Conducted by David Celiberti, ASAT Executive Director
I recently had the wonderful opportunity to interview Jane Asher. Aside from her busy life as an actress and author, Jane Asher is a successful businesswoman and entrepreneur. She has been working professionally in film, theatre and radio since she was 5 years old. She has run her own business, Jane Asher Cakes, based in Chelsea, London, since 1990, selling bespoke celebration cakes and a wide range of home baking equipment.
She has also written more than a dozen books, including three best-selling novels. Jane’s work in the charity sector is well respected. She is President of Parkinson’s UK, President of the National Autistic Society, President of Arthritis Care, Vice President of Autistica, and Ambassador for the Prince’s Trust, Friend for Life, Terrence Higgins Trust. She is a Patron of many other voluntary organizations.
Q: Can you share with our readers how you were first introduced to autism?
A: I first became involved with autism when I went to a children’s tea party in 1985. Children representing various charities had been invited, and I remember the room being full of the noise and excited laughter that one would expect. One table, though, was oddly different. At first I couldn’t think quite why it stood out from the other three – the children had no obvious disability and looked quite ‘normal’ – but after a few seconds of watching I could clearly see that not only were the children unusually quiet, but that there was no interaction between them: no shouting or joking – no squabbling or arguing. They didn’t even look at each other – indeed they seemed completely unaware of each others’ presence. The difference from the behaviour of the other children was so marked that I asked one of their helpers where they were from. (This ‘carer’ was Lorna Wing, whom, as I’m sure you know, was one of the great pioneers in the autism world and first described the ‘triad of impairments’. So I had my first lesson from the top!). The children were, of course, autistic, and that was when my association – and, in some ways, fascination – with autism began.
Q: Your work within the autism community has grown substantially since that initial encounter. What has led up to your heightened level of involvement?
A: Soon after that day, I was asked by the National Autistic Society (NAS) to open a new playgroup they were going to run in a room at their head office for some local children with autism, and I was only too happy to do so. While I was there I learned even more about the condition, and spent quite some time with the children.
Clearly, although autism can be extremely distressing, even devastating, for those affected and their families, it also entails a way of seeing and interacting with the world that is extremely interesting and makes one consider just what we neurotypicals take for granted and consider “normal.” I have huge sympathy with the view of much of the Asperger community that the autistic way of looking at things is just as, or in some ways more than, valid as that of the rest of us. The way neurotypicals talk nonsense in ‘social communication’ for instance (whether it’s talking about the weather or casually lying without thinking twice). I found myself becoming more and more intrigued and interested – and, gradually, more knowledgeable and engaged.
Eventually I found I could be useful to the NAS by not only visiting schools and residential units and hopefully gaining a little publicity and spreading awareness, but also by speaking about autism to people who might know nothing about it or who could provide us with valuable funding. Once drawn into the world of autism, few of us ever leave it!
Q: You are very knowledgeable about the fact that there are so many unsubstantiated treatments for autism, many of which are dangerous. Most lay people have no idea that this is a huge challenge for the autism community as a whole, particularly for parents of newly-diagnosed children who are looking for clear answers and expert guidance. What is the experience like for parents of newly-diagnosed children in the UK?
A: You are so right about the many unsubstantiated ‘treatments’ – even ‘cures’ – that are suggested for autism (as, indeed, they are for so many other conditions). It’s so hard for any parent or caregiver to have their child diagnosed with an incurable condition that it’s unsurprising that many turn to alternative or complementary therapies. There are large numbers of these therapies which can be divided into several rough categories; from manipulation of various parts of the body to the channeling of ‘energy fields,’ from the removal of mercury from the body to changes in diet. Few of these therapies are supported by any clinical research, but you can easily see how a desperate parent might leap at the idea of some ‘miracle cure’ highlighted in one of the tabloids – something that sadly happens only too often. Some of these interventions are positively harmful; but with autism being such an individual and variable condition it can be very difficult to construct standardised, double-blind clinical trials.
In the UK, particularly in the current economic climate, it can be hard enough – still – to access a diagnosis of autism, and even harder to access the correct educational and social support that is the statutory right of every child with a disability. You can well understand why people turn to unconventional theories and implausible interventions. As a doctor’s daughter, naturally I fear for those who make such uninformed choices and only wish that everyone had access to someone with genuine understanding and knowledge of this condition and its possible interventions. It’s vital that a fully informed choice is made. Parents and medical practitioners should be aware of the extent to which a particular intervention has been shown to be safe and effective in peer-reviewed scientific studies. So much is anecdotal (even the very popular gluten-free diet has not yet been shown to be effective in scientific studies, and it may even be that such restricted diets are potentially harmful).
At the NAS we work very hard in lobbying government and local authorities to do more for those with autism (the Autism Act was a recent triumph in at least putting the case for adults with autism clearly on the agenda), but there is a long way to go. Not enough doctors, psychologists, nurses or educationalists understand the complexities surrounding autism, let alone know just what it may take to offer the best possible hope of an improvement in symptoms and a maximisation of the potential of the individual. Every person with autism will show the effects of their condition differently and there will never be one solution that will work for all.
Q: Here in the United States, families are bombarded by information on the internet much of which is grossly inaccurate. Where can UK families turn for accurate information?
