Other People's Words

Transcript: Donna Williams's interview with Tony Attwood

Posted in Uncategorized by Tera on July 20, 2009

Some people have been asking for a transcript of Donna Williams’s podcast interview with Tony Attwood. It’s not perfect, so feel free to correct me on words I missed/misunderstood, etc:

ETA: Errant Penny has also posted a transcript:

Part 1
Part 2

Donna Williams: Welcome to Oddpodd. I’m Donna Williams. And who we have today is Mr. Tony Attwood, over in America. So we have a link up between Tony in America and me here in Australia. Hello, Tony.

Tony Attwood: Oh, hi, Donna. Yes, although of course I don’t live in America, I’m only here just for a few weeks.

Donna Williams: Uh-huh, where are you? Other than in a room with green and white curtains where are you? [Laughter]

Tony Attwood: I’m in Baltimore.

Donna Williams: Baltimore, ok. And the reason that we’re having this interview is at the moment you seem to be everywere you’re all over the Internet.

Tony Attwood: Yes. But not necessarily related to happy things.

Donna Williams: I know, I know. And I think I, um, one of the things that interested me i suppose about the interview is that there is quite a climate of this celeb-bashing thing and I’ve had my little run-in with it.

Tony Attwood: I don’t think it was little; I think you had a lot of [unknown] but that was years ago.

Donna Williams: Oh, no. I think my last little episode was only about 3 months ago. I’ve been haunted fairly regularly on and off. I think I just stood the test of time fairly well. [laughter, both D and T] . So I want to talk a bit about the autism forums and how things used to be and how they’ve got to where they are. so i want to put this in a a bit of a sociology-history kind of context. So the current autism forums have begun to get…not begun but they’ve been getting more millitant, more confrontational. But I don’t know if you know, but back in 1997 before most people were on the internet there was only one autism penpal list through which adults who were diagnosed with autism could find others. and this was run by a place called MAAP and it was basically a non-autistic parents group that helped link up adults with each other and through this i found Kathy Lissner [-Grant], the first ever other autistic woman that i could meet. so i flew to america, yeah, to meet Kathy. It was like “My God! i’ll meet another autistic woman in the whole world!” And Jim Sinclair drove from Kansas to St. Louis to join us. and in Kathy’s living room–

Tony Attwood:Ah, yes, I’ve met him, yes.

Donna Williams: In Kathy’s living room we started ANI, because we said, “You know, we need to have a group. We need to have a way that we can all find each other, and Jim said, “Well, I have this idea, ANI–for Autism Network International. i said great, well you can be the newsletter person and Kathy’ll be the welcoming committee and I’ll be the PR kind of woman who uses my books to draw people to know about ANI.

Tony Attwood: Brilliant [?]

Donna Williams: We had a snail-mail thing that went global it had a pen-pal list and it was friendly and it was inclusive, it was diplomatic, we weren’t militant, we weren’t confrontational, we were just glad–if our enemies were..there weren’t any enemies. [Laughter ]

Tony Attwood: Okay.

Donna Williams: If we knew of any, we wanted them to talk to us, and we wanted to talk to them [laughter] because we wanted to change things and that was our mentality. Another time, Jim had the concept of NT or the neurotypical thing, and he’d written this little piece of satire. And it really was witty and it wasn’t hateful and it was a DSM for neurotypicality. And of course years later we had the internet and this explosion of forums, and all that i guess history got lost of how the whole movement began. And it’s got more and more militant, more confrontational, more demanding. “Thou shalt not this,” “thou shalt not that,” you know. [laughter] So, my question is, what was your involvement with autism back around the late 1990s, and how do you feel that’s changed?

Tony Attwood: Oh, what an interesting question. Around the end of the 1990s, it was sort of a wonderful mutual discovery for everyone.

Donna Williams: Absolutely.

Tony Attwood: And there was that degree of optimism, and sheer delight in finding out the commonalities and, oh yes i’ve done this, oh i can relate to that, too. But i think subsequently, it has been used for various personal agendas that can be quite vitriolic, and detrimental in a number of ways. So that degree of positive optimism, I think, is going sometimes.

Donna Williams: What was interesting about what you just said, the personal agenda thing, is that we were all very different from the moment we met, what we [?] was not just our shared things, and there were things that me and Kathy shared in common, things that me and Jim shared in common, and things that were very different between each of us. [laughter] But we were excited about the differences as well–that there was this one shared word, but there was so much difference, and our personalities were so strikingly different, too. And our cultures: we didn’t think of the autism just as our culture, we also looked at who we were as people. The countries we had come from, the social backgrounds we had come from, so there was a tendency at that time, before we met a vast number of others, to think of ourselves as a person of which the autism was a part, but not the whole. Do you think that’s changed? [laughter]

Tony Attwood: No, I think it’s still there. There are still individuals. Each person is unique. They all have experiences. There are common issues such as bullying and teasing and so on, but I think usually my thoughts on autism and Asperger’s Syndrome is that the problems often come from other people, rather than, necessarily autism itself. The way I describe it is…journalist who I’ve not talked to will say “those who suffer from autism and Asperger’s” and I say, “Autism and Asperger’s doesn’t give you suffering like stomach cramps or pain in the joints, but you can suffer, but usually because of the attitude of other people.

