I was interviewed by Richard Freeman in his Always Possible podcast and I decided to write up the transcript to make it more accessible. If you prefer to listen to it the link is here. It covers many autism related topics including why autistic people need to be leading the narrative, ABA, my research on autistic parenthood and other work I do.
Here is the transcript:
This is the possibility club with Richard Freeman. The podcast for adventurers in business, culture and education. Find out more at thepossibilityclub.org
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Ah brilliant, you’re here. Well good. Welcome to the possibility club, conversations with the people questioning the status quo and making change happen in business culture and education. I am Richard Freeman and before I introduce this week’s guest, I want to talk about I’m a celebrity get me out of here. Bear with me.
60 year old professional quizzer Anne Hegerty is currently still in the jungle. With all the trappings of modern reality television, those intense relationships and the goldfish bowl conditions and with the added sensory overload of trials of slime, kilos of cockroaches and the competitive drinking of offal milkshakes and so on. Whatever you may think of the program, there is something curious about the fact that the National Autistic Society have called this year’s series a big moment for autism and for autistic people. Anne Hegerty was diagnosed with Asperger’s Syndrome when she was 45 and she is very candid about the condition and what effect it has had on her life. On the program there are moments when she is clearly struggling more than her other campmates. With many trials she has been seen finishing early or been ruled out on medical grounds. For many people the idea of appearing in an environment like that is horrifying regardless of whether or not you have been diagnosed with Asperger’s syndrome, autism or not, these are not pleasant conditions but for someone who does have autism or is on the autistic spectrum to be forced to create deep relationships with strangers all on camera, of course, with some extreme physical conditions simply for the entertainment of others, it has struck many people as potentially being exploitative. So why have the NAS been so supportive? Well Anne Hegerty’s difference doesn’t seem to be the thing that defines her on the program. In fact, she seems to be able to help her campmates understand when it is she is finding things more difficult and more importantly why. And consequently the audience at home are beginning to understand a little bit more about when, why and how certain situations may be slightly more difficult for somebody with autism. And what the audience are seeing is, this is some one very high functioning this is somebody who has made a career out of television and comes across as somebody extremely intelligent but also there are times in which she is very vulnerable and that is writ large and seen on the screen but despite all that she is very much living her life on her own terms.
So the National Autistic Society said that their website has crashed a few times in the last couple of weeks for the sheer number of people seeking them out and wanting more information about what it is to be an adult with autism. Perhaps this is all a bit too rosy and I am being a bit too generous to such a program and naive to think it will be a catalyst for change but I do think it is indicative of something that is shifting. The language is more of neurodiversity now rather than of learning difficulty and the term neurodiversity is become more mainstream and more dissected and perhaps more normalised as we look more under the surface of how the brain really works and we start to see that more people like Hegerty are owning their autism rather than having to hide it or artificially conform to someone else’s idea of what is normal. My special guest on the podcast this week is Shona Davison. Someone who knows far more about this topic than anyone else I have come across and is doing more to demystify the lived experience of autistic adults than many. Following a successful career as a banking consultant, Shona is now a mother to two autistic children, a home educator, an autism educator and an autistic advocate. Shona regularly writes about autism for print and online media and is soon to publish a book on autistic parenthood (Note from Shona: this is an error, I am having a chapter published in a book, I haven’t written my own).
Shona was diagnosed with autism herself at the age of 38 and this became a catalyst and in many ways a mission to better understand and inform others about the condition resulting in the completion of an MA in autism at Sheffield Hallam University and has done her own pioneering research on the experiences of autistic parents, home education for autistic children and wider autistic wellbeing. Shona took some time a few weeks ago in November 2018, to talk to me about whether she thinks attitudes really are changing towards people with autism, about understanding what autism is and more importantly whether the world is adapting to suit autistic people rather than autistic people being forced to adapt to the world.
Richard Freeman: So Shona good morning, welcome to the Possibility Club, thank you for your time. How are you?
Shona Davison: I’m good thank you. Thank you for inviting me.
Richard Freeman: Absolute pleasure. What are you working on this week?
