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Transcript of Shona Davison interview by Richard Freeman from Always Possible

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

… Intro music …

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.

… Music …

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, 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.

… Music ….

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 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

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

Tony Attwood is coming to Sheffield

Tony Attwood is a clinical psychologist, an author and well known in the field of autism.  I cite his work often in my writing. He is very well respected and brings large crowds to conferences, so can command a large fee.  He is not autistic and speaks about us from this perspective (I am aware some speculate that he is autistic but either way he others us – autistics particularly those in denial can be ableist too).

Tony Attwood is coming to Sheffield, my home town. I am very unhappy about this. I have seen him speak twice at National Autistic Society conferences and I believe he has a negative impact on the autistic population.  Many of his descriptions of autistic people are based on false stereotypes and he makes sweeping generalisations that are not based on evidence. He is very charismatic and witty and that is probably why he is so popular as a speaker.  The problem is he gets his laughs by making jokes about us.  I saw him jokes about suicide, autistic virgins and the ‘risk’ of falling in love with us.  I was sat in the audience as a newly diagnosed autistic person. It was the first time I realised what people thought of us. It wasn’t just the jokes that hurt, it was also the reaction of the professionals sitting in the audience – the room erupted with laughter.  I tried to stay as I didn’t want to make a scene but I ended up leaving in tears.

I do not want this event with Tony Attwood to go ahead.  There is not much I can do to stop it but I am going to at least make sure that as many people as possible know why I am unhappy so those who attend will listen to what he says more critically.  Times are changing, autism understanding is improving. Tony Attwood needs to keep up. We are not going to accept professionals ridiculing us for entertainment or contributing to the spread of  inaccurate stereotypes which further stigmatise us.

What can we do about it?

Firstly, I intend to blog. I am going to use a recent interview to highlight some of his views and his jokes and why I believe this harms autistic people. It is an hour long interview and so many topics are covered and there is a lot that needs to be challenged. I will blog about some of these topics individually. I will ‘fact check’ some of his assertions using the literature and my own experience as an autistic parent and autism researcher who engages with autistic people every single day.

Secondly, if this event is to go ahead we need autistic people there.  The prices are astronomical (£200) and even with a discount for parents of autistic children (which only applies to some autistic people – no discount is advertised for simply being autistic) the tickets are still very expensive.  We are often priced out of the market.  Therefore I have set up a crowdfunder to get tickets for autistic activists.  I want autistic people there, tweeting, broadcasting, critiquing, blogging and challenging. Already three people have volunteered to do this.

Thirdly, We need a protest outside the event with people handing out leaflets. I do not want to organise this. If anybody else wants to please go ahead, I will help in the background with any research or promotion that is required.

Future blogs will go into much more detail but here are just a couple of examples of the kinds of things that need challenging.

Tony Attwood Quotes from this interview

Tony Attwood: One of the issues is emotional maturity, this is someone who intellectually is PhD, nobel prize winning but they have the emotional maturity of a 15 year old so this can be quite embarrassing at times

Richard Fidler: (laughing) How about the kind of degree of romantic attention a man with Asperger’s might be able to give to a partner, a potential partner

Tony Attwood: Part of Asperger’s is having intense interests, usually for knowledge and information but it becomes a person and is called stalking.

Tony Attwood (on ‘aspie’ mums): … but again it maybe the cold touch of affection, rather than the genuine one and so that is more expected from a mum and we often find that an aspie mum marries an extreme neurotypical dad and so it is Dad who gives the affection, so when a child is upset and falls over who do they run to? They may run to Dad not mum.

Tony Attwood: … one of the characteristics of Asperger’s is having a favourite child who can do no wrong and the others feel very jealous that this one has a lot of attention

Richard Fidler: To reach that man, particularly the man with Asperger’s do you then have to explain to them the logic of the need for change.

Tony Attwood: Yes if you don’t change you are going to lose your housekeeper

Richard Fidler: (Laughter) Presumably you don’t say that when she’s in the room

Tony Attwood: No I do, and she says ‘yes you will’. (Laughter from Richard Fidler) Or she’ll say ‘Look, you’ve got to get a diagnosis because if you haven’t got Asperger’s, you’re a mean bastard and I’ll leave you’

An example of a false claim

I assume that his views on our marriages and parenting have come from his clinical work as the literature does not support his assertions.  For example Tony Attwood claims that we marry ‘extreme’ neurotypicals – that is not what I see amongst the many autistic people I know and research shows we are more likely to marry other autistic people (Nordsletten et al., 2016 ).

How do these sorts of events hurt autistic people and their families?

This will get a full blog post but here is a short version:  When a speaker, particularly one who is considered an ‘expert’, goes on a stage and talks about us in a derogatory fashion, othering us, laughing at us and encouraging others to laugh at us too, they send a message to the audience that this is ok.  Autistic people are often bullied and excluded for their whole lives – is it any wonder when those who are supposed to be supporting us do it too? The lack of outrage from the audience at the NAS conference upset me as much as Tony Attwood’s jokes? They laughed along.

False negative stereotypes engender stigma and discrimination. This discourages openness about being autistic, and voluntary identification (diagnosis).  The goal should be to create a society where it is safe to be openly autistic, so that our autistic children can have visible autistic role models. We know that ‘masking’ (trying to act like a non autistic person whether that is conscious or not) is linked to higher suicide rates (Cassidy et al., 2018).  Autistic people (Asperger’s syndrome) are 9x as likely to report suicidal ideation compared to the general population (Cassidy and Baron-Cohen, 2014). Any one who is ok with autistic people being publicly mocked by well paid professionals who are supposed to support us would do well to bear that in mind.

Attwood has a large reach. People listen to his talks and believe him.  Humans generally are not good at critical analysis.  One talk from Tony Attwood can undo many hours of unpaid work done by autistic activists who are trying to teach about the diversity of autistic people and who are fighting for our human rights.  I want to put pressure on organisations to stop hiring any non autistic speakers who treat us like this. I want Tony Attwood to change his talks so they are respectful.

I would love to hear my readers’ opinions on his views, please leave a comment. Does anyone have any other ideas about what we should do to protest this event?

 Further information

An open letter re disparaging autism humour


Transcript of ABC interview with Tony Attwood

The following is a transcript of this ABC interview with Tony Attwood.  It is on my blog because I am planning on using it as a basis for many future blog posts. It makes a great example of how professionals who are supposed to be helping us often cause harm. This transcript is full of inaccuracies about autism, autistic people and much of the assertions contradict both research evidence and my experience as an autistic person who engages with autistic people every day.

Richard Fidler:  Professor Tony Attwood returns to conversations today. Tony is a clinical psychologist and one of the world’s leading experts in Asperger’s Syndrome. Asperger’s is now a reasonably well known form of autism. People with Asperger’s tend to find complex social situations confusing and sometimes distressing, they tend to focus intensely on the things that interest them. They have difficulty reading subtle cues in conversation and they have a strong preference for routine and consistency. So what happens when that person gets together romantically with a non aspie, someone who isn’t on that spectrum, a neurotypical as the specialists call it. How does that work? And what happens after they get married and have kids? Tont Attwood says, for all their social awkwardness, people with Asperger’s do have some compensating strengths. They tend to be steadfast and loyal. They are likely to have complete mastery of their special interests and in the courtship phase they can be powerfully and intensely romantic. Welcome back Tony.