A: In the UK there is excellent information available nowadays, firstly via the National Autistic Society (particularly on our website, www.autism.org.uk), which is easily accessible and puts across a balanced view of just what the parents of newly-diagnosed children should be trying to access in order to help give their child the best possible outcome (also for newly diagnosed adults of course). There is also the other organisation that I support, Research Autism, www.researchautism.net, that specifically researches interventions in autism and gives balanced and scientifically-based information on just what appears to help, and – maybe more importantly – what has no basis for claiming to do so. So the information is there, but naturally again, as with cancers, degenerative diseases and other serious conditions, you will never stop people from searching for an answer; especially for that elusive ‘cure’; and we can all become irrational when confronted with something so potentially devastating and for which there is no easy or obvious way forward.
Q: As an actress, there must be so many different organizations lining up to ask for your help. We are so grateful that you have chosen to use your celebrity status to support the development and testing of science-based treatments. The concept that science is crucial in terms of treatment for people with autism is much more complex than simply supporting any organization that helps children with autism swim with dolphins or access some other specific treatment. Do you have a background in science? How did you become so involved in this particular issue (advocating for science-based treatment)?
A: That’s an interesting question! I suspect it is largely due to the influence of my father, Dr. Richard Asher, a consultant endocrinologist who was renowned for his rational and well-informed approach to the complex field of medicine (and for his witty and inspirational lecturing and writing: his ex-students include Oliver Sacks and the British doctor/theatre director Jonathan Miller). I’ve grown up fascinated and enthralled by science, and get very depressed when its wonders are ignored and pushed aside by pseudo-science or fantasy. For many years I was a patron of another organisation of which I was very proud – Seriously Ill for Medical Research (SIMR), which campaigned for public understanding of the need for animal research. This organization was started by a young man with Friedrich’s Ataxia, who was deeply frustrated by the actions of the anti-vivisectionists. He sadly died a few years ago after many years of excruciating pain and other problems. So I guess the subject of promoting the understanding of science is a subject generally very close to my heart.
Q: Due to your knowledge in this area, do you have a vision about how we need to go about educating professionals, paraprofessionals and laypersons about the importance of following the science before subjecting a person with autism to a treatment?
A: No specific vision I fear… it’s all part of the major problem that I’ve touched on in the previous paragraph. How do we combat the rather fascinating, but ultimately extremely damaging, instinct and tendency of the human species to believe in things for which there is absolutely no evidence– whether it be the supernatural, rituals, luck, magic or other paranormal areas, or ‘miracle cures’ and their like – rather than trusting science and modern medicine? And, as I mentioned before, it’s particularly difficult to target the strong instinct of a parent to try almost anything, no matter how expensive and/or unproven, in the desperate search for something to help their child. We all know how easy it is to make completely erroneous deductions from what appears to be clear evidence, and I’m sure if I had had a child with autism who had been speaking and behaving in a neurotypical way up to the time of an MMR jab and who had soon thereafter developed autism, it would have been only too easy to have come to a totally misguided conclusion. We just need more people spreading the word about the only approaches to autism that appear to make a difference, and even that is not really researched enough to give unequivocal results. As with so many important causes, money comes into this, and also the teaching of science in schools, which has not been as good as it should be in the UK for some years. For anyone keen to learn more, I highly recommend an Open University course that I took a couple of years ago – ‘Autism in the 21st Century’ – which is a beautifully constructed, scientifically-based module that really brought my information up to date.
Q: Finally, do you have any advice for parents of newly-diagnosed children?
A: Naturally it can be very distressing for any parents to have their child diagnosed with autism, but I think it’s really important to see that as the first achievement in making the best possible life for him or her. Without a diagnosis it’s impossible to access whatever support and education may be the best way forward. It’s important, too, to understand exactly what the diagnosis means – the word autism now covers such a very broad spectrum of conditions. It’s vital to know exactly which one the child has and whereabouts on the range of ability the condition falls. Early intervention can make a real difference and if parents are not automatically put in touch with them, then it’s a good first step to contact the local social and educational services – they’ll be the key contacts for providing what may be needed. But I’m not going to say it’s easy – even if the best possible school is found, for example, it can be a legal and emotional nightmare getting the funding put in place to access it. And this is why it can be so tempting to try an unsubstantiated intervention that may be easily available, but I’d definitely recommend that before trying anything, a call is made to the NAS helpline. They can put parents in touch with the right person to help them. There’s also a very helpful leaflet on the website ‘After Diagnosis’ to download. For sure I’d say don’t try anything that hasn’t been recommended by a medical professional before checking for certain that it will do no harm and that it won’t interfere with accessing something that can really make a difference. Above all, with the knowledge that we now possess, I think it’s worth saying that, although children with autism will grow up to be adults with autism, there is much to be done to ensure that they can live lives of dignity and fulfillment. Families in the UK can contact the National Autistic Society Helpline: 0808 800 4104 (Monday-Friday 10am – 4pm).
On behalf of the Association for Science in Autism Treatment, I want to thank you, Ms. Asher, for taking time from your very busy schedule to participate in this interview. The autism community in the UK is very fortunate to benefit from your time and talent, particularly given your strong adherence to the notion that science matters and that research should guide decision-making. We certainly hope our paths cross again!
Citation for this article:
Celiberti, D. (2013). An interview with Jane Asher, actress, advocate, and entrepreneur. Science in Autism Treatment, 10(3), 4-7.