Shona Davison: Next week I have got some training at a school and I am going to talk about ‘female autism’ or autism and gender. So, I kind of, I don’t really like the term female autism as it implies there is one way of being autistic for women and another for men which I think isn’t true and it also erases non-binary people but it is true that women have been overlooked and weren’t getting diagnosed for a long time and it has been beneficial to recognise that it can be different sometimes in girls, more masking, sometimes can be more sociable, so I think it is good to educate people about that so that so more girls can be diagnosed but then we have to bear in mind that there are also many men who are also very good at masking and fit that profile and be a bit careful that we are not just saying it is women. So I have got to write a presentation for that, and I’ll deliver that at school, at an autism specialist school for their teachers next week. That’s probably my main bit of work. I’ve just finished my master’s, I am planning on applying for a doctorate but the one I want to do doesn’t start for over a year so I probably will have a little break from studying while I wait for that to start. Then I also have got my graduation next week, which will be nice
Richard Freeman: Oh congratulations. Something to look forward to. That point about late diagnosis, I’ve had adult friends who have had diagnosis late in life, that’s your experience as well isn’t it?
Shona Davison: I followed quite a common route in that I noticed my children, my son in particular was different and it was when he was getting his diagnosis and at first I thought it was maybe ADHD but then I printed off some information about autism to show my husband and as soon as I showed him the information he said “well that’s you isn’t it?” And I’d already been thinking it myself so the penny dropped. When I think back, I think I had read about Asperger’s syndrome in my twenties so a long time ago and I had thought it sounded like me but I just did a bit of googling and it’s all really medical and it’s based on what men are usually like so I just decided ‘no, no it’s not’ and I kind of put it aside and it’s only then when I realised that my children because they have both got diagnoses now, were autistic then I realised that yeah, it does fit me and what I was reading before which is the really medicalised description that’s not really a good description of autism so I can see why a lot of people especially women don’t identify with it or didn’t identify with it 20 years ago but do now.
Richard Freeman: So some people I guess in your shoes with two children who have a diagnosis and then having a diagnosis themselves would think that that is challenge enough in terms of trying to kind of create a way of living that meets all those needs yet you have taken on an additional challenge or an additional mission maybe, of trying to help many many other people try to understand autism better so what has driven you to do that and how are you doing that?
Shona Davison: Well, when it all went wrong about three years ago and we were having a lot of difficulties, my son was really struggling in school, my daughter wasn’t happy, and that meant me and my husband were stressed trying to sort out all the problems. I hadn’t had panic attacks for about a decade, I have always had anxiety but then they got really bad again around that time and I started having panic attacks after 10 years of not having them. So it all went wrong then and there wouldn’t have been any spare time to do any of the work, but we had a process of completely changing our environment. I no longer work in my old job, my son is home educated, I pulled my daughter out, this all happened over a period of time, I pulled my daughter out of her school and she now goes to a flexi-school so she is at school three days a week and home educated for the other two and these changes to our environment, I completely changed my parenting style as I learned about autism, so everybody is doing a lot better now. But then you start to think about how unfair it is, all the things that we don’t have access to. I shouldn’t have to home educate, people who home educate should be doing it because they choose to not because they have to, and it’s really not fair. I guess it is the injustice that motivates you, it’s not completely altruistic because I want to make changes for my family as well, not just for all autistic people but it has helped my family, me going through this whole process of learning about autism, understanding about neurodiversity and starting to appreciate that a lot of what the professionals say is completely wrong and looking at things more critically, that has helped my family as well and that has enabled me to hopefully try and educate other people.