Tony Attwood:  (Laughs) What a lovely description, I think that should be the new diagnostic criteria.

Richard Fidler: Yes well, the example I’ve given and we talked about this last time you were here was Mr. Darcy I think from Pride and Prejudice and you sort of … if you can diagnose a fictional character he’d seem to present as a classic sort of Asperger’s lover, if you like

Tony Attwood: Indeed, socially clumsy but endearing.

Richard Fidler: Endearing indeed. How easy or difficult is it with someone with Asperger’s to form friendships in the first place?

Tony Attwood: This is one of the first things that we look for, is a difficulty with making and keeping friends. Sometimes being very shy and introverted and withdrawn and on the periphery of social occasions or they are what I call Italian drivers, they don’t see the signals, the red light to stop the no tailgating signs.  They are very intense and it’s the intensity and the intrusive nature is abrasive to other people so they are then rejected but then disappointed that I want to have friends but they keep pushing me away.

Richard Fidler: yes yes I suppose it’s seen as a lack of courtesy, when it’s not in fact, it’s just an inability to read signals or those social cues.

Tony Attwood: It’s important to recognise it is ignorance rather than being rude, so the person needs guidance rather than criticism.

Richard Fidler: Would many people with Asperger’s like many people with more classic forms of autism just rather be left alone anyway to begin with or

Tony Attwood: I think it is more a question of needing solitude throughout the day. Can cope with socialising for a short period of time but do so with intense intellectual energy and effort and do it successfully but it is what I call Cinderella at the ball at midnight, they can do it for a while then the wheels fall off and they then have a social migraine and then I just don’t want to talk to anyone.

Richard Fidler: I have had social migraines many times (laughs) I’m just thinking, even though I might not be on the spectrum in that sense. Might a person with Asperger’s find it even harder than most to … put themselves out there in a dating sense.

Tony Attwood: Yes, because they haven’t had many interpersonal experiences, they’ve observed but they need knowledge and the way they get knowledge is often by watching Hollywood movies. Which gives you the script the flowers, the chocolates, the phrases but the trouble is the moment that couple get married the credits come up and you’ve no idea what to do next.

Richard Fidler: Are you serious, many people with Asperger’s they treat movies like they, they will study a movie for that social script

Tony Attwood: Absolutely and soap operas too because if you want information on people but you are not included then in a voyeuristic way you watch films and that gives you whether it be fiction or movies, information on how to have a romantic relationship.

Richard Fidler:  If that person is keen to start dating what are some of the things that give the dating game that extra layer of difficulty.

Tony Attwood: I think it is reading the signals of not to be too intense, I think is one of the problems there but it’s also an inherent feature that can become more important later on of knowing the thoughts and feelings of your partner especially when they need compassion, affection, consoling whereas the person with Asperger’s may be very good at their work, their practicality but they then give a practical solution where in fact that person just wants you to listen in a sympathetic way. 

Richard Fidler: Is it harder for a person with Asperger’s to read both attraction in another person’s eyes and an absence of attraction

Tony Attwood:  (Laughs) This is a major problem, flirting. And if you’ve got someone who has great difficulty reading body language, the most subtle and complicated body language is in flirting and it is often done very badly.

Richard Fidler:  Is it worse for men than women in these cases?

Tony Attwood: I think it is, women have their own issues because there are certain expectations of how you are expected to behave, one of the things I find with the women with Asperger’s they often have low self-esteem and feel they are not worthy of a quality relationship and become attracted to those who may not be good for them and I see a series of inappropriate relationships because of a lack of self-esteem.

Richard Fidler: A woman in such situations, would she be a target for manipulation then?

Tony Attwood: She’s a target for manipulation and date rape, because she hasn’t got a group of friends to check out character, she’s not good with that radar of spotting character, may not recognise that this is not a good place to be and there’s alcohol here etc and the person tends to take on board what they say not their intentions and so can be in very inappropriate situations so often when I talk to women with Asperger’s, rape has been an experience.

Richard Fidler: Men with Asperger’s when they are trying to flirt, if that is what they trying to do, or trying to make that connection with a woman, they are going to very likely say something entirely awkward or wrong or something that goes over badly

Tony Attwood: It does. One of the issues is emotional maturity, this is someone who intellectually is PhD, nobel prize winning but they have the emotional maturity of a 15 year old so this can be quite embarrassing at times

Richard Fidler: So that is a factor that is working against that man who has Asperger’s what are some of those other factors though that might make him quite attractive to… 

Tony Attwood: Oh people fall in love with an aspie otherwise it would have died out years ago so I think in society and evolutionary terms, many advantages, advantages in terms of their knowledge and what may be appealing is their expertise in a particular area, their honesty, integrity, their loyalty in a relationship, maybe boring for some, but there is something that is attractive about someone who is socially needy, so you are getting two people together, often someone, the neurotypical, who is socially skilled, so what I call an extreme neurotypical, gifted and talented in working out the minds of other people, can then get into the mind of the person with Asperger’s and see the heart not the behaviour and that makes a difference

Richard Fidler: Oh so a kind woman in that situation might be able to see and love the vulnerability that’s there. 

Tony Attwood:  Indeed, often that person comes from the caring professions. So obviously when I see children for a diagnosis the question is, does the apple fall far from the tree? And often that is the case, so Dad maybe engineer, accountant, medicine, information technology and mum’s a social worker, nurse, psychologist etc (laughs)

Richard Fidler: (laughing) How about the kind of degree of romantic attention a man with Asperger’s might be able to give to a partner, a potential partner

Tony Attwood: Part of Asperger’s is having intense interests, usually for knowledge and information but it becomes a person and is called stalking. (Laughter from Richard Fidler) And what the person may do is to take a fascination, when he says to be there at 7.30, he is there at exactly 7.30 with the flowers and the chocolates and he almost has a script which can be very appealing but also has  a sort of what I call a Peter Pan charm, he’s still got his train set, isn’t that cute? (Laughter from TA) And then when you are married he spends all his money on his train set. (Laughter from both) So all those sort of things can occur

Richard Fidler: So that level of attentiveness, punctuality, steadfastness that, I’m here for you, I’ve done everything right, I’ve thought through the whole thing beforehand, I have given this so much preparation and thought, that can be quite touching?

Tony Attwood: It can and it can be hard to resist because you have a feeling that the relationship is going to be wonderful because they so much adore you

Richard Fidler: How do expressions of affection work for someone with Asperger’s or an Aspie?  By the way is aspie is that seen as derogatory or not derogatory or how does that word sit these days?