Donna Williams: Mm. Now, I kind of differ on that, and that’s where I’ve had a lot of struggles with the autism community, because I was meaning-deaf, about 90% meaning-deaf until I was in late childhood. And it’s very hard when you have no shared language, and you’re treated like a crazy, and you think perhaps maybe you are and you’re a bit more feral because there’s no shared things. It’s very frustrating when you come out with speech that others can’t make sense of, and that side I do feel is like being a deaf person who never got taught to sign. So there’s a degree of suffering in that isolation, which isn’t necessarily just about the ignorance of other people. It was a significant sensory challenge.

And then there’s things like faceblindness. I’m still about 70% faceblind, but I was so faceblind I didn’t know the mirror reflection was me, so everbody was a stranger or a friend, depending on the day. It was very hard to trust anyone. I’d constantly walk up to people who have no idea who I am or [laughter] they confuse me all the time, so that again creates a great deal of isolation, which is just part of the condition that you have. And when you look at things like alexithymia, which is apparently common to 85% of people on the spectrum.

On the one hand, you can say, “We don’t suffer from this, just what we are, it’s what we have.” On the other hand, if it’s severe and you can’t tell if you’re overheating, or are you hungry, are you annoyed, do you need to pee, that’s very frustrating, and that’s not necessarily caused by other people. And then of course you can add co-morbids, which, if someone’s had those since they’re like 8 months or 2 years old, and it’s never been treated, these are often the conditions that adults who suddenly acquire these conditions kill themselves because they can’t cope. So if you inherited those and they’re diagnosed as part of your autism, again it’s not necessarily something other people or bullying or any other kind of environmental thing cause. So whilst there’s a whole section of the population whose main degree of suffering is caused by the ignorance and discrimination of others, there’s definiately aspects–gut, immune, metabolic thing–where people really can suffer from aspects of their autism fruit salad without demonizing autism. Does that make sense?

Tony Attwood: Yes, it does. And it means that it is extraordinarily complex.

Donna Williams: Absolutely. And also, it says something about how can we all speak with one voice, when we’re so individual, and our fruit salads are individual? And our sociology is individual and our personalities are individual?

Tony Attwood: I think that’s very true. Yes.

Donna Williams: On diplomacy, on this controversy thing which we’ll get to soon. You’ve been put in a position where you’ve been told who you can relate to, who you can’t relate to, who you have to dissociate from and the public apology you must make, etc., etc. Now, if we decide that we can’t speak to those who disagree with us, or we can’t speak to those who perhaps have a narrow view or a view that’s yet to evolve, is that your politics? Where are you on diplomacy versus this whole confrontational thing?

Tony Attwood: My own approach is to be constructive, to look at sort of evolving and developing mutual understanding, and if there are areas that some people are offended by or upset by, then try and work on those things, to alleviate the confusion that may exist. What I think is occurring or could occur is almost like a civil war that’s going on, where you’re either for us or against us.

Donna Williams: Oh, totally. And I’ve been put in that position, yeah. And, I tried to say, “No, I’m a moderate,” and then I was told, [laughter] basically that that means I’m a weak person who has no views. And I said, “No, I’m not a weak person who has no views.” I can see both sides, and that doesn’t make me a weak, wavering person. And I still feel there’s a lot of people can’t grasp that.

Tony Attwood: Yes, I agree with you. I suppose it’s that sort of approach of trying to be constructive rather than destructive.

Donna Williams: And if you’re associated with groups that are considered by the political wing of autism or the political forums as hate groups, does that necessarily mean you’re hanging with your buddies? [laughter from D and T]

Tony Attwood: I’m very much an individual, and I do what I choose to do. So my allegiance is to my own knowledge and beliefs, rather than I’m associated with any particular club.

Donna Williams: [laughter] Oh, yay! Oh, I can relate, because…now, that’s so interesting because I’m very into personality traits and some of my strongest ones other than being very solitary, I’m very much that vigilant and that idiosyncratic trait. I’m also obviously a wild, mad artist. But that idiosyncratic one is the raving, non-conformist [laughter] who won’t join any group, like the Groucho Marx thing, you know, “I wouldn’t join any group that would have me as a member.” And the other side is that vigilant side, which is, I’m a lone wolf, you know. [laughter] So, it’s very hard for me to understand the pack mentality, and the constant invitations to join the pack, and that this is meant to be part of my autistic culture, this desire to join the pack. [laughter] I can’t understand it, because I’m just not a “pack person.”

Tony Attwood: No, I think there’s a lovely phrase by Sting, [who I’m-?] very keen on his music and so on, that men go crazy in congregation; they can only get better one by one.

Donna Williams: Um-hm, um-hm.

Tony Attwood: And I think this is a mutual support amongst those various people to risk-take and go to extremes, which can be detrimental to the actual message that they’re going to get across.