And there’s a lot of autistic people doing it and people who aren’t autistic too but what I really want to see is more and more autistic people being enabled to go out and talk about autism not just their lived experience but I’d like to see more autistic people reading the literature and critiquing it. Because there’s a lot of people making money out of autism and sometimes they are teaching people things that are really harmful. There are some really high profile professionals who are saying things like autistic mums will marry extreme neurotypical men, which is not true the evidence says that we are more likely to marry other autistic people, and then the children when they fall over they will go to the Dad for comfort because the mum has the cold hand of emotion. You hear quotes like this and then you look at your friends, most of my friends are parents and the majority of those are autistic parents and you just know it’s not true and not only is it not true but by saying that you are making us more likely to have difficulties with social services, people judging us. I’ve had negative experiences with health professionals when I say I am autistic and then people feel obliged to hide the fact that they are autistic for fear of discrimination and it’s not an unjustified fear. We do get discriminated against so I just think it is wrong and we need more people challenging all the nonsense that you hear about, that’s in the media all the time. Most of what you read about autism is simply not true. It’s often not evidence based or if it is evidence based the evidence is really easy to pull apart and critique. We just need more people talking about it and giving good information and more autistic people preferably.
Richard Freeman: Yes I can imagine what it is like, well the idea of lots of other experts speaking in your behalf when as you say there is absolutely no reason why people who do have that lived experience can’t turn that into an evidence base. Where do you think this false narrative has come from? What perpetuates some of these myths or the problematic stories?
Shona Davison: Well human beings generally are not good at accepting difference so we have seen it with other groups. People used to get diagnosed with being gay, people used to try and cure you for being gay.
Richard Freeman: Still do in some countries
Shona Davison: Still do. Even left handedness. People used to get beaten for being left handed and they used to try and make people write with their right hand and so it tends to be something that humans do, we think that if something is different that means that it is broken and needs fixing, and that’s often not the case and I really think that eventually people will see that about autism. That we don’t need fixing.
Richard Freeman: Do you think that it is getting better and obviously because of people like yourself and the work that you are doing, there are more messages that are challenging some of these myths. But I also do see more visibly some of these challenges and there are some organisations that are getting higher profile, that are really championing neurodiversity in the workplace and the way that recruitment is done so I guess for me it looks like there are some green shoots of change but I don’t live with that experience in the same way, so I am sure that’s a bit of a sort of glossy picture, but overall do you feel that there is a little bit more understanding certainly in terms of support or infastructure or are we barely scratching the tip of the iceberg.
Shona Davison: I think it is definitely going in the right direction. I can remember, like I said about 20 years ago when I first wondered if I was autistic, I didn’t find anything then about neurodiversity. I’m sure it was there but I only had a quick look. But now even things like conferences, I started going to conferences about three or four years ago and I’ve seen a change just in that short time because the first one I went to was nearly all neurotypical speakers and then as time has progressed there is just way more that are autistic led and with autistic speakers at them. Or even ones that aren’t autistic led, like the NAS ones, the National Autistic Society, they have loads of autistic speakers at them now. So things are changing but you still find if you go to a conference, there is a high risk that there’ll be one that will make you really angry. So we’ve got a long way to go.
We are seeing more autistic researchers doing research like we had a bit of research released about ABA and PTSD, the problem with ABA. ABA I don’t know if you know but it’s a therapy that is all about trying to change the child, people say it is to teach them skills but really it is to make them seem more like a non autistic person, teach them eye contact and stuff like that. So we’ve just seen some academic research saying about PTSD with that and we’ve got to catch up because there has been all this really bad research saying how good ABA is for a long time, that has been funded by people who make money out of ABA. There is a big incentive for people to say how great it is. People aren’t getting paid for doing this sort of research often. I know so many autistic people who are doing academic research who don’t get paid, there is no funding for it. So it’s really slow progress and it’s very frustrating.
Richard Freeman: I can imagine.
Shona Davison: But it needs doing and I do think that progress is being made.
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Richard Freeman: Interesting your point there about ABA. I’ll make a declaration, when I was a student at university I trained as an ABA therapist and worked in a family home for about a year, this was about 15 years ago. As you say it was seen as the new progressive way of treating autistic children and I’ve been reading some of your pieces and I think it is very interesting that that is being critiqued.
Shona Davison: Some of the best campaigners against ABA are people who used to do it on autistic people or gave it to their kids and I think when you get people who have had that direct experience and then they have had a big change of viewpoint then that makes a more powerful narrative I think.