Tony Attwood: It originally comes from Leanne Holiday Willie who has Asperger’s syndrome and she uses it as a short form, Aspie, in a positive sense, so it’s not a derogatory term,  I hope it never becomes a derogatory term, so that is where Aspie comes from

Richard Fidler: Back to my question then how do expressions of affection work for an aspie? do they need them, do they need that ‘I love you’, the hug, the kiss and all that

Tony Attwood: Ho ho ho this is a big problem, I will talk to couples and the neurotypical wife will say ‘but he never says I love you’ and then he turns round and says ‘but I did’. ‘When?’ ‘On the day we got married, why would I need to say it again? Have you got Alzheimer’s, have you forgotten?’ (Much laughter from the Richard Fidler). ‘Why should I buy you dying flowers? Why should I squeeze you? How does squeezing you solve the problem?’

Richard Fidler: (Laughter) How does a statement like your need for me to tell you I love you comes from probably incipient Alzheimers, how does that go over as a kind of… (Raucous laughter)

Tony Attwood: Well it’s not a good one because the issue then for the neurotypical is a sense of emotional loneliness, that they are not reading the signals of needing just a word or two of affection, very good at practical problems and in fact that is the source of their employment, is that they are very good at solving problems but not emotional problems

Richard Fidler: So is marriage particularly attractive to someone with Asperger’s then, cos that, you there pointed at that moment where you exchange vows, the vow is clearly what’s important here to the aspie if you like, is that right?

Tony Attwood: It is, but they are looking for someone to replace Mum, with unconditional love and affection, and to organise, plan my life, steer me through social situations, sometimes to do the budgeting all those sorts of things, it’s a question of I think, sometimes the person with Asperger’s saying who do I need? I need someone who is socially skilled, sees through the façade of the Asperger’s syndrome to the real me, and as soon as they spot that person, they pursue them until the person ends up not being able to resist the advances

Richard Fidler:  Sometimes someone needs to be needed and I suppose under those circumstances that can work out quite well but it seems like it needs to be clearly understood

Tony Attwood: It does and it is needed from both sides and that can be a problem of the balance of the need and the support, today we use the term partnership rather than husband and wife and there is an expectation of balance and that’s difficult.

Richard Fidler:  Hugging that’s a problem then, hugging is a big problem sometimes

Tony Attwood: It is and kissing and gestures of affection and things that neurotypicals feed on and enjoy and expect in a relationship. Here I use the phrase cactus vs a rose where the aspie is a cactus where affection is a cup of water a month with a prickly exterior to protect a vulnerable interior but is ok to be some distance from other cacti, and I say but your wife is a rose in a rose garden and she needs mulching and tenderly looking after in an English county garden otherwise she wilts and dies.

Interview: Why might sex present a bigger problem for aspies than for the rest of us Tony?

Tony Attwood:  A problem in many ways. Sometimes too much or too little. Sometimes too little, as I was talking to a couple and the wife was in tears and said we haven’t made love for four years and so on and he turned to her and said why would we want to make love, we’ve got enough children?  So it is recognising issues of intimacy that can be a problem. Or by not having had many relationships, but having an intellectual curiosity the source of information on sexuality can be pornography and that leads to certain expectations of what to do in intimacy which may not be agreeable to the neurotypical.

Richard Fidler: Oh my, so this is the movie script once again, you look at movies but in this case it might be pornographic movies to get that script

Tony Attwood: These are the x rated movies and not really understanding that this is in many ways I suppose fiction

Richard Fidler:  Oh dear, oh dear right and you wouldn’t necessarily be able to perceive the weirdness of pornography, I suppose, and how strange it is in so many ways

Tony Attwood: Well it’s not a sexual documentary or a ‘how to’ guide.

Richard Fidler: I suppose this raises the whole question of I think what Helen Garner sometimes calls it ‘Eros’. And when she talks about eros between people, it’s that very old idea the ancient greeks talked about the idea of a nimby erotic actually Eros needn’t be, it’s that kind of quickening of spirit where you read one another very quickly and it’s like meeting your perfect dance partner and you are dancing together very very quickly but with your mind or with your voice and with your body language and all of those things

Tony Attwood: It’s becoming one, it’s resonating, it’s harmonic resonance in terms of emotionality but this also covers areas of happiness and often the person with Asperger’s has great difficulty resonating with the happiness of others and find that’s quite uncomfortable and wanting people to be emotionally with a very limited range because of not knowing how to be euphoric with other people, to be of one mind and have a synchrony of movements, it can be very difficult

Richard Fidler: Nonetheless can there be those moments like with Mr. Darcy when he makes his second proposal to Elizabeth Bennet and says absolutely the right thing that chimes with her so profoundly in a way that no one else ever will for the rest of her life

Tony Attwood: Yes and it must happen or otherwise they would never have a partner (laughing)

Richard Fidler: They would never get married (laughing)

Tony Attwood:  and sometimes there can be almost an unexpected flash of inspiration but for the NT, the neurotypical, they are wanting those moments every day and they are yearning for what happened five years ago because it was wonderful

Richard Fidler:  Neurotypicals must seem really weird like why do you want to keep doing the same thing again and again and again when you have already made the case, it’s kind of like going back into court and making a case every day

Tony Attwood: Yes I’ve proved the point, have you forgotten, I have other things to do, I have got to fix the fridge (lots of laughter).

Richard Fidler: So romance is like something a, it’s a process that you resolve in the end and there’s an agreement or some kind of contract that is entered into, and after that you needn’t renegotiate the contract

Tony Attwood: Yeah, this is one of the problems when I talk to couples, the neurotypical wife will say he was fantastic courting but the day we got married I saw the other side, he won the prize he didn’t have to try and he went off with his train set

Richard Fidler: (laughter) So there aren’t really enough examples then of the kind of a script if you like, a movie script of.. you don’t see this, I’m just thinking as you say this, how many movies really are about the business of marriage, I think Alan (inaudible) was talking about this too, almost none.

Tony Attwood: No and mature relationships too because it’s not cool, it’s not exciting but it is needed because that becomes a source of information for those with Asperger’s syndrome

Richard Fidler: Right so they don’t have the movie script to look to for the everyday ins and outs of a marriage that has been conducted or a partnership that has been conducted for a long while

Tony Attwood: Yeah

Richard Fidler: Someone might be extremely successful in work, someone with Asperger’s but not at home. Why is that?

Tony Attwood:  It’s two different environments and what we find is the person with Asperger’s may be able to socialise, engage, process information socially and emotionally at work but when they come home they are absolutely exhausted and the shutters come down and you see a different side it is what I call Dr. Jekyll and Mr Hyde there’s almost two characters and there has been a phenomenon called the Cassandra complex. Cassandra had the gift of phropecy but the curse where no one would believe her but then the neurotypical talks to people about their partner’s challenges socially and they say ‘Noooo, he’s the life and soul of the party, he tells such good jokes, he is great’ but you don’t see him when he leaves the party

Richard Fidler:  You mention there the desire for the aspie to fix problems when sometimes when it is a woman who is the neurotypical they just want to be listened to, I’m just reminded of a classic scene in a really underrated movie called ‘White men can’t jump’ where Woody Harrolson is in bed with his girlfriend and she says to him ’honey, I’m thirsty’ and he says ’oh I’ll get you a glass of water’ and she goes, she gets really angry with him and she says ‘no, you get this so wrong’ and he goes ‘what are you talking about?’.She says ‘you are always trying to fix things you men, I don’t want you to get me a glass of water, I want you understanding, I want you to empathise with my thirst right now’ (Laughter) and he gets really angry and walks away. Isn’t this really just a common irritance between men and women maybe?