Donna Williams:Yeah. Yeah, and if you, maybe if you hang with the pack, it’s hard to find your own individuality, or to give yourself permission for it. Like, if the whole politic is, “If we don’t speak with one voice, we will be weak,” where’s that opportunity to be an individual?

Tony Attwood: Yes, but also to see the sort of a broader side, it’s an [inverse?] of a black-and white, there are at least two sides to an argument.

Donna Williams: [laughter] And if you’re a sociologist, everybody has a side. Maybe that’s like one of my other things, is that I’m a sociologist, so there is no black and white.

Tony Attwood: Yes, but also, there’s this urge to b e correct and to prove that you’re correct, and in some ways there isn’t a correct answer. There’s a thoughtful one, an [on-balance?] of a particular viewpoint, but not the “correct” and “obviously wrong” answer.

Donna Williams: I really doubt that anything…I can’t say that I’d ever be correct. I only can say what I feel and experience at a particular point. But if I take myself 10 years ahead from now, I’m not gonna be the same person making the same views. So I’m always myself in the becoming-of it, and so where is this idea of like, the one correct thing? What we thought was correct 10 years ago we’re throwing out now. And we may well be…we’re the fools of tomorrow [laughter] and we think we’re really clever now.

Tony Attwood:But also I take your point up earlier that organizaions that were started a number of years ago, certain key people can change within that organization–

Donna Williams: Absolutely.

Tony Attwood:–which changes the direction–

Donna Williams:Mm, yeah.

Tony Attwood:So somebody like me, [could?] be associated with that historically, but may not necessarily agree with the direction that that organization has gone in.

Donna Williams: That’s what happened with ANI, I think was, I do think that–I have great respect for Jim, and I think he has been a really good diplomat, he’s certainly, um…I’ve remained the sociologist, I’ve remained that person who sees kind of relativism [laughter] everywhere. And, and Jim became a lot more militant. And Kathy stayed quite–she’s still remained the sociologist and the social welcoming committee, so she didn’t change that much. But all three of us went in quite different directions.

Tony Attwood: [Laughter] And that’s what often happens, yeah.

Donna Williams: Now, I want to talk about this whole thing of mourning. Now, Jim wrote an article back when I met him in the 90s called “Don’t Mourn for Us,” and this is a very well-known article about mourning that you’ve got an autistic child, and obviously that’s really distasteful in the autistic pride movement, the idea that you’re going to mourn that your child’s autistic.

Now, I want to talk a bit about that, because I feel that both of my parents had aspects of an autism spectrum fruit salad. Certainly, there’s others on my father’s side who are diagnosed on the spectrum and a range of other conditions that are commonly found on the spectrum. And I feel that they both really struggled to be healthy parents and partners to each other, and that family did break down. But equally, I feel that they were two of the most remarkably innovative people on the spectrum. There were things these people tried in a time where autism was not understood, that were cost-free and crazy and worked, and I am just so…you know, I’m really impressed by that. And I’ve also worked with hundreds of families who had relatively good relationships and care deeply about their kids. And groups like FAAS, which stands for, can you fill me in? Families–

Tony Attwood:Families of those Affected by Asperger’s Syndrome, I think.

Donna Williams: Yeah, I think they use the word “afflicted,” and, and this pisses people off.

Tony Attwood:I [unkwnown] with the word “afflicted,” I never have agreed with the word “afflicted.” My preference would be the word “affected,” not “afflicted.”

Donna Williams: Okay, so at least we know the angle that you would prefer them to be able to take on.

Tony Attwood: Yeah.

Donna Williams: As a group, they’ve been challenged with betraying those on the spectrum as bad partners and bad parents, which of course lends itself to misuse under law. What do you think of this whole concept of mourning that some non-spectrum partners or parents have? And do you think it’s possible that those who mourn having an autistic partner or mourn having an autistic child, they may have to have certain types of personality traits to have that take on it? Do you think that’s possible?

Tony Attwood:I think what happens is…is when you say “mourning,” it’s a grief for what you expected, either in a child or the relationship.

Donna Williams: Absolutely.

Tony Attwood: So that certain expectations that weren’t realized–and it’s a grief, a death of those expectations–the problem can be is how that’s used constructively and to get over it, and to look at what can be done in terms of recognizing that child’s personality, the challenges they face and how heroic they are in trying to cope. But also the qualities of that particular partner and making mutual adjustments. Now, my clinical work–working, for example, with parents and couples–is to try and bring both parties together and encourage them to be understanding and supportive of the child, and understanding what I call “two cultures.”

Donna Williams: Yeah, I agree.

Tony Attwood: And so, with a couple, I’m very concerned that anyone would make the suggestion that that those with Asperger Syndrome are by nature then unable to have good relationships with their partner or be good parents. I mean, that’s a terrible insult to those with Asperger’s because some of my friends and people that I know with Asperger’s Syndrome, I know that they are very good parents, they are exceptionally good parents, and they can be exceptionally good partners. So having Asperger’s Syndrome means that there are certain interpersonal confusing areas and difficulties, but they’re not insurmountable, and you can work on those.

Donna Williams: And how do you reconcile that attitude with being involved with a group like FAAS?