Richard Freeman: Undoubtedly and even at the time I knew very little about it when I started, but I was aware that it was a bit of conditioning, it was training. At the time, I was working with a five year old, sort of how to perform, a little bit and I can understand why that is very problematic now.
Shona Davison: We know more now about the effects of masking and effectively when you are teaching someone cos it can be done, you can teach someone to act like a neurotypical but we now know more about the problems of that and masking can lead to suicide. There has been research showing that it is linked to suicide. We know that outcomes for autistic people are generally not good. We have mental health problems usually, I don’t know that many autistic people who haven’t had mental health problems, they do exist but… and it’s not because of being autistic it’s because of trying to fit into a non autistic world and constantly being told, not explicitly but being judged all the time for your way of behaving as though what you are doing is wrong. You get socially excluded and you don’t alway know why and all that leads to stress and stress over a long period of time, you end up with mental health problems. So all we are doing when we are teaching kids to behave like non autistic kids is you are telling them the way they are isn’t acceptable, that’s not good for self esteem. And you are making them put in loads of extra effort compared to everyone else, and then they still end up not getting it quite right and being judged negatively. Well that’s not a good life for anybody is it? So we should be encouraging kids to be able to be themselves. As long as they’re not hurting anyone so things like giving eye contact, it’s actually for some autistic people it’s more difficult to hear if they are giving eye contact so it’s good to not give eye contact and it doesn’t hurt anybody so people just need to, for things like that, let it be. There is no need to put all this effort into changing somebody.
Richard Freeman: Are there any other aspects of everyday life where there is still a very long way to go or you have some very specific asks or ideas around what could be changed in order to make life less stressful for people with autism
Shona Davison: Some things are so huge that they would take decades to change. So for example, the education system. Some kids are having their lives ruined by being forced in to school and not everyone is able to home educate like we are doing. That really upsets me and it is not an easy thing to change. The whole education system is built around, well it’s kind of a one size fits all, and yes there are some specialist schools but there is not enough and actually we wouldn’t need to have as many if some relatively small changes would get made within schools. That’s the thing the education system is huge and hard to change but there are some small things that can, that are easy and inexpensive but then that is about knowledge and attitudes. That is a really big thing.
For everyday life, I guess a lot of it is about people being a bit more open minded and a bit more accepting. So as a parent, I think this is the case for all parents but probably more so if your child is autistic because then they are different, but then also again if you’re autistic you get a lot of judgement and it would be very helpful if people would understand that what works in their household, isn’t necessarily going to be what would work in someone else’s household. So I get given advice, not so much now, but at first when it was all going wrong and people would be giving you advice, stuff that you have clearly tried, like ‘they just need some routine’ well obviously we’ve tried that in an autistic family with autistic children. So it can be quite annoying. I have learned over the years to just ignore it.
I guess one thing that I would ask for is if people would be less judgemental when someone is having a meltdown, or acting a bit different, or going out in a onesie, my daughter still wears onesies in public she is 6 now and people judge. But I have to do what is best for my family and if she has got sensory issues and that makes her feel happier then that is fine, we just have to have a thick skin.
Richard Freeman: Absolutely yes, and all power to you for being able to do that but also to shout about that, I think that is really important. You are looking to do a PhD maybe in a year or so’s time after a little break from research. What do you want to look at with that? Have you got ideas about the thesis, the research area that needs some attention.