Tony Attwood: It is, but it’s an amplification. When I talk to the say the husband with Asperger’s I say look, in your job you are employed to solve problems, all you have to do is listen. But you need to listen showing attention, you need to do what I call bovine noises. Mmmm, ooohh, mmm etc. Women do this all the time to each other when they are talking, mmmmm oooohh really? And that is what they want from their partner, so I say look guys you don’t have to study books all you have to do is attentive listening and she’ll love you for it 

Richard Fidler: (laughing) but it is inauthentic, it’s inauthentic, that’s why I think, now we are talking about men and women I think it’s really kind of interesting in that sense too, why can’t I fix the problem? I want to fix the problem, I want to fix the problem.

Tony Attwood: And that is one of the major challenges and the answer is, it’s better to be fake than nothing at all

Richard Fidler: (Laughter) You mention there that an aspie might have a limited amount of social energy too, does that mean once you have partnered up and got married that the socialising will fall away, that you once did

Tony Attwood:  Yes this is where the neurotypical may make more adjustments than the aspie and where previously they are often the sort of person who is energised by socialising, is gregarious, the life and soul of the party and then realised that their partner is exhausted by it, doesn’t do it easily, endures it and so on, so they say ‘well ok, we won’t go out’ etc so their social life starts to become less and this is where I say Asperger’s is infectious. If you live with an aspie you become aspie as a survival mechanism, you don’t cope with change you reduce sensory sensitivity issues but social life becomes an exception not a standard every day experience

Richard Fidler:  If it’s not diagnosed in that partner, particularly the male partner, does that mean friends are likely to fall away anyway because oh I just can’t sit next to him and do this again, I mean if it is understood that the person has Asperger’s you can actually say look we need to stop talking about this now and no offense can be taken, does that mean that there is a greater reluctance for people to want to socialise with that couple as a result of the aspie partner?

Tony Attwood:  There is because the person is at a dinner party and they can cope with an hour, then after an hour (laughs) I’ve known some actually fall asleep at the table or they do everything they can to look at their watch to imply I can’t do any more and they can’t do any more but the difficulty is their partner wants to socialise they’ve only had a little bit they have had a taste but then it has been taken away because the person can’t cope any more. 

Richard Fidler: And so that can lead to real resentment and cracks in the marriage then at that point can’t it between the neurotypical person and the person with Asperger’s. When that happens, will the person with Asperger’s, is that person likely to be unaware that these cracks are appearing in the marriage?

Tony Attwood:  Oh very much so, they are often not aware of that and so when the wife will talk about these sort of things it’s ‘what no, I haven’t noticed that?’ and I say to the wife, the NT are you happy in the marriage? ‘No, I have problems’ and I talk to the aspie, ‘How are you?’ and they are like ‘oh I am happy’  and when the wife says I am not ‘really? But you never say’.

Richard Fidler: Maybe the problem here is one of assumptions, we kind of all assume we share an ideal of love, is that the problem here in some ways?

Tony Attwood: It is and it is one of the things I often ask, what is your definition of love and a person with Asperger’s said a beautiful one ‘It’s a euphoric mood, without logic’ (laughter). I think that’s so good, so often the concept is ‘what is love?’ sometimes by practical deed, or I don’t know, I said what is love ‘I don’t know the correct answer’ was the reply

Richard Fidler: Is it easier for the person with Asperger’s to write that down rather than say?

Tony Attwood: Oh this is a very valid point, I know one couple where the husband writes such exquisite poetry that his wife fell in love with is poetry and so within Asperger’s it’s a difficulty conveying your inner thoughts and feelings by speech but can do it by music, actually by creating music or playing music or photographs or paintings and drawings and so there are many famous artists with Asperger’s syndrome who have the remarkable ability to express the self and emotions and especially love through art but not conversation.

Richard Fidler: See right there that confounds the stereotype. I mean when someone is a bit artless in what they say now they used to go ‘oh they are probably on the spectrum or something like that’ but what you are saying confounds that, there is something wrong with that stereotype

Tony Attwood: It is, it’s making the assumption is that you can look at somebody and talk and express your inner thoughts and feelings, it’s through the speech. It’s the through the speech that is the difficulty. But if it is to compose music, and in my clinical experience I have known a number of famous artists, authors, playwrights etc who have the characteristics of Asperger’s and in their plays and in their literature it’s phenomenal in their insight into people but it’s look at me and tell me what’s difficult.

Richard Fidler: Do you know as you say this I am thinking, very often I find over the years musicians are tricky to interview by and large, they are not easy to interview they don’t seem to like it very much they, these are people whoican write the profoundly moving and chattering songs, so resonant with feeling and thought and emotional reflection and all that, but find the speech end of things not so easy

Tony Attwood: But that is what the neurotypical partner falls in love with because they see love but it is not in the conventional way

Richard Fidler:  What is behind the desire for a life partner then, from that person with Asperger’s? Is it that mother figure that they are looking for?

Tony Attwood:  yeah and someone who is going to guide me socially although sometimes the guiding is ‘why’ve you kicked me under the table?, you just kicked me, why do you keep going like, why are you going shhhh and it’s a good joke but you have told it before and it is a religious joke and you’re

Richard Fidler: You’re talking to the archbishop of Canterbury {laughing)

Tomy Attwood:  Exactly (lots of laughing) and you are not realising that this is not the right context for this joke

Richard Fidler: So this can really lead to a fractured marriage then over time, the kind of things you are talking about it’s very easy for this to happen between the person with Asperger’s and the partner that doesn’t have it

Tony Attwood: Yes and it may go on for decades and that can be a major difficulty in terms of how do each of them cope often the person with Asperger’s says ‘my wife makes expectations of me but I don’t read the signals so how can I give it?’

Richard Fidler:  So then the person without Asperger’s may well bail from the marriage

Tony Attwood: Well you should know, we’ve been together for 20 years you should know this, and no he doesn’t and sometimes it can lead to a disintegration of the relationship, of living apart either emotionally or physically.

Richard Fidler:  You mention the special interest aspect of the person with Asperger’s, they are going to be into this or that this special thing, the cliché is it is cars or computers etc etc maybe there is something to that.  The special interest aspect of that person with Asperger’s that might be terribly charming at the start of the relationship, does the charm wear off after a while? 

Tony Attwood: (Laughter) Yes indeed it does and here sometimes the partner says he loves his computer more than me or he spends more time on his computer games than with me and so there is a sense of jealousy that can occur.

Richard Fidler: Can this lead to a kind of a secret life that a person with Asperger’s has, they may conduct all of these secret activities that they don’t care to share with the partner in their life?