Tony Attwood: I think FAAS has changed from when I was involved many years ago, when it was more of a sort of a mutual support, an opportunity on the Internet to explain your difficulties with people who understand and to then be constructive about it. I think then there has been a change and a sense of negativity and criticism with so much emotion, and unfortunately, then, rationality and reason goes out the window with so much emotion. And sometimes partners who are neurotypical aand go through the grieving process can–as you get when couples split up–have a degree of venom and animosity that is fueled by emotion, not [unknown].

Donna Williams: So just as there are people in the autism pride movement who get too personal and too venomous, there are people in FAAS who give that group equally a bad name and stagnate the development of a broader perspective, would you agree with that?

Tony Attwood: Undoubtedly, yes, I do agree with that. I think those are two extremist views. I prefer to see myself as constructively in the middle.

Donna Williams: [Laughter] And of course, that leaves you open to the same accusation that I’ve had, which is therefore you’re weak and wavering [D and T laugh]. I think we just have to live with that–that people who see black and white don’t understand gray.

Tony Attwood: Yes, and it’s on both extremes. It’s not an exclusive preserve of those with ASD.

Donna Williams: Oh, totally.

Tony Attwood: Neurotypicals can be equally extreme in their views, but when you’ve got such strong emotions, reason does seem to disintegrate.

Donna Williams: Yeah. One thing that did strike me, though, was I have seen parents who…you know, I’ve met a lot of parents who come in and they get along well and they love each other and care a lot about each other. And I’ve had some come in who bicker and are very dissatisfied with each other, both from the autistic perspective and the non-spectrum perspective. And those, occasionally those who you’re calling NT–neurotypical–and I’m calling non-spectrum have described things like what is referred to as CADD. Can you give us the words for this?

Tony Attwood: Well, it’s not a phrase that I have used at all, and I’m not sure quite what is meant by that. I think the person who originated [that?] was Maxine Aston, and I it reflects too that the difficulties in the relationship may lead to the neurotypical and the Asperger partner feeling quite depressed because of their situation. And I think that that’s an actual phenomenon, that actually does exist. It exists in all couples, when there are communication and understanding difficulties, one or both partners can get depressed. And that’s what I see.

Donna Williams: Yeah.

Tony Attwood: It’s a problem of…A difficult relationship may make one or both partners depressed. But that’s a typical phenomenon. I don’t think it necessarily needs a specific label that is exclusive to those with ASD.

Donna Williams: My view is that for people to be extremely dissatisfied to a point of headaches and illness and whatever physical symptoms they’re having about their mourning; for them to have that because somebody as social-emotional agnosia and can’t read their facial expressions or body language; to have that because someone has alexithymia and can’t easily read what they’re emotional messages are, so can’t necessarily tell whether they’re feeling like they’re in love at this particular moment or whether that was last week; who can’t necessarily tell that that niggle isn’t that they need to pee versus that they really wanted to say something to you. I think “Well, what kind of a person would get so wound up that someone can’t meet their needs?”

And, having studied personality, I thought, “Well, if you really need a lot of attention, you need a lot of admiration, you need a sense of adventure, whatever, then you’re probably gonna be set up for being a little more dissatistfied having a…you know, maybe you need all that emotional entanglement with having a partner who has those issues. But if you had a different kind of personality and you were still non-spectrum, maybe those issues wouldn’t be there. You know, like I’m quite solitary, I’m very arty, I live in my own head. Maybe I’ve got a fairly autistic personality. But I am married to a fairly Aspie man, who has a great deal of…who virtually can’t read my facial expression (not that I give much away), and he’s as alexithymic as I am, and we don’t miss anything. I don’t have any need to have him admire me, fixate on me or get entangled with me. So there’s nothing missing, on either side. So, to a degree, if this idea of CADD exists, as specific in non-spectrum with spectrum partners, I reckon it could be a personality disorder thing that happens to some non-spectrum people in certain circumstances. Do you kind of buy that? [Laughter]

Tony Attwood: I think that it’s a natural human characteristic in relationships that we’re all potentially prone to, but it’s more likely to occur in those where there are difficulties in the sort of social-communication side of life. But what we need to do is to work on that, so that if there’s any sort of way that that person who feels that they’re not getting sufficient social-emotional experience, to get that in their life.

Donna Williams: Yeah, I agree, and I’ve said this to those parents. I say: “Number one, go get a puppy.” [Laughter] And then I’ll start talking to them about, “What’s missing in your friendships, what’s missing in any other wider networks that you have, that you are expecting all of this from one human?” Do you think that’s kind of your angle, too?

Tony Attwood: It’s putting a lot of responsibility onto one person, who then becomes confused over, “What does my partner expect me to be? She’s expecting me to be someone that I find very difficult to be and is artificial.” So, if the person wants a greater social life, etc., well, they get a social life, but [go to a?] party on your own.

