Dr. Jeremy Sharp (00:34)
Hey folks, I am really glad to have NovoPsych Psychometric sponsoring the show. If you do structured assessment work, then you will likely love NovoPsych. NovoPsych brings 150 plus standardized measures into one platform. What I particularly like is the extra layer of psychometric interpretation. So it helps you understand what scores actually mean. So the results are easier to communicate. If you are interested in high quality measures for personality, disability, ADHD, or autism,
You can try NovoPsych with a 15 day free trial via the link in the show notes, is novopsych.com slash testing psychologist. That’s N-O-V-O-P-S-Y-C-H.com slash testing psychologist.
Dr. Jeremy Sharp (01:21)
Hey folks, welcome back to the testing psychologist. Today’s guest is world renowned. You’ve likely heard his name at some point in your career. If you work with autism at all or autistic individuals, professor Tony Atwood is one of the world’s foremost specialists on autism. He brings over five decades of experience and a PhD from the university of London to the global stage. He’s currently an adjunct professor at Griffith university. He’s authored numerous.
publications in this field, including his world renowned book on Asperger’s syndrome, which was translated into over 25 languages. Tony is dedicated at least 30 years to clinical practice and continues to share practical insights through international workshops and his co-founded venture Atwood and Garnet events. His career is defined by a transformative vision to shape the narrative surrounding neurodiversity.
focusing on celebrating the diverse strengths and talents of autistic individuals to foster a more inclusive society. So this was truly a gift to be able to talk with Tony in this podcast interview. I bought the book, like I share on the interview way back when I got into the field and it was a highly recommended text at that time and remains a super informative, important piece in our, in our work.
So Tony and I get into many things that only someone with 50 years of experience in research and practice can speak to. So we talk about the history and evolution of our understanding of autism since about 1970. We get into prevalence rates of autism and reasons for increasing prevalence. We talk about the female autism phenotype and what autism looks like in girls and women.
We talk about pathological demand avoidance and Tony’s view on PDA, where it comes from, what it is, how we can think about it as clinicians. talk about how to assess autism and specific measures that can be helpful. talk about the role of the ADOS2 and its pros and cons from Tony’s perspective and talk about the future of autism and what autism is looking like in older adults as well as gaps in the research and what we
need to continue to investigate to further the field. So there’s a lot to dig into here in this conversation. And like I said, if you work with autistic folks at all, there is so much to take away from my talk with Tony today.
Before we get to the conversation, as always, I would love to share with you some information about crafted practice. There may be spots left. I’m recording pretty far ahead of release, so I can’t predict anything. And if the spots are taken, I apologize. But if they’re not, it’s worth going to the testing psychologists.com slash crafted practice to check out the information on this business retreat. It’s the only business retreat for testing psychologists. It’s in person in Colorado.
this summer and we spend three or four days together just talking about our businesses, working on the businesses, getting support, making connections, having fun, getting massages, relaxing, walking by the water, running, walking, whatever you want to do. So it’s meant to be restorative and connecting and also a time where you can actually get things done in your business that you may have been putting off for a long time. So like I said, go check it out. The testing psychologist.com slash crafted practice.
But for now, I want to give you this incredible conversation with Professor Tony Atwood.
Dr. Jeremy Sharp AI (05:15)
Tony, welcome to the podcast.
Dr. Jeremy Sharp (05:17)
am glad to have you. I have to say this is one of those moments. Your book was one of the first ones that I ever purchased related to autism or Asperger’s as it was back then. And this is a real moment to be able to chat with you here on the podcast. So thanks for being here.
Tony Attwood (05:32)
Yeah, this is, I always wanted to work in the area of autism. I’m, I’m to be a bit of an expert, but I’ve exceeded expectations because you’re actually one of millions of people in 27 different languages that read that book. It was the right book at the right time.
Dr. Jeremy Sharp (05:50)
That’s a good way to put it. Yeah. Yeah. Yeah. Well, I’m thrilled to have you and glad for your time here. So I’ll start with the question that I always start with, which is, you know, of all the things you could dedicate your time and energy to, why this, especially for you, you’ve been doing it for a very long time. So why continue to choose this topic area?