Tony Attwood: Well yes cos they are going to say no and want them to do stupid ridiculous waste of time like sitting together and hugging, yes

Richard Fidler:  You found there was one partner in the UK that after the husband left there was a special interest in cars

Tony Attwood: There had been during the relationship but he was so secretive about it that when they separated and the lawyers got hold off who is going to get what, he had about 20 vintage cars stored all over the UK that she didn’t know about but actually were registered in her name and it’s almost like having a secret life and this is where there can be a contradiction in Asperger’s. Usually the person is self-appointed revealer of the truth, they are very very honest to a fault but sometimes if they should lie, will lie in a way that you can’t see the cracks and are incredibly believable.

Richard Fidler: Infidelity. I would imagine that infidelity would be a low risk thing in this situation

Tony Attwood:  Indeed, and if you’ve had previous relationships where infidelity was a heartbreaking experience you have got somebody who is steadfast, who is going to be there for the rest of your life and so on and that can be very appealing, especially for bringing up children.

Richard Fidler: What about the man in the relationship has Asperger’s and his wife goes and has an affair, will the man in a relationship the man with Asperger’s feel betrayed or will he see the rationality of her needing someone to give her a hug and a kiss and say he loves her every day

Tony Attwood: I had this as a topic last week and the husband is very much in love with his wife and will do anything for her happiness and he said if I can’t give you social romantic experiences, you need it, go find it somewhere else but I still want to be married to you.

Richard Fidler: You think it is the marriage then, the contract if you like

Tony Attwood: yes

Richard Fidler:  You began to start observing these relationships between these two cultures, that’s a good way of seeing it from a very young age, tell me about this please

Tony Attwood: Well yes, my parents divorced when I was a year old and my mother married when I was 6, an engineer (laughs) and he was aspie. That’s why I call myself bilingual because I was brought up in an aspie household but I watched my mother change from the gregarious socialite to someone who withdrew from social occasions but of course I would listen in avidly when she would complain about her new husband to her grandmother and I was fascinated about the stories that she would say, the lack of empathy, the lack of social life and all the things that had made him so pedantic and difficult to live with so I learnt about it very early on and could understand the challenges from both sides. 

Richard Fidler:  How was he with you? 

Tony Attwood: Hmm, that’s a very good point, my mother, it was late actually only a few years ago when my mother said ‘Anthony, Anthony, I have just read an article in the Sunday Times about Asperger’s,’ She said ‘ Bernard, he’s Asperger’s’ and I said ‘Yes, Mother don’t you actually read my books’ and then I said to my mother ‘Mother, I’ve known him for over 50 years and I can’t think of a compliment he has ever given me’ and my mother contemplated for about 20 seconds and she said ‘No, he’s never given you a compliment’ and the view is, if you know you are good, why should I give you a compliment?

Richard Fidler: Stating the obvious

Tony Attwood: Yes. If you got an A for that essay, well that’s it, I don’t need to say any more

Richard Fidler: How did your mother cope with having her wings clipped socially?

Tony Attwood:  She managed to create a social life with her friends, that she would have sort of dinner parties when she could be her true self and this is what I’ll do in counselling. I say ok, who were you before you met your aspie partner, go back to that person, you enjoyed socialising with the girls, you let your hair down you’d be silly and frivolous. Do it again

Richard Fidler: What did it mean having an aspie stepdad for you, for your social life, as a kid

Tony Attwood:  (Laughs) I had to brief friends when they would come to the house. And they gave me a lot of support but I found that I wasn’t really understood or welcome. So I would go to other families where I wold see different types of environments and as my mother said as I would walk out of the door, ‘Anthony don’t wear your welcome out’ and I made sure I didn’t wear my welcome out. And it was seeing other families and also my grandparents to see and feel a different atmosphere not the tension, not the criticism, not the indifference. And that’s what I did. Friendship was my psychotherapy, it was wonderful.

Richard Fidler: You said tension at home as oppose to indifference they are two different things, what were the sources of that tension what were the kind of things that would upset your stepfather

Tony Attwood:  One of the problems with Asperger’s can be emotion regulation and expression as my mother would say ‘Anthony don’t upset him, we will all suffer’ so it’s a bit like a minefield in a way in the home environment that if things are done slightly out of sequence or the sauce bottle is in the wrong place or there is a slight delay of having to wait for something, the person can explode. Not in a way that people fear for their own safety, it’s just fear for the explosion and this is when I talk to the children of a relationship where one partner has Asperger’s they say ‘Yes, I’ve been there I’ve known I have had to hold what I was going to say because everyone’s going to suffer but I can’t retaliate’. 

Richard Fidler: That must have been very distressing for you as a kid, sudden explosions of rage because the sauce bottle is in the wrong place. Could your mum intervene on your behalf in such moments?

Tony Attwood:  She had to make a decision of loyalty to her husband or her son and she chose her husband and recently she has been deeply apologetic about that.

Richard Fidler: So she has said that then?

Tony Attwood: Yes she said ‘Anthony, you have every reason to have gone off the rails, it’s amazing you didn’t’

Richard Fidler: You have done alright, haven’t you?

Tony Attwood: I think so yes

Richard Fidler: What sense of it could you make at the time, as a boy?

Tony Attwood: As a child with your parents in that sort of state you tend to blame yourself, there’s something wrong with me and that is where friends could then act as a counterbalance and say ‘no no, there is nothing wrong with you etc’ so I needed other people to confirm who I was

Richard Fidler:  Did you, did your mother have to withdraw affection from you in order to be that person?

Tony Attwood: yeah, the first time our mother kissed me I was nearly dead at the age of 26 in a hospital ward. And that was the first time she kissed me

Richard Fidler: Do you see that your mother suffered at the time from this?

Tony Attwood: Yes, I think so. She very much suffered yes

Richard Fidler: Did he change? Was he able to change over time as he got older?

Tony Attwood: That’s again a very interesting question. He could have taught Scrooge a few tricks. He was very controlling with money and my mother very beautiful, could have been a model had to make her own clothes. But as he got older he became more mellow and there was a lovely occasion where he would always get the cheapest possible most functional car and my mother said ‘I want a BMW’ and he said ‘OK, you can have one’  (Laughter from Richard Fidler) and she was in her seventies, so better late than never.

Richard Fidler: Indeed. Was he ever diagnosed?

Tony Attwood: No, no he was of a generation where it was just viewed as male

Richard Fidler: I know someone who was diagnosed in his seventies and it was almost like a sigh of relief and he was pleased with the diagnosis

Tony Attwood: yeah

Richard Fidler: He went ‘oh I have Asperger’s syndrome, this explains why I am the way I am and it led to, this kind of, there’s a kind of forgiveness in the diagnosis maybe

Tony Attwood: For the person themselves but also their family because one of the things of the affection for the partner is also going to be the children and their view can be Dad doesn’t love me, he loves the dog more than me and they can feel how do I get my father (if it’s an aspie father) to show love and affection, what have I got to do. So the children either become high achievers and they are desperate to resolve the problem and they choose to marry someone similar to the father to resolve those problems or they say ‘right, I am never going to marry anyone like that’ so there is a polarisation.