Donna Williams: Yeah, what’s wrong with that? What’s wrong wtih that? That’s often taken to be some sign that you’re not loved, and I think certain personality traits would make that stronger. Some people are naturally more independent; they don’t feel that it would reflect badly on them or be some defining thing about a lack of love if they went to a party on their own, and others, their head would fall off. [Laughter]

Tony Attwood: Yeah I think that, when you phrase the topic of “love,” I would say there can be a difference between someone with ASD and a neurotypical in how to express love. Often with a person with ASD, love is expressed by practical deed–that is, tangible, you can see and benefit from. Whereas neurotypicals are expecting the hug or the cuddle or the “I love yous”, etc., which those with Asperger’s feel “Well, I can show you a better way of expressing love, which is more practical and tangible.”

Donna Williams: Yeah, like I cleaned the kitchen [laughter].

Tony Attwood: Yes. So it’s [unknown] relationship counseling, but what each partner is looking for in a relationship, and as much as we can, to make sure that their needs are satisfied by whatever flexible and creative means that we can.

Donna Williams: So, just because you’re willing to discuss this idea of CADD–the Cassandra affect thing raised by Maxine Aston–this doesn’t necessarily mean that you are a big subscriber to it as she sets it out. Is that correct?

Tony Attwood: The way I describe it is, there is a risk of difficulties in the relationship that could lead to depression. Whether you link it to the words “Cassandra” or not, I think is a litle bit dubious, but I would look at it that there may be a sense of depression in the relationship, and we need to work on that.

Donna Williams: Um-hm. Now, I want to talk about the whole public speaking thing, because when a public forum goes to town on somebody, when they’re having their little celeb-bashing football match, you know the new modern football thing [laughter], they tend to take everything from there. So one of the things that has been raised is your role as a public speaker. So I’m gonna talk a bit about that.

In the late 90s, people with autism were never paid as public speakers, and those who sought to do public speaking were even being asked to pay for their own accommodation and transport. I remember Jim Sinclair paying for his own accommodation and transport for having the privilege to speak at an autism event, yeah? Now, after a number of years, some of us were paid a token fee of about 25 to 50 dollars, because it had become trendy to include a voice of someone on the spectrum. And we were often told what to speak about. We were to speak about our holiday; we were to speak about some kind of autism circus thing, but don’t be challenging, because that was for the real experts, the real paid experts. And this was even if we had qualifications. So it’s taken a long time for even those of us on the spectrum who are qualified people, very experienced, people with publications to ask for 150 to 250 dollars as a speaker’s fee. And this is in a world where there’s a very high degree of unemployment among adults on the spectrum. Now your fee, I’ve heard it said, [laughter] is up to $4000 a lecture. Now, I’m also told that the vast part of your presentation is drawing on the writings and tales of those with autism. So you’ve been criticized for earning these vast sums through re-telling the stories of people on the spectrum. What do you think of that? [Laughter]

Tony Attwood: I’d like the idea of vast sums, and obviously I don’t do presentations every day of the year.

Donna Williams: [Laughter] Yeah, I had this one, too. Someone did this little stalker thing, like, “And she gets a thousand dollars a day as a speaker’s fee!” and I thought, “Wow! 365 days a year, that would be good!” [Laughter]

Tony Attwood: I agree. That would be really excellent, in fact. It’s a difficult one. What I do when I do my presentations is combine information from a lot of clinical experience, people I’ve met and I find that sometimes a quotation of someone with ASD really encapsulates what I’m trying to explain. It gives extraordinary credibility to it, and the words of that person will get the message across maybe better than I could in my use of words, and so I’m quite happy to illustrate what I say with quotations from people with Asperger’s Syndrome. And as much as I can, I give credit to the person concerned.

Donna Williams: Yeah. Okay so, on the one hand, you’re saying that because you’re taking time out from your professional life, and this is not a daily kind of thing that you do, that it’s not the case that you’re getting $4000 every day of your life.

Tony Attwood: No. No. I am not. And {?} is an exhausting process. So people would say yes, but there’s also the travel time that has to go into that, and all the various expenses, etc., so, um…

Donna Williams: Do you pay for your own flight?

Tony Attwood: Not usually, no. That’s usually paid for by the people who are organizing the conference.

Donna Williams: Oh, good. You’re lucky. [Laughter]

Tony Attwood: I am. I’m delighted with that.

Donna Williams: For the record, I’m $250 a lecture here in Australia. [Laughter] Should we compare notes?

Tony Attwood: I think you’re worth more than that.

Donna Williams: I know, but I say that I only charge that as an embarrassment to people like you. [Laughter]. I don’t know why I charge that. I think I’m pretty leftist and I like to think that it keeps the fees low. And I tend to avoid those conferences that are gonna charge a lot for people.

Tony Attwood: Okay. There are two types of conference organizers. There are those that are I should say businesses or entrepreneurs, that are making a profit. Then there’s the others that are parent organizations, etc. What I try to do–and unfortunately, I do seem to get a lot of people coming along–what I hope, and is very important to me, is that the organizing group make a profit. If they were making a loss, then I reduce the fee.

Donna Williams: Yeah.

Tony Attwood: So what I base it on is: There’ll be so many people there, there’ll be a certain amount of money coming in, and that, shall we say, parent organization or whatever, turns with a profit. That’s partly why I get invited back.