Dr. Tony Attwood (06:10)
Yeah, I chose this in 1971, before many of the people watching this were actually born. And I’d done one year of psychology, decided to be a volunteer at a special school and met two autistic children. Now, in 1971, our knowledge of autism was the highly conspicuous non-speaking in a world of their own, autistic individual, looks like anyone else, but
communicates socially and sensually is incredibly different. And I found that absolutely fascinating. And this is a podcast being made in the United States. And I saw myself as Christopher Columbus discovering a new continent with new people, new circumstances, et cetera. And I have been explore autism now for actually 50 by.
Yes, I’ve been exploring it. And I was talking to a colleague the other day and I said, I discovered autism and autism discovered me. And since then, I’ve really enjoyed the exploration.
Dr. Jeremy Sharp (07:17)
that’s a good way to put it. Yeah. Yeah. that I know it’s been around for, you know, a while, but the research really didn’t gain a lot of steam, for a long time. So you were definitely on the forefront and you’ve seen a lot change. would imagine. Yeah.
Dr. Tony Attwood (07:31)
Yeah,
yeah, that really leads into the what changes have I seen? Well, first of all, when I began early 70s, the view was it’s I autism is either an expression of schizophrenia and psychosis, and is very much a psychiatric mental institution. Or it was the site, Bruno Betelheim and others. Because her child, which is terrible insult to parents of autistic individuals.
So we moved away from that and then started to recognize it’s now what we call neurodevelopmental. The brain is wired differently. Recognition, if it is anything to do with the family, it’s to do with genetics rather than bad parenting. And originally, the view was autism is rare, one in 2,500 kids, very conspicuous, high support needs.
And I was there in the mid 70s, early 80s when there was a realization that autism is not just that narrow band of high support needs individuals. It includes those who can talk, who may get a job, but have the same issues. And I found as a clinician, as I was visiting the families of a severely autistic child, they would say, Tani, can you see our daughter or our
some. Now they’re not autistic like their brother, but they still have problems socially, sensually, and there was an echo of the cat in family members. And that’s what we started to explore, what with Lorna Wing, Ruth DeVrith and others and so on. And so we realized that it is, first of all, it’s always been there. Autism is a part of human nature.
There are certain characteristics which we identify, but we also started to find those who camouflage their autism. That’s another major topic. And suddenly realized that autism is now one in 36 individuals and the male female ratio is two to one. And that is changing. It may be that there is parity in there. So I’ve now met Nobel Prize, university professors, colleagues, all sorts of people
who have the characteristics of autism, but are certainly not the non-speaking, high-support needs people. So that’s been my journey, is exploring the various tribes in autism in the New World.
Dr. Jeremy Sharp (10:00)
Sure, sure. Yeah, I mean, I think at least from my perspective, the big reason or couple reasons for the expansion of prevalence, I suppose, is yeah, like including more folks in the spectrum, right? It’s not just those high support need kiddos and adults and the maybe recognition that there’s more there are more autistic females, right? Before we go any further, I don’t know. I want to check that out with you.
Does that kind of match your understanding or are there more reasons that you would attribute to the kind of increase in prevalence over the years?
Dr. Tony Attwood (10:35)
Yes, think there are more females than we first thought, but I think there are many autistic individuals who are coping really well. They have the characteristics, but not the disability. And that may be the ultimate of certain autistic individuals. So I think it is a part of human nature, and often the severity of expression, but also circumstances, trauma, all sorts of things, anxiety disorders, eating disorders.
anxiety disorders, substance abuse lead to the person being recognized. And often I find clinically, psychologists will see someone for gender, for example, or an eating disorder. And when they look at the developmental history, they start to recognize, hmm, few autistic characteristics here confirmed. It’s also in the forensic area too.
addiction and so on. So if you’re a psychologist you’ll come across autistic individuals from relationship counseling to care of the elderly.
