An interview with Ilona Roth: Getting to grips with the Autism Spectrum in the 21st Century

Ilona Roth is the author of The Autism Spectrum in the 21st Century: Exploring Psychology, Biology and Practice published by Jessica Kingsley Publishers. She is senior lecturer in Psychology in the Department of Life Sciences at The Open University, UK.

How did you first develop an interest in autism spectrum conditions?

While an undergraduate studying Psychology and Philosophy at Oxford University years ago, I had a vacation job in a psychiatric unit for children in Newcastle, my home town. The unit was run by the child psychiatrist Issy Kolvin, who had carried out pioneering research on autism, highlighting its links to epilepsy, among other things. There were several children with autism in his clinic, and I vividly recall the experience, which will be familiar to many who have encountered autism, of a small boy with no language, who would take my hand and use it to get whatever he wanted- a toy, a drink or the opening of a door. The fascination and compassion that I experienced in the company of these children stayed with me, and I must have started to read about autism, though I don’t remember exactly what I read! When I graduated from Oxford, I was offered a place to work as research assistant with Beate Hermelin and Neil O’Connor, who had conducted some of the first research on perceptual and cognitive impairments in autism. But instead I took up a D.Phil. place at Oxford. I sometimes wonder how my career path would have differed if I had opted for the post with Hermelin and O’Connor. As it was, I completed a dissertation on visual selective attention in ‘neurotypical individuals’ (a term that was not around at the time!). Yet the interest in autism stayed with me.

As an academic psychologist at the Open University, I have often turned to autism as a case study which highlights some of the most interesting and fundamental questions one can ask about child development. I came to know Simon Baron-Cohen in the early 1990s when I invited him to appear in a BBC film I was making about autism. We filmed much of the material at the Sybil Elgar School, including a ‘reprise’ of the famous Sally-Anne False belief task.

These days I am lucky enough to make autism the main focus of both my teaching and research work. In Autumn 2009 I and my colleagues launched a new online Open University course on the autism spectrum. A virtual course like this is readily accessible to people who are unable to attend conventional university, and our students include many parents of children on the autism spectrum, as well as individuals on the spectrum themselves. I am deeply moved by some of the experiences recounted within our forum discussions, and I believe that we are learning almost as much from our students as they do from us.

What are the key developments in the diagnosis of autism spectrum conditions in the last century do you think?

I would prefer to make that ‘in the last 70 years’ since autism was not really recognized before Kanner described it in 1943. Once Kanner had identified autism as a syndrome, diagnosis provided a measure of recognition and help for some of those children who would otherwise have been diagnosed as psychotic (for instance), and quite possibly consigned to mental hospitals. However views on the essential diagnostic features of autism continued to vary widely, and it was only in 1980 that formal diagnostic criteria for autism first appeared in the Diagnostic and Statistical Manual of Mental Disorders. While DSM and its European counterpart ICD (the International Classification of Diseases) are by no means infallible or immutable, having a set of diagnostic criteria that were widely known and accepted was a big step forward, promoting more reliable diagnosis, wider understanding of autism, and scope to estimate how many people it affects. A further important development came in 1994, when the fourth edition of DSM differentiated several ‘sub-types’ of autism, including Asperger syndrome. This formalized an insight, already apparent to most people working in the field, that autism is a spectrum, varying in its expression and severity between individuals, not a single syndrome, as Kanner had first thought. Alongside the evolution of the diagnostic criteria, there have been great steps forward in how they are implemented in practice, through increasingly sophisticated assessment tools, used by researchers and clinicians in evaluating individual cases.

The next big step- and a controversial one at that- is the prospect that separate diagnostic sub-types, including Asperger syndrome, may be omitted from the forthcoming edition of DSM, and replaced by a single diagnosis of ‘autism spectrum disorder’, the variation between individuals being captured by a symptom severity scale. There are some sharply contrasting views about the wisdom of this change, which I wrote about in the last JKP newsletter.

Throughout all these stages of development, diagnosis of autism has depended on careful description and evaluation of its psychological characteristics – how people think and behave. With growing knowledge about the genetics and neurobiology of autism, biological markers may be identified one day, which will enhance the reliability of diagnosis. Many will view this as a great advance, but like everything else in this complex field, there are different shades of opinion about the benefits.

