come to a specific view. The opinions that we are picking up would be hostile to the union of “Learning disability” and “Learning difficulty” that her amendment suggests.

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The reason why we have put in the “No condition” box at the foot of the question is that our policy throughout the census questionnaire is based on the good survey design principle that everybody has an answer to give to every question except the ones that they have been told to skip, so that a respondent does not find that none of the tick boxes applies to them. That is an important point that we are anxious to keep, but

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there is scope for flexibility in the number of lines in the question. It is not full, although it could not incorporate many more examples, and I would seek a general terminology rather than a specific one. We may be able to come to some better form of question, although it would need to be done very rapidly indeed to avoid us missing the March 2011 boat, because we need a firm questionnaire approved by Parliament by the middle of May and, granted the time that orders have to spend in Parliament, we have only a few days to get that right.

Ms Alexander: I am aware of how pressing the time constraints are, but this has been a helpful exchange. We would press the matter in the Parliament ultimately, but it would be preferable for the Government to reach its own view. There are two principal organisations. The registrar general is right that there is the option of two formulations, but even minor changes could move us enormously further forward, given the difficulties of the current formulation in the testing of responses, in which autism was classified in five different ways. I will press the amendments today. It would be helpful if the clerks were able to share immediately with the Government all the representations that we have had. I hope that we can find a successful way forward by the time the order comes back to the full Parliament.

Jim Mather: We welcome that material being provided by the clerk to the committee. I bring in Rob Wishart to talk about the data usage.

Rob Wishart: I am afraid that I do not have a solution to offer. I reiterate Duncan Macniven’s comment that joining together the headings “Learning disability” and “Learning difficulty” would present many difficulties for lots of other groups. We have had many representations on that front. I cannot say what the solution is. We have particular concerns about that element of it.

Ms Alexander: Could you combine “developmental disorder” with autism and Asperger’s syndrome? One of the two professional bodies has suggested that.

Duncan Macniven: There might be a solution somewhere in that area.

Jim Mather: We will certainly explore that. It has been a good exchange, which we will look to lift off the Official Report.

The Convener: The various representations that the committee has received, as opposed to those that were made to individual members, were circulated in today’s papers and are therefore available. We will ensure that the Government is given a copy of the papers.

Christopher Harvie: My question is on the incidence of Asperger’s syndrome—the disease of

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the Ys, as it is known in some countries. In Scottish historical terms, people such as Adam Smith and Lord Monboddo almost certainly had Asperger’s. It is probable that Hugh Miller and Charles Rennie Mackintosh were affected, too. Such people have tremendous cognitive facilities on the one hand and great social awkwardness on the other. Asperger’s is not a disability; it is something quite different. It is a cognitive gift—

Jim Mather: A cognitive capability.

Christopher Harvie: Yes. From the standpoint of any nation that is concerned with invention and innovation, the ability of such people to draw quite incredible and rapid inferences within their specialism is something that we overlook at our peril. We should not overlook the way in which such people should be specially nurtured. The French sociologist Emmanuel Todd made an interesting interpretation of Scottish and Irish history. He says that family structures in Scotland and Ireland were such that they encouraged this type of what can be called characterative development. We know that, in the 18th century, a traveller to Edinburgh was said to have remarked that he could, close to the Edinburgh Tolbooth,

“in a few minutes, take 50 men of genius and learning by the hand”.

How many of them were suffering from Asperger’s syndrome?

Jim Mather: That is a fascinating proposition. I understand that a Danish company specialises in recruiting such people for their brilliance and capability in handling complex situations.

Christopher Harvie: Would it be possible for people to tick that box? Doing so would give our scientific community a notion of how to detect gifted people and how then to direct them.

Jim Mather: I invite Professor Harvie and Ms Alexander to convene with me and the registrar general after the session. We could continue the discussion and perhaps reach an accord.

Ms Alexander: I would like to put on the record an issue that is very much in that vein. The revision that I am pressing today would, for the reasons that Christopher Harvie pointed out, have a separate subsection marked “autism spectrum disorder” or “Asperger’s syndrome” as distinct from “developmental disability”. I think that there is a desire to keep separate the two, if that can be accommodated. I hope that the minister will reflect on that prior to our final consideration of the matter.