Richard Fidler: We were speaking there of couples going to parties like this.  I have seen the situation where it is him and her and he has now learnt over time to be pretty quiet at parties, just to keep himself to himself mostly and that actually acts as a platform for her because she is very charming and delightful and funny and he likes that too, he likes to see that in her. So that works quite well.  Do you often, do you sometimes see it work quite well this partnership, there is a kind of an interdependence if you like, socially that works actually not disastrously but just the other way round?

Tony Attwood: yes it does and that is what we would encourage but ok, for the person with Asperger’s how can you cope in a social situation of being there but not being there? And it can be done

Richard Fidler: Do you ever feel like stepping in when you see this behaviour at a party yourself as one of the world’s leading experts to say well I can see what’s going on here it’s fine for you to say this and …

Tony Attwood: Well this is when I am cornered by someone who wants to talk about the latest technology sometimes I will deliberately stay there to think how long before they look at my face, they are not reading the boredom signals, how long can I keep this going, as a game really. Or I learn strategies oh this is absolutely fascinating, really, I have learnt a great deal but I need to move on.

Richard Fidler:  (Laughter) I am just thinking, it’s a bit like you know when someone is at a party and they accidentally cuts their finger off in the kitchen while preparing dinner for everyone and someone goes ‘it’s alright I’m a doctor, I’ll step in’ you don’t ever feel like going it’s ok, I am a clinical psychologist I will step in and save this social situation

Tony Attwood: I may do actually, it may be to the wife and go up and say I understand, it’s not your fault (laughter from both)

Richard Fidler: Does it simply work sometimes to actually, if the person is understood to be aspie to say ‘Thank you, you’ve said quite enough we need to talk about something else and I need to talk about, I need to move on now’?

Tony Attwood: Oh very much so. Talking to people with Asperger’s they’ll say please be honest, upfront, if you are subtle I won’t read it. And so this is when I’m working with couples, I will say to the wife, say I need a hug please, a number four hug. You grade hugs according to the intensity (laughter from Richard Fidler)

Richard Fidler:  In social situations if you find yourself cornered by that person who is telling you everything about their special subject doing the deep download I think is the phrase the total download of everything they know, that person with Asperger’s is not likely to be offended if you go ‘please, I’d like you to stop talking about that now, they won’t get hurt’

Tony Attwood: Yes, as long as you are direct and not critical. Just say that was fascinating but I need to go, I’ll see you tomorrow’ or whatever

Richard Fidler: Parenting, what kind of problems does parenting raise for couples like this, the kind of couples we are talking about here?

Tony Attwood: Major problems because you have often with an aspie and a neurotypical, two very different styles of parenting.  The aspie style is with the child wanting to educate rather than play with the child.  Maybe involved with discipline and consequences rather than explaining and this is going to affect all the children but especially the aspie child should they have one and I say the parent with Asperger’s and the child they are like magnets, they either attract or repel. They may attract in terms of the aspie parent says as Leanne Holiday Willie’s father who’s an aeronautical engineer says look ‘you need to learn about reading faces, we are going on a field study to an airport to read facial expressions’, and if you want facial expressions the best place is an airport and he said ‘I had to learn it, you need to learn it’ and that was a wonderful sense of rapport. Or the wife says ‘you are from the same planet you should understand each other’ but they may not

Richard Fidler: How about that need for affection that a child has too, that they may not get that affection that they feel they need and they feel, I think you say you blame yourself as a kid sometimes, how do you negotiate, what advice do you have on that?

Tony Attwood: An illustration is an 8 year old girl and I said ‘ with your aspie dad, if you had a wish what would that be?’ and she said ‘I wish he would give me a hug when I go to bed’ and then I explored it a little bit further and what was happening was she was standing in the doorway saying ‘Good night, Daddy, good night, good night’ and he was on his computer and he said ‘Good night, See you in the morning’ ‘Good night Daddy’, ‘It’s alright just just go to bed’ but he wasn’t reading the signals that she wanted a hug and when I spoke to his wife I said look ‘can you please ensure that he gives her a hug?’ because he didn’t see the signals so he didn’t respond. She was a little girl of 8, she didn’t know quite what to say but it then transformed her life when he now gives her a hug.

Richard Fidler: You mentioned there that the aspie parent might be more interested in the educative side of parenting but how do they go as teachers by and large?

Tony Attwood:  They are often attracted to teaching not only at high school and primary school but also at university they are sheltered workshops for the socially challenged.  Where it’s a cathedral for the worship of knowledge, where you are actually paid for your special interest so they often never leave university

Richard Fidler:  Yes but having the patience and empathy to pass on that knowledge to a student or a child if you like?

Tony Attwood: Often if people are interested in their topic, they can be incredibly patient and supportive and so often they are very good as a lecturer because they have enthusiasm for their topic and encyclopaedic knowledge, you see if you are a lecturer you are paid to be boring and give monologues and it’s great

Richard Fidler: Nonetheless you mentioned there with your own father the need to tiptoe around the house a bit, is this common for children who have parents with Asperger’s

Tony Attwood: It is, it is eventually understanding what topics not to go into and also not to expect the compassion or interest in your social and emotional life. Practically changing the tyre of your bicycle fine, really good at that, but upset because a friendship has ended, well get over it, find another friend.

Richard Fidler: Is it mostly Dad’s we are talking about here? Do mums with Asperger’s, have similar problems? 

Tony Attwood:  Oh yes, this is another issue because women have a certain expectation and women with Asperger’s can be superb mums, they often lack confidence though.

Richard Fidler: Why?

Tony Attwood: Er, because normally you use intuition to read people you are not sure if you are doing the right thing so often they need confirmation that they are doing the right thing. Can be remarkable guardians and supporters of the children, never wanting them to experience in school life what they experienced of bullying and teasing, very vehemently supporting them, but again it maybe the cold touch of affection, rather than the genuine one and so that is more expected from a mum and we often find that an aspie mum marries an extreme neurotypical dad and so it is Dad who gives the affection, so when a child is upset and falls over who do they run to? They may run to Dad not mum.

Richard Fidler: I’m not sure there is always a compensating strength for every so called weakness in this case but I am just wondering when it comes to intuition, people who operate on intuition and gut feeling are so often bone headedly wrong about stuff (laughter from TA) so if you are not operating on that maybe you are more open minded and you are more ready to change

Tony Attwood: You said a very important word. Change. Unfortunately in Asperger’s there can be a resistance to change. What I am looking for is motivation and guidance because if I have a couple and they are wanting to improve their relationship it someone’s got to change and that can be a problem.

Richard Fidler: You mentioned earlier that the apple doesn’t fall far from the tree if the parents, if one parent is an aspie and they have an aspie kid and then other neurotypical kids, that’s got to be complicated

Tony Attwood: It is, one of the characteristics of Asperger’s is having a favourite child who can do no wrong and the others feel very jealous that this one has a lot of attention and so on erm it has major problems in the dynamics and

Richard Fidler: So the aspie parent will favour the aspie child is that what you are saying?