Dr. Jeremy Sharp (11:38)
Yeah, yeah, yeah, that makes a lot of sense. That makes a lot of sense. I want to maybe focus a little bit specifically on women and girls, you female individuals. I would love to hear. mean, this is a big part of your work. You know, the female autism phenotype. And I would love to hear from you just like what that experience was like and how you maybe started to recognize that these these women and girls are out there and
They maybe just look a little different than what we think autism looked like.
Dr. Tony Attwood (12:14)
Yeah, the history of that is you have a diagnostic assessment clinic and most of the people coming through are males. And we started to get women coming through who said, I think I’m autistic, but I’ve hidden it from people. I’ve learned to fit in with people, but it’s not the real me. Do you think I’m autistic? And it may be that they have an autistic child.
And they say when I was asked to go through a checklist of my child’s abilities, that was me as a child. I think maybe I am on the spectrum. And so as we explore such individuals, we analyze their childhood. And one of the things that autistic individuals know, and this is really talking about those who have fluent speech go to ordinary school and so on, is that they start to know they’re different when they’re four, five, six years old, especially
socially, there are things going on that are overwhelming, confusing, they try and join in, they’re looked at as though they’re stupid. They have sensory sensitivity to things that others are bothered about. What do they do to cope with that particular noise and so on? And so when you know you’re different, you either internalize, you can become depressed and dejected. You could also externalize and there’s quite a few external versions.
But one of them is autism, you’re very good with patterns and systems like mathematics, the study of patterns. And so in your wanting to socialize, and there are autistic extroverts who want to socialize, would like to be part of it, but are clumsy when they do so. And what they do is they stand back and they observe and they’re great observers of detail and patterns.
And if they make inventions, they learn them. And it’s by intellectual analysis. They’re often teased because they’re on their own. And they know that if they’re in part of a group, they’re less likely to be targeted. So for their own safety, that occurs. And so they learn to suppress their autism. Don’t rock. Don’t talk about horses. It bores everybody. These are the things you are not.
to do and you suppress them. And as one autistic woman said, I cracked it. You’ve got to pretend to be happy. No matter how you feel, you’ve got to smile. What you’ve got to do is you’ve got to let them talk about themselves. Then they think you’re wonderful because they can talk about themselves and you just listen. So you, you learn those strategies, you become an artificial self. It’s the death.
of the real person, so there’s a grieving reaction. It’s a lie, it’s exhausting, because at school you’re learning the academic curriculum and the social curriculum, so you’re exhausted. And only parents will see the real person. That’s never seen.
at school, they would never allow people to see behind the mask. And then there’s a realization often in the adult years of, can’t keep doing this. This is causing me stress. I’ve got all sorts of psychiatric and medical problems from stress related things. And so that person then starts to think, I can’t keep up the pretense. I want to know why I’m different.
And we often find that the diagnosis of autistic women is a great sense of relief. You’re mad, bad or stupid, but it’s also to improve confidence in removing the mask and being the true self. So it’s a fascinating journey of self discovery. We’re helping individuals discover who they are, not to change who they are.
And that’s a major theme as the change in transformation of autism is more acceptance than correction. And those have been significant changes.
Dr. Jeremy Sharp (16:14)
Yeah, yeah, certainly, For any folks who may not be aware, I would love to hear straight from you how you would define, you know, what we call the female autism phenotype now.
Dr. Tony Attwood (16:25)
I think there are male-female differences. These are gross generalizations. Of course. But I’ve known a number of autistic women who have been very talented in the arts and the caring professions. They have been remarkable in their drawing ability, in their ability to sing in perfect pitch, that they can create and play music. They are a fine artist. So there can be a greater development in the arts.
But also in the Caring Professor ago, I said, you observe, analyze. That’s psychology. And many autistic women have a wonderful heart and they’re very kind.
Dr. Jeremy Sharp (17:04)
Mm-hmm. Certainly.
Dr. Tony Attwood (17:07)
and psychologists say, I think I’m artistic. And I’m saying, yes, you are. And it made you a good psychologist because you became a psychologist at four years old.
Dr. Jeremy Sharp (17:18)
Yeah, I mean, they’ve been practicing, like you said, pattern recognition for years, pattern recognition and analysis. These are valuable skills in our profession.