What do you feel are the main challenges facing individuals on the spectrum in today’s society?

Autism is much more widely known these days, especially in relatively developed countries. In the UK, for instance, there is more public understanding of autism than, say, twenty years ago, and much more affirmative action by, and on behalf of people on the autism spectrum. The passage of the Autism Bill 2009 into English law, and similar developments such as the Autism Strategy Bill in Scotland, should take these positive developments a stage further. But there is still much misunderstanding. In fact there seem to be two contrasting stereotypes about people with autism – either they are thought to be all severely disabled or all eccentric geniuses. While autism can reflect each of these extremes (or both together) it can also be many things in between. One challenge, therefore, is to ensure that the full spectrum of variation is understood. This is essential if people on the autism spectrum are to be seen as individuals with different needs. For some the main need is for more specialized services and support for themselves and their families. For others it is more scope for agency and autonomy, and the recognition that people with traits such as attention to detail, persistence, candour and honesty have much to contribute in the workplace: they need and deserve employment.

In a more global context, the problems faced by people with autism are often massive. In some countries, individuals experience great suffering and discrimination on account of the misunderstanding and fear evoked by their symptoms, and the lack of services and support. Addressing these difficulties is a pressing challenge for society as a whole.

You have a particular interest in the poetry written by people on the autistic spectrum, why is this?

Autism presents many paradoxes. It is often said that people on the autism spectrum lack imagination and the capacity to reflect on self and others. Both these claims have some truth. Yet some people on the autism spectrum enjoy writing poetry, which would seem to involve both imagination and expressing ideas about the human condition. Several books of poetry by people on the spectrum have been published, and I wanted to know what it was like.

In a study I conducted a while ago, I analysed poetry by several different writers on the spectrum, looking at the themes they explored, imaginative use of language, and references to thoughts and feelings. Some had tremendous flair for metaphor; most spoke movingly about their own feelings, their experiences of disability, and their need to relate to other people. Such writings enable people on the spectrum to tell others what it is like to have autism. This first-hand information helps to build a more complete picture of the ‘mental world’ of people on the spectrum, but also highlights that people on the spectrum share many of the same aspirations and needs as everyone else.

Now that our new course is launched and the new book is published, I am looking forward to doing more work on the fields in which people with autism have special interests and skills. It is tremendously important to understand these activities, and to celebrate them. It also seems quite possible that when people on the spectrum draw, write, or express themselves in other ways, this has therapeutic potential which should be explored further.

What are you currently reading in your spare time?

When I am reading a really good book, I become deeply immersed in it, and then feel rather lost when it is finished. This was my experience of The Kite Runner by Khaled Hosseini. It is a remarkable and moving story, partly autobiographical, and I gained a much greater understanding of Afghanistan through it, though some consider Hosseini’s account controversial. I am half way through Amos Oz’s autobiographical book A Tale of Love and Darkness. He is a good story-teller- especially the episodes about his Eastern European forebears- but it is in some ways a sprawling book, which needed more editing.

Writers of detective thrillers often excel at evoking the character and atmosphere of a place. I love Michael Dibdin’s descriptions of Italy, and Ian Rankin’s of Edinburgh- my youngest son is a musician and student there, and I like being able to picture him in his home environment. Currently I am reading Rankin’s latest work Doors Open.

I have just finished Catching Fire: how cooking made us human by the biological anthropologist Richard Wrangham, who is an old friend. In this book Richard sets out his fascinating thesis about the important role of the transition from eating raw food to a cooked diet in promoting the evolutionary development of humans.

I am starting Bill Bryson’s edited collection of essays Seeing Further: the Story of Science and the Royal Society, a celebration of this unique institution which, by the way, has hosted some good conferences on autism. My late father, Martin Roth, was one of the very few psychiatrists to have been made a fellow, in recognition of his contributions to medical science. I know he would have enjoyed this book.

Last but not least, I am reading, if you can call it that, French Grammar Drills by Eliane Kurbegov. We have a house in the mountains in France, and it is very important to me that when I talk with friends in our tiny village, my French is as accurate and fluent as possible. Having a husband who is an exceptional linguist keeps me on my toes!

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