AUT 2014 WOMEN AND AUTISM GOULD STEWARD PODCAST [Start of recorded material] Hello and welcome to Autism Matters the official podcast series for autism the International Journal of Research and Practice. I m your host Laura Crane and I m delighted to have two guests joining me for the podcast today. First we have Dr Judith Gould who is Director of the National Autistic Society s Lorna Wing Centre for Autism. And we also have Robyn Steward who is author of the Independent Women s Handbook to Super Safe Living on the Autistic Spectrum, an ambassador for the National Autistic Society and a woman with autism herself. Judith and Robyn are here today to discuss the important and under-researched topic of women on the autism spectrum. Judith, Robyn, thank you very much for joining me today. Now, to get us started I wonder if Judith you could tell us whether women with autism show the same symptoms and characteristics as men with the condition, or whether there are some important differences between men and women on the spectrum? Well, yes Laura they are very different. Women and girls are very good at masking their symptoms and appear more sociable than the men and boys. What they do in fact is they learn to act in social settings which then they come across as being more able and social and certainly don t fit into the diagnostic criteria, which I m sure we ll talk about later. So effectively they are generally more social, they are more socially inclined than boys. They often want friends and they even sometimes may have one special friend. But often this is on the periphery. And people aren t aware of the intensity sometimes of their desire to have friendships. And I think the other point is that girls tend to be less aggressive and they re often more shy and over-sensitive. And people just say, well, these are just female traits. And often, you know, people haven t had a diagnosis because they ve actually said, well, this is just what women are like. And in fact women on the spectrum is a very different thing. They really are trying very hard to learn the social skills which of course can be very exhausting and tiring and often eventually may lead to mental health issues. And given these important differences between men and women on the spectrum, how easy it is for women to get a diagnosis of autism? Are clinicians generally aware of how autism presents in women and girls on the spectrum? This is the major problem is that we still have a male stereotype of what autism is. And I guess although Rain Man really did change peoples attitudes in thinking about autism, so that was very positive in some - 1 -
ways. But there are still clinicians and professionals who have a very narrow view of what autism is, of the Rain Man type presentation. So having that sort of idea and then thinking, well, the girls we see don t fit into that at all. And one of the main differences in the presentation of the girls and the men is that the boys and men often have very traditional special interests and routines like transport, cars, collect information on technical things rather than more social things. Whereas the girls actually their special interest and routines are around more female orientated interests like animals, soap celebrities, fashion. And because people just assume, well, this is just a female thing they re not recognising that it s the intensity and the quality of those interests that separate those typically developing girls from girls on the spectrum. So at the moment the classification systems, the diagnostic systems, the examples of behaviours are still very male oriented. So an unenlightened diagnostician perceives someone who appears more able, who has reciprocal communication, who uses appropriate assets and gestures, the sorts of things I know that Robyn does, wouldn t meet the criteria. And, you know, you hear such horrendous stories of clinicians actually saying, well, this person makes eye contact and, you know, they re making approaches to meet there s no way they can have autism. And Robyn was this your experience? I wonder if you could tell us how easy you found it to get your diagnosis of autism? Well, I think the time at which I was diagnosed is quite significant here because I was diagnosed in 97, 98. So Asperger Syndrome had only been diagnosed since three or four years by the point I was diagnosed at. And so obviously peoples knowledge of what it means to have Asperger s was going to be quite limited because it was still quite new. Because the way that Asperger s came about was the paper that contained the information was written in German by Hans Asperger and had to be translated and then obviously that information had to be disseminated. So and it did take three years to get my diagnosis. I was referred when I was eight years old to CAMS. It took three years until I was 11 to get a diagnosis. And I should think that being female probably had something to do with it. But also that I have other co-recurring conditions and that may have also affected the clinicians who were assessing me, because they would have had to take into account how those co-recurring conditions affect my daily life. And I guess having autism plus having co-recurring conditions presents its own unique challenges. But I wonder if you could tell us what you think the main challenges of being a woman with autism are? - 2 -
Yeah, well going back to what Judith said about society s perception of what women and girls are like, I think that that s a really big issue for many women and girls. That, yes, society kind of thinks, oh, well, that s just how this person is bound to behave because they re female, you know, if they re a bit quiet or whatever. And obviously, I mean, everybody who is on the autistic spectrum is unique because they re heterogeneous population. You know, there are people who are on the spectrum who are extroverts, but I do think that society s view of women is quite a challenge. Also I think that women often find it hard to maybe conceptualise their agenda. Obviously, again it s not something that affects everybody, but I hear a lot of women who they might say they identify more with males than they do with other females. I don t know Judith if you ve come across that? Yes, Robyn, I agree with you. Yeah, I agree. And that has a really big impact on the individual s life and the way that they interact with people and the way that they think about themselves. And when you hear about self-advocates talk about autism, and I m definitely included in this one, but you ll hear people say that it s like your gender or your sexuality that is a key part of you and you need to know about it. And so the way in which you conceptualise yourself as being an autistic woman or woman on the autistic spectrum I think is quite important, because that s going to if you are selfassured and comfortable in yourself then that s