Shona Davison: There are so many things that I am interested in. My last bit of research was about autistic parenthood and one of the things that came up was accusations of fabricated and induced illness. So it used to be called Munchausen’s by proxy so people will say that, usually the mum, is making up the child’s problems for attention. Those accusations are one the increase, and they are often wrong. They are more likely to happen to autistic families because people just see autism as bad behaviour and also if the parent is autistic they are not always behaving in a way that an onlooker would understand. Some behaviours could be seen as being a bit shifty or dishonest, when that’s not the case like lack of eye contact. I’ve been told before that people can’t read my emotions from my face so because I have different kinds of facial expressions people can see that as suspicious as well, oh they didn’t seem… I also, I often process my emotions later so I can have a meeting about something and not be emotional and then go away and be upset about it later, when I have processed it. Or I also cry really easily, so all these things that make me different and my responses different, if someone doesn’t really understand autism, professionals and they are judging my family, they are more likely to see it as suspicious and raise flags and that does seem to be what is happening and people are getting accused, or not believed and getting accused of things that they’ve not done. So I think we desperately need research into that and I would like to do that. But there’s a ton of other stuff like ABA interests me, I would like that to not happen any more. But I think I want it to be something to do with autistic parents. There is quite a lot of research on being parents of autistic children but virtually none, there is a thesis that somebody did and there’s a bit being done in Cambridge that has not been published yet and then my research, that’s pretty much all there is on actually being autistic and a parent. So we need way more research into that. But it’s funny because a lot of the research that is done on parents of autistic children, the parents will be autistic because it is genetic mostly and that doesn’t get, often you read the research and they’ve not even acknowledged that a lot of them might be autistic. So you see really ridiculous research where correlations are used and people are saying ‘this could be the cause of autism, more people doing this or doing that’ and it’s like well do you not know that it’s probably because the mums are autistic and that’s why they are doing that thing and that’s the reason, so there is so much bad research about autism.
Richard Freeman: I am really fascinated about the work you have been doing around obstetrics and gynaecological services and the experiences of autistic women particularly during pregnancy. Can you tell me a little bit about that and the women’s network that you have been involved in at the royal college?
Shona Davison: I got involved in that because my sister was already doing bits of work at the royal college and she saw a position advertised at the royal college and so we decided to apply for it together. She has got quite a lot of experience of that kind of thing and I was looking for more ways of influencing services to improve them for autistic people so it was quite a good match. So now we both do that and I am the Equality and Diversity Champion along with another lady on the women’s network so I am hoping to help them as much as possible with things like the training or feeding back on documents, making sure that autism and neurodiversity is also on the agenda. For example, when people think of equality and diversity you often find that physical disabilities are considered. Usually neurodiversity just doesn’t even get considered at all. So things like when you are designing buildings, being careful what lighting you put in, things like colours, signage, they can be relatively inexpensive to do but people just don’t think of it. They were very keen to have me talking about this sort of thing and I am really enjoying doing that work so hopefully I will be able to have an influence on those sort of services.
Richard Freeman: For you, in terms of your profile and your role, how far do you want to go with that? Do you ever see yourself moving into politics, founding an organisation or charity or something that might further this really important work that you are doing?
Shona Davison: I don’t know because I am the worst decision maker
Richard Freeman: (Laughs)
Shona Davison: I will just see what opportunities come up and then take them if they look interesting. I have never thought of myself as political at all. I have only just started thinking of myself as an activist because I just think activist never seemed like me. But when you start to learn about these things which was by accident, when we found out about autism, when you start learning about these things, it’s pretty hard not to get passionate about it because, just because of the injustice. When you see people being hurt and suffering and other people doing it, unintentionally, but hurting them, and often making loads of money in the process, well it makes you really angry and that anger can often be a really good motivator, so yeah, I do want to keep helping autistic people but I am not exactly sure how. If I do a doctorate then research will help. It will help autistic parents, and I can help raise the profile of autistic parents, that would be good. If I can train people in social services for example, they will be people who are in contact with… It’s a bit of a worry, I often get asked, I did some training at CAMHS and somebody asked the question, so if we see a parent who we think is autistic, should we be writing to their GP or whatever and it’s a bit of a worry because actually while it has been brilliant for me to find out I am autistic and I have had loads of benefits from that, I do know that we also get discriminated against when you have got autism in your notes. So I never know how to answer that question. So I want people in social services and other professionals to be recognising that somebody could be autistic but that isn’t necessarily a bad thing it just means you need to not judge their behaviours negatively when there may not be anything negative behind it. In my research that I did for my dissertation, one of the things that people said, lots of words like ‘anxiety’, ‘fear’ were used about talking to professionals but two people, after they got a diagnosis said that they then got more understanding, so they saw it as a positive thing when dealing with professionals. So, I just think we need a lot more research about that cos it’s not just a case of noticing who is autistic but we need to make sure that people are not then using that in a bad way that doesn’t help the autistic person, we need to be making sure that means more understanding not more discrimination.