Donna Williams: Yeah, same for me. Same for me. So it’s important to me that I don’t take from the community, that they end up raising for their own community.

Tony Attwood: Yes. I think that’s very important to me, that there should be a profit for that organization. [For?] companies that do that, that’s a different issue, and a sort of commercial sort of conflict, but in fact, the majority of presentations that I do are for local support groups: autism groups, Asperger groups, school groups, etc. And at the end they say: “Oh, that was good, we really enjoyed it.” And there is almost certainly a profit for them. I am delighted that by me coming and giving the talk, they made money.

Donna Williams: Yeah. I want to talk about you as an entertaining public speaker. Some would say that you’re an entertainer, and you’ve been recently criticized for drawing laughs from your audience for characterizing those on the autism spectrum. Do you feel that this is a bit like a white comedian making jokes about racial minorities?

Tony Attwood: [Laughter] I can understand that that may be an interpretation. My approach is to use humor as a way of people remembering the point.

Donna Williams: Hmm.

Tony Attwood: Humor–laughter isn’t always ridicule and [?] It can be relief of emotions for the situation. The difficulty for people with autism and Asperger’s, they’ve been laughed at. And we often have to explain to children: “They’re not laughting at you, they’re laughing at the situation. With you, and it is the situation that is funny.

Donna Williams: It took me a long time. I used to get really grumpy whenever people were smiling because they found something I did naive or endearing or whatever, and I would think: “I’m a serious, whole person. Why are you finding this amusing?” and they’d always say, “I’m not laughing at you. I’m laughing with you,” which just made me more furious. But once I became an adult, I became quite a comedian, and my father is a natural comedian–used a lot of characterization. And he’s also quite bipolar and I got those genes, too. So it’s probably a natural way that I would communicate. But the fact that I love comedy means that I like to see people using humor. I think it’s a personality thing.

Tony Attwood: It is. And I think it’s a very useful thing to get people to remember things. It is an opportunity for them to feel that they can…with each other are sharing the emotional experience. So that the laughter is a tension release mechanism, not necessarily ridicule.

Donna Williams: Do you also characterize non-spectrum people?

Tony Attwood: Oh, especially the British.

Donna Williams: So you’re saying that you…do you give equal time to taking the piss out of people on the spectrum versus taking the piss out of people who are non-spectrum people?

Tony Attwood: I think I take more humor at neurotypicals than those with Asperger Syndrome. I hope not to laugh at the person with Asperger’s. You know, it’s to laugh at the situation.

Donna Williams: Um-hm. And I mean, if we’re all tearing each other apart, sounds like we all need a damn good tickle anyway.

Tony Attwood: [Laughter] Yes, good point.

Donna Williams: Now, we live in this culture where celeb-bashing is the new football. And the militant forums particularly see famous people as fair game–even less human. I’ve certainly been on the receiving end of “Well, you asked for it, you made yourself famous.” And I find that really…it’s so saddening that human beings are like that. For me it conjures up the whole Nazi Germany thing. You’ve got these people standing by saying, “But I’m not a Nazi” and they don’t do anything, because they just want to pull their head in and say,” No, no, it’s just the culture” or whatever. So how are you feeling about this whole Colosseum-gladiator thing? Is Nero asking his favorite gladiator to come in and face the audience while they send in the lions?

Tony Attwood: [Laughter] Bread and circuses, and so on. With the celebrity component, it’s not something I’ve actively sought. It’s something that seems to have occurred to me over time. Over a long period of time. Don’t forget, due to my age, this is not sort of a Beatles phenomenon…

Donna Williams: [Laughter]

Tony Attwood: This is something that’s been acquired over a long period of time, and I think has sort of matured. My theory is, if I’ve got an ability to help people, then I will do so as much as I can.

Donna Williams: And even at the expense of being torn apart–

Tony Attwood: Sorry? What’s that?

Donna Williams: Even at the expense of being torn apart.

Tony Attwood: I don’t like the criticism that occurs, but it may be that if you are seen as a [figure ?] to a certain extent, it is inevitable that that is going to occur, it’s part of the territory, but it is not a pleasant part of the territory at all.

Donna Williams: No. So who is Tony the person?

Tony Attwood: That’s a very interesting question. How do I answer that? I suppose it’s best answered by those who know me, and there’s two types. There’s the professional person that is seen either when I do a presentation I’m [there?] clinically, etc., and then there’s the personal one in terms of the inner thoughts, feelings, family, friends and so on. So there are almost two personas, and I go from one to the other. What I’m finding is that the work persona for me has taken on a life of its own, which has become too much for me, I think, to cope with. So I look at the situation, I’m not spending as much time as I should do on personal enjoyment and activities. I tend to be working too hard. I work probably six to six and a half days a week.

Donna Williams:Yeah. Okay, well, I hope you’re gonna get out and smell the roses again. [Laughter]

Tony Attwood: Oh, I haven’t done that for a long time, and I need to.

Donna Williams: Yeah, yeah. And I know what it’s like being on the road. You get virtually no time to just be a person, and everywhere you go, people are watching you, studying you, writing about you. It’s like you can’t even fart without thinking that’s gonna be analyzed. It’s very strange.

