Photo: Martin Knapp with Dr Elizabeth Vallance
Dr Elizabeth Vallance
I am very proud of our report The Autism Dividend: Reaping the Rewards of Better Investment, not only because it is probably the most comprehensive and evidence-based piece of work ever carried out in the field of autism research but also because of the attitudes and values it uncovers and the deep social and cultural issues it exposes in our thinking about autism and autistic people.
The sound empirical work undertaken by the LSE team under Martin Knapp is important, not least in showing the shocking lack of robust evidence for either effectiveness or cost-effectiveness of most of the interventions it looked at. This is all the more worrying when we put it in the context of the limited resources available for such support for autistic people; it is a scandal if any of these are applied in ways which are not of proven value. This is Steve Shirley’s point when she says, in her piece here, that we need to understand which autism interventions are effective and the quality of the evidence in each case. One aspect of the world I would like to see then, would be a commitment to research being routinely undertaken to underpin interventions so that only those of proven efficacy would be pursued. This would require that many more sources of research funding became available and that our current puny £4m a year increased by orders of magnitude. Such an increase should not be impossible when we compare this tiny research spend (a mere £6 a year for each autistic person in the UK) to that of other countries and this is why we held our Funders’ Forum in October, to encourage much greater investment here. We are not just sitting back waiting for the world we would like to see to appear. We are actively encouraging it to do so!
But for me, important as the extension of the research base is here, it is the social and cultural concerns, which have come up again and again in our discussions and in our report, which are ultimately the most significant. These are the existential issues which affect autistic people’s everyday lives and make them either possible or intolerable. And it is these above all which inform my vision of the world I want to see. I started on this project with a rather narrow and limited idea of autism and what I thought of as the autistic perception of the world. My experience was in mental health rather than autism per se and I tended to assimilate one to the other, which can lead to an unfortunate blurring of the idea of a separate autism identity which I talk about later. I was, of course, aware of the dangers of the “medical model” which sought to “cure” and talked of autism as a “condition” which, it suggested, nobody could possibly welcome or choose to accept. If there was a pill you could take to reverse it, rather like taking an aspirin for a headache, you would obviously do so. I appreciated that this model was too crude and lacking in nuance but I was still sceptical about the suggestion that for many autistic people their autism was part of their essence. It was as much a component of their being and their sense of self as their blue eyes or brown hair, their musical talent or tennis-playing skill. I have come to believe otherwise. This is not to be unrealistically optimistic about the very different perceptions of people on what is a wide experiential spectrum. As Ian Ragan points out “there are those whose autism brings them no discernible pleasure and whose lives are bound by anxiety and lack of understanding of the world around them”.
Yet, the notion that autism can be just “another way of being”, for at least some autistic people, is one that has become very compelling to me. Indeed the alternative, that there is only one “way of being” and it is the neurotypical one, seems to me to be arrogantly misled. Not only is it disrespectful of some people’s identity and autonomy and dismissive of their perceptions and experience but, crucially, it can lead us into dead ends in terms of the interventions we make in the lives of autistic people who often, as Jude Ragan reminds us in the educational context, do not need or want to be made more like the rest of us but simply to be given the support to survive, and indeed thrive, in a neurotypical world. This, if we listened to autistic people more, would allow us to put scarce resources into interventions which helped them live their lives fully, as Dinah Murray calls it “liberating potential…..rather than pathologising us as problem people”.
I was made very aware of the fact that we tend to think of autism as a problem which has to be overcome by giving autistic people aids to become more like the non-autistic, when I read a newspaper article recently lauding the invention of “smart specs” the lenses of which apparently cued autistic people to give “normal” responses in conversations with the neurotypical. A year or two ago I would probably have thought this might be a good idea and possibly rather helpful. But helpful to whom? Now I find it quite insulting and distasteful. It suggests that rather than accepting that there are other ways of being and accommodating these even in minor ways (less bright lights, rather quieter music or accepting that not every conversation needs eye contact) we try to force everyone into the same Procrustean bed, however uncomfortable it may be for them. As Wenn Lawson puts it, “Inclusion isn’t about including us all equally, it’s about including us all differently”. Catriona Stewart underlines this point in her piece discussing the amplification of society’s often discriminatory treatment of all women where “autistic females are a marginalised group within a marginalised population”. As she concludes: “One size cannot possibly fit all”.
This is also why co-production has been such an important element of our report which is not the result of a collection of non-autistic experts pontificating about what autistic people “need”, but of working together, taking account of the lived experience of our autistic colleagues. This is not only ethical but practical and the future I would like to see would be one in which any research and the practice which it informs in the area would be a co-production, as Damian Milton says, “fully involving autistic people in its design and delivery”.
Finally, in the future I’d like to see, there would be a recognition and appreciation of a unique “autism identity”. Autism would not be slotted in, as it so frequently is now, under “mental health” or “learning disabilities”. Some autistic people do indeed have learning disabilities and many have mental health problems (particularly extreme anxiety, which is often the result of trying to make their way in a world which takes little or no account of their perceptions and understanding). But the incidence of these other conditions, when they occur, is separate from their autism – the situation is more like a Venn diagram than a series of concentric circles.
Separating autism out from the mental health and learning disability categories is not only important existentially for autistic people, in that it recognises the authenticity of their particular experience, but practically, in encouraging the diagnosis of autism itself so that appropriate support can be given. Larry Arnold would like to see diagnosis taken out of the hands of clinicians and given to educational psychologists whom, he argues, are better qualified in this context. But, regardless of who does it, at the moment diagnosis and data gathering are patchy (to the extent that there are some parts of the country where there appear to be no autistic people –presumably because none have been identified and diagnosed there). The recent NICE guidance to GPs on identifying and collecting data here could be an important start in the establishment of this separate autism identity and Michael Fitzpatrick, himself a GP, indicates the vital importance of informed clinical/ practitioner interventions. But this is just a start and, as Hilary Gilfoy rightly points out, we do not have – but need – information which is “consistent, based on agreed definitions and shared across services and sectors.” Only thus will we acquire databases which allow good practice to be universally implemented.
The Autism Dividend must not become simply another report which highlights all the things we have failed to do in the past, while the lives of autistic people remain much more difficult, frustrating and painful than they need be. Our report’s recommendations must become the future we all want to see. Let’s make sure that it happens.
Dr Elizabeth Vallance
Chair of National Autism Project Strategy Board. Read more about Dr Vallance here.
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