going to have an impact on your self-confidence. And we know that there are many people on the autistic spectrum who have no self-esteem. And obviously the way that you feel about yourself and how you fit into the world is going to have a big impact on that. Can I ask you Robyn, I agree with all of that and I think it s terribly important that we make we stress that if you don t have a diagnosis, forgive me, you know, you re saying you were picked up at eight. Well, you know, I m seeing women who in their 30s and 40s who ve never been picked up. And the stress of feeling different and not fitting into society and having difficulties with a peer relationship really has led to mental health issues. And then people get referred into mental health services, and they go down a completely inappropriate route, because nobody takes an early developmental history to see this is an on-going problem rather than just a mental health issue. When we think about social interaction it s something that comes naturally to most of us. Some of us are better at it than others. That s on a spectrum as well. But if you think that the effort all the time about thinking through, so all your social skills and social interactions, it s not surprising and I know you ve said this Robyn, it s exhausting because you re constantly thinking about what you re doing rather than it coming naturally with a social instinct. - 3 -
I ve definitely had that experience. You can develop a serious mind if you re on the spectrum obviously. And, you know, that s a spectrum. But you might have to develop more of a cognitive serious mind. You might have some serious mind skills that come intuitively but then you build up other skills. But there s cognitive you have to think it through. And that takes a lot of time and, like you say, effort, exhausting, but also other people don t appreciate that. And they expect you to come up with an answer or a response very quickly. And lots of social interactions rely on maybe being a little bit flexible with the truth in terms of, you know, things like white lies, then that can make all sorts of things a challenge. What s lovely about that Robyn and people like you is your honesty and, you know, as you were talking about little white lies and the sort of things that we say that we don t really mean. But that s the nature of why people like you are just lovely to be with because your honesty is refreshing in our world today where people often say what they don t mean. Well, that s very nice. I m glad that it s appreciated. But it s very difficult being so honest. There s all sorts of things, very small interactions with people, things like with people that you don t know, for example, you know if a guy comes up to you and tries to chat you up in the street. Maybe if you re a guy on the spectrum maybe that will be maybe guys don t in general, autistic guys don t get chatted up by women on the street so often. But as a female regardless of being on the spectrum or not you do once in a while get approached by guys. And you have to be able to white lie your way out of it sometimes because that s all you can do. Simply turning the other way and ignoring the person doesn t always work, you actually have to say something to make it go away. So those kinds of things that can cause all kinds of safety issues for people on the spectrum. If you remember one of the MS conferences Liane Holliday Willey gave an example of, you know, when a guy asks you to his flat for coffee at eleven o clock at night has a very different meaning from the same guy asking you at three in the afternoon. And how she you know, she used to get herself into all sorts of scraps because she didn t understand the subtleties. As you say, you know, the safety aspect of women on the spectrum is crucial. It makes you very makes very vulnerable. What support or advice is available for women with autism who find themselves in these kinds of situations? I know Robyn you ve recently authored a book on this topic. Yeah, well, I mean, there isn t a lot of resources. I mean, it does depend on where you are in the country, but in general there aren t a lot of resources that are available around safety specifically for people on - 4 -
the spectrum. And I think that people and this goes for guys and girls, I think that people under-estimate the safety issues that people in the spectrum can encounter. Because I think that for people that don t know a lot about autism that they kind of think, well, if you can speak and you don t have a learning disability then you don t need to talk and you can just then live your life and get on with it. And that s not the case of many people on the spectrum. Many people really do need a lot of support. And there is, say for example, domestic violence if you are a women there is Refuge and there s Women s Aid and there s a few other charities. They re probably the two biggest charities in the UK. And you can call them, but they don t their staff to my knowledge at least aren t trained in autism. It s the same with the Samaritans, again to my knowledge they don t have training in autism. And you might need different support. And as Judith said, you know, if you go down the mental health route, you know, if you re diagnosed with a mental health condition, instead of being diagnosed with being on the spectrum, or if you need a mental health diagnosis in addition to being on the spectrum, because obviously you can have a mental health condition or illness and be on the autistic spectrum. They re two separate things. Then you re going to need possibly different treatment. And you re definitely going to need clinicians that know about autism. So, for example, if you have autism and depression then a typical course of CBT, which is Cognitive Behavioural Therapy, which is a standard treatment provided on the NHS, may well not work for you unless it s adapted for somebody on the autistic spectrum. For interest just to say that the National Autistic Society do train people in Samaritans about autism. Oh, I didn t know that. Yeah. It will be interesting I don t know the details of whether they actually have focused on the female presentation of the condition. I don t know that. But certainly it s something we could perhaps follow up. But then back to the diagnosis, I think all the things that Robyn s saying about what can you do about it, it is important to have a diagnosis because it s the starting point for providing this appropriate support. You know, in my clinical experience, I don t know what Robyn feels, but people I ve seen are so relieved to know why their lives have been different and why they ve struggled in school. And beginning to understand themselves and work out their own personal strategies is really so important. But it is worrying that post-diagnostic support for women in the spectrum is very sparse and, you know, there are areas where I think there s very little support. - 5 -