Tony Attwood: It is. And there are times when you want to retreat from the whole thing, and just be yourself in a way, yes, and have a series of thoughts. That you just enjoy your own company, yeah.

Donna Williams: Some people have set me apart, because I’m a famous pereson, and I say that one of the worst disabilities that I have has been fame. Because it affects you on a daily level, and the way that it changes you, on the one hand, you rise to it. On the other hand, it changes something about your privacy, even personal privacy in your own head.

Tony Attwood: Yes. There is always a downside to certain things, and that is a major downside, that you lose a sense of who you were and who you are, really, and people only see this [particular?] persona, they don’t see the person who’s actually the real Tony.

DW And there’s a real strong sense of responsibility, the idea that you represent a group or that you can’t screw up. [Laughter] Not big time, anyway.

Tony Attwood: My personal belief is not to be associated, if I can help it, with a particular group. My approach has always been eclectic. When it comes to early intervention, I use a variety of strategies. I’m not 100% ABA or IBI or things like that. [unknown] value. I like to explore what may help an individual and use an eclectic approach. There’s no “Tony Attwood” approach.

Donna Williams: And then you can get accused of jumping on the bandwagon, so. I understand what you’re saying, because I’m also very much that relativist, and I can see that ABA will work for personalities that love praise and attention and admiration and recognition and all that.

But if you’ve got extreme exposure anxiety, something far more indirectly confrontational may work better for you. And if you are a person who’s extremely solitary, there’s something that’s going to address that aspect of you and still help you to be productive and included. It’s gonna work better for you. So people could say, “Donna doesn’t know where she stands,” but that’s rubbish. I know where I stand. I see the individual, and I see that people are very diverse, that needs are very complex, and there isn’t a “one-size fits all.” There aren’t the nice, neat, tidy answers, that sort of stuff. And I think that the autism movement has a way to go, and certainly non-spectrum people have a long way to go before they can understand the flexibility of ways that we can adapt to a whole range of situations.

Tony Attwood: On the topic of individuality, I think that is extremely important. Each person is unique, and needs to be looked at accordingly. And that’s why it goes back to the [old?] arguments about relationships, etc. I think each person and each relationship should be looked at as a separate component, and you can’t make strong rules about it. If somebody is in that relationship, we look at how to help that person and the relationship without saying automatically “Because you’ve got ASD, you must automatically be incompetent in this area. That’s a terrible insult, and I don’t agree with that at all.

Donna Williams: Yeah. I want to talk about this whole thing about responsibility as well, and when you are a public figure. Many people with autism have made wonderful achievements–personally, socially, culturally–and I’m not referring to Einstein and I’m not talking about Bill Gates or Speilberg.

I’m talking about individuals without verbal speech who have contributed to books, who have become public speakers. I’m talking about people with speech who have become strong, supportive family members. I’m talking about artists on the spectrum. I’m talking about, you know, people who’ve tried very hard and achieved some level in their life. Nothing high-flying, but something that works for them, you know. They’re a gardener, but they’ve found their niche or they’ve found something that they’re appreciated for. However, a vast percentage of people on the spectrum don’t have full-time work. Many on the spectrum live in shame of their diagnosis because of how enforced stereotypes: the idea they’re gonna be a serial killer or they’re gonna, whatever. Many live in social isolation with very limited social networks outside of the internet. Parents on the spectrum live in this constant mistrust of their ability to parent, and they face discrimination in courts where their condition is used against them. You’re a very empowered public figure. What do you feel that you do to improve the lot of the group that you represent?

Tony Attwood: I think if I have a sort of belief or approach, it’s one of attitude, and that is a positive, optimistic attitude for that individual. And that’s what I try to get across is, people with ASD are facing challenges that neurotypicals are very ignorant of, quite often, and very arrogant in looking at that person. And often wanting to make them a clone of themselves and anybody who’s not a clone of themselves is defective. So I try and get people to recognize that there’s more to life than just socializing, that there are those who have particular talents and abilities. And really, one of the areas I want to work on in the future is what I call the concept of self in ASD: self-esteem, issues related to a sense of identity, belonging and self-worth. Because unfortunately, neurotypicals can be quite toxic to those with Asperger’s and be detrimental to their self-esteem.

Donna Williams: I agree, and if you add to that things like alexithymia, where the self-feedback is already challenging, things like the inability to read facial expression and body language where the feedback from others, you can’t perceive it. So you’re talking about people who are already quite disadvantaged in getting that broad or positive feedback that could’ve been there, but they couldn’t process.

Tony Attwood: I try to approach people to be proud of their ASD qualities, and see that we need such people. I’m very concerned about movements that look at getting rid of autism, because [that would be?] an absolute disaster. [Laughter] Society would be…

Donna Williams: But, equally, if we have this extreme militancy and such confrontation and cyber-warfare that’s so sanctioned by any group under the name of a label like AS or autism, how’s that gonna help our self-esteem? I don’t want to look at myself in those terms.

Tony Attwood: Okay. When there is extremism, there’s a risk of notoriety and negativity from other people, and that can actually be counterproductive to such individuals. That the message may be rejected, not because it’s the message, but they way they present it.