Tony Attwood: Aspie or another one

Richard Fidler: or another one

Tony Attwood: And in Asperger’s two’s company, three’s a crowd. And actually can be very good in terms of before children (BC) but as soon as children arrive well there is too many, I have got to retreat to my shed

Richard Fidler: (Laughing) Well having a favourite child, that’s complicated. So does all the effort in making the marriage work then typically fall on the non aspie partner

Tony Attwood: A disproportionate amount does

Richard Fidler: And that’s exhausting

Tony Attwood: Oh absolutely exhausting and depressing. Er, so quite often there is a sort of a degree of burnout so there might not be the appreciation of the sort of sacrifices that have occurred, there is the expectation that you will do it. My mum did everything for me, you must do everything for me as my wife.

Richard Fidler: And is this a common thread you find when counselling couples in such situations

Tony Attwood: Yes

Richard Fidler: Is Asperger’s considered a kind of disability and ought it to be so or ought it not to be

Tony Attwood: In certain extreme forms it is because it affects the quality of life and the ability to get and keep jobs, we are talking about here in societies terms a difference so you have got somebody who is a successful accountant for example, or a medical neurosurgeon. They are married, they have three kids, good income and everything is great but they don’t see the challenges behind closed doors so it is not a disability it is a difference. 

Richard Fidler: You run these relationship courses with couples, is it just you and the couple or do you do these courses with several couples all sitting in the same room at the same time.

Tony Attwood: It’s both but what we find when we have what we call our relationship mindfield groups

Richard Fidler: Relationship mindfield groups? (Laughter)

Tony Attwood: Yes that is what we call them, we find that sometimes the best advice comes from other couples, so you get people who are in the early stages of the relationship then talking to those who have been married for 30 to 40 years what do you recommend and they say ‘look’ etc ‘get a social life’ all those sorts of things and they take it very seriously

Richard Fidler: (Laughs) Is this, given that you have got the two cultures there in several couples in the same room do they then tend to split off into their own cultures like the Asperger’s man will say something and the other guy will go ‘absolutely right’

Tony Attwood: Oh yes for sure. We sometimes split the groups and I usually go with the aspie men and one of the things I say is ‘What would you like your NT wife to know about you?’ ‘I keep telling her this and when I’m at work I don’t think about her, she expects me to send text messages and things like that but when I am at work I am at work and that’s where I stay’ and then in the other room my friend and colleague Michelle, she is talking to the neurotypical ‘why doesn’t he give me a hug when I need consoling and compassion he just doesn’t see it and walks straight past me and says where’s the screwdriver?’ so it’s really trying to work out that they support each other in terms of shared issues but then what do we do about it?

Richard Fidler:  It’s just like those arguments that used to break out in Star Trek between Mr. Spock and bones the doctor ‘Good God man, have you no feeling?’ ‘That’s highly illogical sir’ that kind of thing

Tony Attwood: (Laughter) Well yes, there was another one when Bones says ‘Thank God, we got out of that’ and he said ‘but there was no (inaudible) involved’ 

Richard Fidler: (Laughter) When you are doing such counselling how crucial is the acceptance of the diagnosis of and do people fight against that diagnosis

Tony Attwood: Yeah, you can’t get anywhere until there is acceptance. Now you don’t need a formal diagnosis just a recognition that you have those characteristics, that they define who you are and then you need to move on from that, so you don’t need a formal diagnosis

Richard Fidler: To reach that man, particularly the man with Asperger’s do you then have to explain to them the logic of the need for change. 

Tony Attwood: Yes if you don’t change you are going to lose your housekeeper

Richard Fidler: (Laughter) Presumably you don’t say that when she’s in the room

Tony Attwood: No I do, and she says ‘yes you will’. (Laughter from Richard Fidler) Or she’ll say ‘Look, you’ve got to get a diagnosis because if you haven’t got Asperger’s, you’re a mean bastard and I’ll leave you’

Richard Fidler: So what sort of help do couples mostly need then

Tony Attwood: It’s communication, it’s understanding the two different ways of thinking and culture. They are not a value system, one’s superior to the other but they are different and one of the characteristics of Asperger’s is problems with communication so it is improving communication and understanding. It’s not rocket science, we know what to do

Richard Fidler:  When a diagnosis comes many years into a relationship how is that realisation met? Is it met with the kind of happy ‘oh my God that explains so much’

Tony Attwood: Well again, a good question. Sometimes the neurotypical will say ‘I always thought that he was like that because he chooses not to do it, that he won’t do it, now I know that he can’t do it’ and that takes the wind out of your sails because there is a view that, I can find the key he did it in courtship, he can do it again, if I can just find that magic to get him to do that and then realise ‘no that is the fake part what I see now is the real part’

Richard Fidler: So at least you can create some space for the diagnosis for compassion and insight

Tony Attwood: Yes but it is going to take time to get that and the person with Asperger’s says ‘oh great’ and I say ‘But that is not an excuse, you can’t say no no, we are not going to go socialising because I have got Asperger’s’ (Lots of laughing from Richard Fidler) No, your wife needs to go and you must go.  We also, we fight aspie with aspie. We say, right you will give your wife two compliments a day and you will write it in the diary and next week we will see the two compliments that you gave your wife.

Richard Fidler: So is it quite touching then when the man with Asperger’s says it is time for our scheduled compliments ‘you look particularly lovely today’ something like that or ‘… you did something very nice today’ or ‘something very well today’ something like that. (laughs) Do you give them signs to use? 

Tony Attwood: Yes, I think it has to be, you have to be able to see it rather than read it in the facial expression etc and you have to be able to say ‘I want’ or ‘I need’ otherwise you won’t get it

Richard Fidler: And in social situations do you give the partner the signal to the aspie person, like a hand signal or something that they can use across the table

Tony Attwood: Yes, it’s like traffic lights, it’s like red light stop or that’s enough. So often the NT will come to the rescue of the boring conversation and just say to the husband, just come along with me into the kitchen for a moment, to rescue the person who is stuck in the corner.

Richard Fidler: Is there any kind of semaphore you can give them, like hand signals or something like that

Tony Attwood: My mother (sound of hands clapping) yes exactly that’s what’s needed ‘oh oh oh sorry, I …’ etc and then interrupted and they’re ok 

Richard Fidler:  How many of these partnerships work out in the long term?

Tony Attwood: Surprisingly many, actually. The divorce rate is quite low and for both partners they are very keen on maintaining the relationship, so divorce will occur yes but not as much as I would have thought.

Richard Fidler: As always Tony this has been completely fascinating talking to you and hugely enjoyable as well and fascinating to sort of to get this insight into these two different cultures and what happens when they interact, it’s just amazing, it has been such a pleasure. Thank you so much Tony

Tony Attwood: Thank you Richard

Feedback requested for a NHS report please

A friend of mine, Andrew Carpenter (@NBNLondonRegion) is writing a report for the NHS and wanted feedback on his summary of the cultural context in the autism world at the moment. Please can people comment or tweet with their feedback…

It could be said that we are in place of ‘the more we learn, we less we know’. There is very little research into autism in adults, leading the authors of The Autism Dividend to conclude that

…most policy and practice is not supported by evaluation of effectiveness and cost-effectiveness in studies of good quality. This is hardly surprising in view of the very small sums of money spent on autism research (only £4m per year in the UK) compared with other societal issues of comparable size and importance.