Dr. Tony Attwood (17:29)
Yeah. Yeah. And so I think there’s also a fascination looking at historically who could have been autistic. Carl Jung and B.F. Skinner, I think, would be my top two. They were odd individuals, but I think that they had some autistic traits.
Dr. Jeremy Sharp (17:48)
Mm hmm. Yeah. Yeah. I mean, think that’s always interesting to look back and kind of recognize retroactively these folks just based on what we know about them and their reading or their writings and so forth. Yeah. Yeah. So I want to. Could you
Dr. Tony Attwood (18:03)
I was going say that autism is a different way of thinking, perceiving, learning and relating, but can be very original to think outside the box, and the autistic person says, what box? And they see connections and patterns that other people don’t see, which leads to great advances in science, arts, but also psychology.
Dr. Jeremy Sharp (18:24)
Yeah, absolutely. You you said something a little bit ago. I actually wanted to, I don’t want to forget. And the way you phrased it, said something along the lines of, know, there are folks that have autistic characteristics, but it’s not a disability, something like that. I’m paraphrasing. And that made me want to ask the question just around like how you think about,
diagnosis of autism, suppose, where, know, if someone, let’s say, has, you know, these autistic characteristics, but it is not causing, quote unquote, functional impairment in their lives, you know, would, is that someone who would, quote unquote, qualify for an autism diagnosis in your mind if there’s not that like clear functional impairment?
Dr. Tony Attwood (19:14)
Yeah, this is a good question. First of all, it relates to DSM five that has the diagnostic criteria that autism will affect their quality of life in terms of employment relationships, etc. And that’s a very appropriate comment to make because DSM five actually is about money. It’s about access to insurance companies funding that they pay for a psychologist or a psychiatrist.
And so it is a gatekeeper to financial support. But it’s also appropriate. I tend to use the phrase, not diagnosis, but I say today was the day we discovered your autism. And the point of that discovery stroke diagnosis is self understanding. It’s to look at their past through the eyes of autism. It makes sense now. It’s clearer.
Now I know why that was difficult for me or why that was easy or why people reacted to me that way. So you have a lot of closure and stopping the rumination of why would they do that to me, et cetera, but also making better decisions in career. For example, don’t go into management. And at the moment you start to be team leader, you’ve got pressures that are not easy for you to do despite being good at
work. I’d see that as a discovery. It’s officially, they don’t, and I say you’ve got the characteristics but not the disability. It has made you a very successful engineer or opera singer and you can now describe to other people, I’m not a great socialite, I like to be on my own, sorry guys, I can’t make the party.
Dr. Jeremy Sharp (20:56)
Yeah, that’s reasonable. So I want to pivot just a little bit. Yeah, we’re going to talk about so many things, but I would love to hear your perspective on kind of gaps in our research at this point. It feels like, mean, we’ve come a long way since certainly since you got into it, even over the last, gosh, 10 to 15 years, I feel like we’ve come a long way in terms of recognizing, you know, girls and women and maybe lower support need individuals. But
Dr. Tony Attwood (20:59)
So.
Dr. Jeremy Sharp (21:26)
Yeah, we still don’t know a whole lot. I don’t know a whole lot about what autism looks like in older adults. I’m really curious what you’re thinking in that realm.
Dr. Tony Attwood (21:35)
Okay, if I had the power to allocate funding for research, and I was head of the department of whatever it is, these are several areas, not in order of priority, but these are the areas. First of all, the non-speaking, profound autistic individual. Currently, only 6 % of research is on such individuals, but they’re 25 % of autism.