Donna Williams: Yeah. The spectrum is as vast as the diversity of non-spectrum people, and added to this are the many who are self-identified autistics, and this often includes undiagnosed parents of autistic children who identify with parts of autism spectrum fruit salad. Where do you stand on the concept of autistic culture, and your own place within that?

Tony Attwood: I think that culture is a way of, of thinking, looking at the world, a value system, etc. What I do is I think of myself a little bit like within ASD discovering America for the first time, and seeing the land that is there. Very different. There are different ways of doing things, different languages, different priorities, etc., and I don’t make a value judgement to say that one culture is superior to the other. I think it’s just different. I think there should be cultural diversity.

Donna Williams: Yeah, I think that thing of one isn’t superior to the other has to go both ways. You can’t say it’s wrong for non-spectrum people to see themselves as superior and then say it’s okay for people on the spectrum to call non-spectrum people “mundanes,” “muppets,” come out with phrases like: “The only good NT is a dead NT” and various Nazi-type rubbish. I think that if you’re gonna talk about equality, it goes for both sides.

Tony Attwood: It does. And I’m trying to get people into the sort of middle ground, because the extremists are taking control over certain aspects of the dialogue, and the message is going to lose credibility if there are such extremists.

Donna Williams: I’ve certainly heard from people who have been shamed in these forums and basically thrown out because they won’t toe the line, so I think that does lead to this thing where they ensure it is one voice.

Tony Attwood: Yes, that [unknown] that you are for us or against us, and if there’s any way you disagree, than we will not listen to you and totally reject you, which is I think a very unhealthy thing to do.

Donna Williams: Now, you’ve been asked to personally speak with Ari Ne’eman, and there’s been this distate that you sent out a form letter instead. Are you going to get on the telephone and talk to Ari? And if not, why not?

TA I didn’t know that Ari was interested in that.

Donna Williams: [Laughter] Okay, well, apparently he’s waiting for your call. [Laughter]

Tony Attwood: That’s great, if I had his number. But Ari needs to give me his number, and I’ll give him a call, certainly, and if he’d like to meet, it’s…I think that would be a great idea.

Donna Williams: I’m happy to be a middle ground. If Ari wants to e-mail me, I will then e-mail you and you can give him a call. [Laughter].

Tony Attwood: Where is Ari based?

Donna Williams: America, of course. [Laughter]

Tony Attwood: Where in the States?

Donna Williams: I don’t know.

Tony Attwood: It’s just that I’m…I’m traveling through the States now, um, there may be an opportunity to meet up. If one of the destinations I’m going to is close by, I’d be happy to meet him.

Donna Williams: I’m sure that he’d be happy to hear it. Now, I’ll tell you something funny was when there was that huge controversy with me, and the journalist said “We’ve tried to contact her and she’s refusing all contact,” in fact I had offered her an interview with me and my brothers and she turned it down. Then they had this magazine thing–“Oh, she’s on the run. She’s in hiding.” I actually answered the telephone to one of the journalists, so it’s amazing how people…if it doesn’t fit their agenda, so it doesn’t come out that way, you know? [Laughter]

Tony Attwood: Oh, that’s a [pile of cute?] characteristics, that is. [unknown] and see if it fits their beliefs and if it doesn’t, they don’t know it exists.

Donna Williams: They’ve made it sound that you don’t want to have a diplomatic discussion, and, if I’m right, you’re giving me the impression that you’re ready for a diplomatic discussion, but not ready to be told what you’re meant to do and whose butt you’re meant to kiss.

Tony Attwood: [Laughter] I’m very interested in a dialogue and some degree of understanding. I think that would be very healthy.

Donna Williams: But you’re not ready for brown lips just yet.

Tony Attwood: [Laughter] Or brown-nosing, no.

Donna Williams: [Laughter]. Okay. Tony Attwood, thank you.

Tony Attwood:…And what you’re gonna do is put this on your webpage.

Donna Williams: Yeah. This’ll go onto something called Oddpod, and I’ll be linking to it from my blog. I’ll probably also write up an intro for it and put it on American Chronicle, and then link to the podcast.

Tony Attwood: Nice talking to you, Donna.

Donna Williams: Nice talking to you.

Tony Attwood: I admired your [unknown] excellent questions. I thought they were very good, and let’s hope we can get some positive dialogue going….

Donna Williams: Yeah, good.

Tony Attwood: I’ll end the call now.

Donna Williams: Okay, bye.

Tony Attwood: Okay, bye.

3 Responses

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  1. errantpenny said, on July 20, 2009 at 5:18 pm

    I’ve also transcribed the podcast, and posted it in two posts on the livejournal asperger forum. Our transcriptions are very close!

    Part 1: http://community.livejournal.com/asperger/2365214.html

    Part 2: http://community.livejournal.com/asperger/2366382.html

  2. […] the entire transcript of the interview or listen to the podcast at […]

  3. Linda Mad Hatter said, on December 22, 2012 at 6:17 am

    Thank you for this. I can’t listen to podcasts, and this was very good 🙂

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