At the same time, the autistic voice (often coming together under a hashtag movement known as #ActuallyAutistic) is finally beginning to be heard. What was seen as best practice only a decade ago is now being challenged, or sometimes shown to be actively harmful (see later in this report) and it is perhaps no surprise that the more the #ActuallyAutistic voice is heard, the more we are beginning to understand and change. Sometimes, though, this has led to conflict between autistic people themselves, and the families and professionals who seek to support them.

With the dearth of research, it seems vital that the autistic voice is not only heard, but accepted as the very best way of gathering useful information about what is required, desired, and works best, whilst also recognising that the autistic population is as varied and different as the predominant neurotypical (PNT) population. It also seems vital that autistic people are not just included in, but acknowledged as often able to lead on, discussion and research. The community’s frustration at being excluded or having only tokenistic representation must, I think, be acknowledged openly.

Part of this change is to argue for more acceptance of autism (not just awareness) as a difference and definitely not something to be cured. Indeed, the very idea of this is quite offensive to many autistic people, in the same way that the thought of ‘curing’ homosexuality would quite rightly be held up as something abhorrent.

Whilst I do not wish to dwell too long on this, I think it is important to understand the wider context and for clinicians and commissioners to understand that direct involvement is key in a world that lacks concrete evidence from research. Is autism something to be diagnosed or simply identified?

And on a personal note, I would like to thank the commissioners of this report for insisting that it was carried out by an autistic person.

The post about the recent ruling on excluding autistic children from school

The recent ruling on excluding autistic children from school Click To Tweet

National Autistic Society article about a recent landmark ruling

Autistic children are more likely to be excluded from school than non autistic children. A loophole in the equality act meant schools were excluding children if they had ‘a tendency to physical abuse’ even if that behaviour is because of a lack of appropriate support.  Thanks to a recent ruling a child cannot now be excluded for behaviour ‘linked to their autism’ if the right support hasn’t been put in place.

This is fantastic news as it sends a strong message that we should be supporting children not blaming them.

However, I have comments:

Violence is not linked to autism.

Violence is more likely when somebody is distressed, scared, trying to escape an intolerable situation, in meltdown or sensory overload. Non-autistic people may also be violent in that situation.

We see this with autistic children more often as we insist on putting them in unsuitable school environments! It is vital that this is understood. Blaming autism rather than the environment lets a lot of people off the hook. Blaming autism means the behaviour cannot be changed as the person will never stop being autistic. Autism is NOT the reason  – find the real reason for the violence and fix that.

Understanding and attitude are as important as a legal obligation

Most parents do not want their children in a school that wants to exclude them.  We need major changes to attitudes and autism understanding in mainstream schools. This ruling sends a message which I welcome but a legal obligation to include is not enough.  Children need to feel wanted.

This ruling is a good step forward for autistic children but it is clear from the articles and the response on twitter that there is still much work to be done to ensure autistic children are safe and happy in education.

About tone policing autistic speakers

Tone policing autistic speakers Click To Tweet

I recently heard a talk by an autistic speaker. This speaker has had awful experiences with professionals throughout their life. They have said that professionals nearly killed them.

Sometimes when autistic people speak about their life experiences, anger and resentment is obvious. This can make others feel uncomfortable. An autism professional complained to nearby autistic people that the speaker should not be so negative about professionals. The fact they are on stage ‘validates’ their views and many of the audience members were good professionals who had come to the talk in their free time.

Hearing this bothered me a lot because:

1. The speakers views ARE valid – they are a result of their life experiences

2. Few of the autistic people nearby even had a job to take time off from

3. If the speaker was angry about past life experiences they had every right to express that. We NEED autistic people to do so publicly.

4. Why must a speaker convey their whole history in a talk? Just accept the anger is justified.

5. There was no awareness that they had just made me and others feel silenced, sad, angry.

I did not say much in response. I mumbled something supportive of the speaker then decided to vent online later.

It is true the audience was likely to be biased towards professionals who ‘get it’ as they had chosen to learn from autistic speakers but in my view that does not mean autistic people should not express their emotions.

We learn over a lifetime to hide our emotions, to comply, to blend in. When we do get the opportunity to be heard please let us speak freely.

Better Decisions

What is the first thing one does when discovering one and many of one’s family is autistic? Well, most people would do some research. Unfortunately this is fraught with danger when it comes to autism. There are so many fallacies and misconceptions all over the internet that it would be difficult to come away from that research not feeling like you are all doomed, your children will be forever unemployed and they need training to be ‘normal’ for them to have any hope. After reading a few dire books and many blog posts (I was yet to discover all the fantastic blogs written by autistic people), I hit the jackpot and accidentally came across the Autism MA at Sheffield Hallam. I sat in my first teaching session within a couple of weeks of enquiring as a new year was just about to start. It all happened very quickly and I had no clue at the time how much I would benefit from the course. It turned out to be a refreshing change from all the negativity and blame to which autistic people and their carers are usually exposed.

Some of the most important concepts I have been taught are: critical thinking – the first module is all about critiquing the theories of autism, many of which were new to me; and the social model of disability – this was a revelation and it enabled me to see that my difficulties are not my fault. I have to cope with poorly designed environments and the best way to help myself is to change my environment; and research skills as I am currently doing my first mini research project.

Since I started this MA and we got our diagnoses, my family has had to make many big life changes. I think we have made better decisions than we would have if I hadn’t learned to reject the medical model. We will all reap the benefits in the long term. It has been very useful having a supportive network of people around me. I have made many contacts and friends via the masters and online, including other autistic people and people with lots of experience in schools (very useful when your children are autistic).

See Me At…

First of its kind Autism Awareness Fun Fair and Gala Nite

Pamber Heath Memorial Hall, Pamber Heath, RG26 3TQ

20th October

This day is going to be an educational and inspirational one bringing together families, educators and people from all walks of life and all Abilities to raise autism awareness and to discover the talents, abilities, and capabilities in autism.


Three presenters have been booked for the day

Alex Kelly will present on Autism and Communication

Shona Davison will talk about being autistic and parenting autistic children

 Eric Moor, on the general overview on Autism

Kids’ presentation of “Disability Lies in the eyes of the beholder”, poem

Children will have lots to do on the day to showcase their talents and abilities.

You can’t afford to miss this special, first of its kind, Autism AWARENESS fun fair and Gala

Book on Eventbrite

The Autism Show

EventCity, Manchester

30th June 

I’ll be speaking about Autism and ‘Challenging Behaviour’: Who is Challenging Who?

There are some great other autistic speakers too. You can find us in The Hub: Theatre 1.

Book Ticket