Richard Freeman: And not just autistic people but everybody needs to see more autistic people in the public eye, actors, musicians, politicians, where they are talking openly about their autism as a just a part of something they have to live with and in many ways a strength. Do you think that will happen?
Shona Davison: Yes. Definitely. That is one of the things that, because I have never wanted to keep it a secret. That’s just not me anyway, I am pretty open about most things. So because I am like that, one of the big benefits that I can have for the autistic community is being visible as an autistic person who despite many difficulties is also successful in some parts of my life. And it’s about talking about the difficulties as well as the good things, not just bigging yourself up all the time.
I am quite happy being honest and open about that sort of thing and I do think that helps other people, they are more likely to want to identify, to go and get a diagnosis or just maybe self identify, not everybody goes and gets a medical diagnosis, they are more likely to do that, they are more likely to recognise that they are autistic themselves, they are more likely to then be open themselves and that is all a good thing, I think. The more people who are out, that’s one thing I can easily do, just talk about being autistic.
Richard Freeman: There are quite a few very very well known and influential people in the arts and in science that are known to have been, some of them quite severely autistic, yet that is not part of their story. People who have had diagnoses, from Andy Warhol, to James Joyce, to Tim Burton and the actor Dan Ackroyd and so on. Is it right that it is not really a big part of their story because it is just who they are or do you think they should be more made of it.
Shona Davison: I guess it’s a personal decision, isn’t it? Who knows, I’d be interested in knowing the reasons, it could be that it is just not a big deal to them, it could be that they are worried about the stigma, and it’s a justified worry, so I think the more who are shouting about it, it’s great but not everybody wants to do that do they, they just want to get on with their lives. Not everyone has the same passion for autism as I do, I guess.
Richard Freeman: (laughs) Well I hope that changes, and I think that the work you are doing is really remarkable. How can people find out more about your research and your writing and if they want to book you if they want you to come and talk to them or if they want some training which I think everybody should do. What is the best place to find you?
Shona Davison: I have got a website, shonadavison.co.uk and it is Davison without a second D everyone always spells it wrong. I am easy to find on twitter and facebook. I am @ShonaDav on twitter and I usually try and reply to all my messages. I am starting to get a lot more so I do miss them sometimes. If you go on my website you can email me as well.
Richard Freeman: Well we’ll put links to all of those things on the accompanying blog. It’s been a real pleasure to talk to you and to learn more about the work that you are doing and the mission that you have. Thank you very much.
Shona Davison: Thank you, thanks for having me on.
Richard Freeman: No not at all. Good luck with it all.
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That was my chat with Shona Davison. Thank you to her, I learnt an awful lot speaking with her and appreciate her time and generosity. You’ll find links to everything that we talked about on the always possible and possibility club websites.
Do check out our extensive range of interviews and chats with change makers in business, culture and education at alwayspossible.co.uk/podcast. If you like them, if you liked my chat with Shona there, please tell us, subscribe, write a review, share it with friends and contact us via social media if you’ve got an idea for a future guest. The possibility club is powered by always possible a consultancy that runs transformational workshops for small and medium businesses who want to make better decisions or unlock some practical thinking around a noisy or seemingly unsolvable problem. These are fun, serious, practical and mind blowing workshops that are guaranteed to get your ideas moving again. You can find out more about our workshops, and our work and our research and evaluation studies at alwayspossible.co.uk.
We’d love to hear from you, if you have some ideas about how we may collaborate with you. I’ve been Richard Freeman from always possible and this podcast is produced and edited by CJ Thorpe-Tracey for Lo Fi Arts. Thanks again for tuning in, for sharing this little moment with us. I like to imagine that you have been doing the washing up or walking the dog or something equally mundane and we’ve been able to fill your mind with some new thoughts and ideas. Tell us what is it that you do when you listen to the podcast, I’m very curious to know. Until next week, take care, look after yourself and speak soon. Bye bye