But I think for special groups and people linking with each other, which we ll talk a bit more about in a moment, is extremely useful for recognising there are other people like yourself. Would you agree Robyn? Well, yeah, I think from meeting people on the spectrum regardless of gender I know that the majority of people feel really relieved. Like you said, you know, to know why they have the difficulties. Because I think that even if the person s not necessarily putting it into words, a lot of people on the spectrum really feel how different they are to other people. And get very frustrated, for example, that they find a particular social situation harder than other people. Or that they find it so overwhelming, for example, a party or going to the supermarket. It could be anything because it s so dependent on the individual person. But that s frustrating. And you might not voice it as, oh, well other people find this so easy, but you might become aware that other people might be more equipped for going to parties and going to the supermarket than you are. And if you have a diagnosis then you ve got a frame to look at your life, if you like, it s like a way of being able to stand back so you can say, well, okay, well maybe I don t have going to parties and going to the supermarket skills, but it s about knowing, you know what your skills are and how you can use them. There s a lot of people on the autistic spectrum who are very talented in all kinds of things who often aren t really able to get into work because they don t have the kind of social know how. And with a bit of support they would make great employees and be very capable of earning their own money and going to work, which again would alleviate some of the issues with mental health, because going to work can be very good for mental health and obviously it s the right job and you have the right support. Now, I think both of you have mentioned the issue of identification and support, and I just wondered what researchers were doing on this topic. And I know Judith you ve been involved in the Autism in Pink project. And I wondered if you could tell us a little bit more about that. Yeah, now generally research on the topic of women with autism there s more interest now, and certainly they re [whipping 00.17.57] down on gender differences in the relationships with emotion and cognition and so on, on a more theoretical basis. And in the past, you know, Simon Baron-Cohen has certainly looked at gender issues. And even further back than that, you know, Christopher Gillberg in Sweden [unintelligible 00.18.17], they ve concentrated on looking at the different manifestations of women in the spectrum as of course Tony Attwood in Australia has given us a lot of insight. - 6 -
But in more research in the sense of looking at the differences and supporting there hasn t been much research. So that brings me to talk about the Autism in Pink project which is because it s an EU funded project and involves four countries, UK, Spain, Portugal and Lithuania. And the main aim was to learn more about women with autism in order that they can be better understood and supported and a better chance of fulfilling their potential. So these women were identified in each of the countries and an overall plan to look at their wellbeing, look at the difficulties they re experiencing in their lives. And then thinking about how we can support and help them, in addition to that raising awareness at government level on social policy. So I think this is probably the first project where we are working across different countries and looking at women in general as to how we can support them. And when will we be able to find out more information about this research, when will you have the results? Yeah, well we re nearly there. And we re having a conference in May 2014 in Lisbon where all the results will be presented. And the women who ve been involved in the project will be actually talking themselves about the results and how it s affected them. But the main aim is to change thinking and to have some learning packages for people not just in this country but across Europe. Robyn you ve been involved in this project haven t you? Yes. Perhaps you could say a bit more from your perspective. Yes, I think I ve got a lot out of it. And I think the other women I think that definitely some of them would feel the same way that it s been beneficial to meet other women on the spectrum and to talk about different areas. So there is it s called the PWY and it s a quality of life scale. It s different areas of life, so for example, personal safety. And we ve done workshops discussing each area and discussing kind of problems and solutions that we ve found. So I think that that s been very beneficial for everybody. I think that s been useful to learn from each other. But also I think that to meet people in for people on the spectrum to meet each other in a structured environment with an aim to achieve, I think that that can be really beneficial because it takes away a lot of the difficulties that you would find if you just met a bunch of women, you know, in a social [unintelligible 00.21.38]. So I think that a social benefit as well as there being a benefit obviously to people who know about the study, the people that receive the information and the quality of information will also be very different to other studies. - 7 -
In terms of, I think, the information will be more in depth and there will be a greater understanding, because it s definitely very clear to me that the researchers involved with the project are really getting perhaps under the skin is a good metaphor. Like a really good understanding of how women experience this because they re seeing the same group of women over a year or so. And so they re learning, you know, what kinds of things in life might alter that person s experience and how they might differ from one day to another. And I think that, you know, from a research perspective that I think that s a very worthwhile and useful aspect to the project. And also of course more importantly, you know, we ve been talking about strategies and coping and so on. As a result of this project there will be learning materials that will be published from the research. So there will be packages that people can use with the women on the spectrum. So it will have a more definitive outcome than just talking with women and getting their views and feelings. So it is a very complicated project in the sense it will actually hopefully make a big difference to the lives of people, women on the spectrum. Fantastic. Judith, Robyn, thank you so much for joining me today and thank you to everyone for listening. Thank you. Thank you. More information about the Autism in Pink project is available on autisminpink.net. [End of recorded material] - 8 -