And so in years gone by, nearly all the research was on that group. It’s been abandoned and people aren’t evaluating approaches. Yes, ABA, yep, it came in, but that’s actually quite ancient now. What new approaches could be used and evaluated for such individuals to improve communication skills, to improve the learning and emotion regulation? So needs to be a lot of research.
not on diagnosing such individuals, but finding therapy and support programs and evaluating them. Secondly, is sensory sensitivity. It is excruciating for the autistic person. They don’t get used to it. They learn to endure it, but it is incredibly painful. Why?
what is going on in autism that makes that person have a startle reaction and painful reaction to a dog barking or it could be to fluorescent light or a particular aroma. So why does sensory sensitivity occur? But also importantly, how can you reduce that? In fact, sensory sensitivity is perhaps the first thing we notice in newborn
autistic individuals. When we say to parents, what did you first notice was different? The stash, I just use the vacuum cleaner and they were really somebody coughed and they started to cry. So it’s something that is there right from the beginning. It’s one of the first things that occur. Well, I think there’s a cascade effect that there are aversive sensory experiences.
it should we say is an amygdala reaction to that perceived threat. And the reaction of the amygdala leads to problems with emotion regulation, anxiety disorders, etc. So you have, should we say a cascading effect. But the other one is aging. I recently was one of the supervisors of a research study interviewing aged autistic individuals, some of whom I knew, and asked them,
what worked and what didn’t work. Quite a few of them said, I had to discover it myself. Nobody’s going to tell me what to do. And I discovered yoga or I discovered those sorts of things. And ⁓ also for those who have been successful, one of the things that occurred, one of them is I’m no longer so self-critical.
I’ve come a long way. People don’t know how far I’ve traveled to get the achievements I’ve got today. I’m a pretty good person to be able to do that.
So instead of being self-critical, they were recognizing their particular qualities.
That’s so good factors was he and a partner Yeah, it can really make a huge difference. Some of my work is actually on relationship counseling to support autistic individuals. But there’s also research starting to occur on the aging medical issues. Is there a high level of dementia? Hmm, possible. High level.
of heart disease and the person has had an stressful life and many stress-related conditions could be associated with autism.
Dr. Jeremy Sharp (25:30)
Let’s pivot just a bit to talk about some of more recent, I would say, I don’t know if you’d say controversial, but certainly interesting topics in the field of autism. And one of those is pathological demand avoidance. I am very curious how you look at PDA and what it means to you and how we might work this into our understanding of autism.
Dr. Jeremy Sharp (27:11)
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Dr. Tony Attwood (28:17)
think I’d start historically. Elizabeth Newsome in Nottingham in England, I knew her, noticed a pattern in some of the autistic individuals she saw. She ran a clinic and it was a clinic for those who are real challenged and other people. What on do we do? And she noticed a group of individuals who were notorious for refusing to reply to requests.
ask them to do anything simple, put their shoes on or clean their teeth. There was a huge reaction against it, sort of, you’re not the boss of me, I’m not going to do it. And there’s a recognition that there’s something driving here that you have so often coming through. There’s a pattern. And I say PDA isn’t a diagnosis, it’s a pattern of behavior that is important because it can then
ensure that your approaches are going to be appropriate. For example, if you make a request, a choice, you can put your shoes on or clean your teeth. The choice is yours rather than clean your teeth. So there are adjustments that can occur. So with those individuals coming through that have this particular profile, it seemed that it wasn’t oppositional defiant disorder. They weren’t reacting against authority. It wasn’t that.
It was autonomy. And the person wanted to control their life. Now that control can be associated with high levels of anxiety. And that’s what the kids and adults have, is high levels of anxiety. Also aspects of anxiety, autism, and ADHD as well. They seem to combine. And we’re also suggesting that there may be some trauma, not necessarily trauma from parents, but from
peer group and so on. So the individual is aware of aversive experiences that can occur in their life, social sensory change in particular. And a lot of, in fact, one of the diagnostic criteria for autism is an aversion to change. And you’re doing something and somebody’s asked you to change it. It’s not on your plan. And so there’s going to be any negative reaction. And the children
learn there are three stages in their reaction. First of all, check, are they serious? Can I carry on with what am I doing? And they’ll forget about it. Are they very good at, mom, you look so beautiful in that dress. And mom goes, thank you. And they learn some wonderful distraction activities. Or I’ll do it. Or creative. A crocodile ate my whatever it was.
and that inventiveness is quite engaging. But if that doesn’t work, you’re dealing with the anxiety fight, flight, freeze, and all three will occur with PDA. There can be a fight reaction. That is, you can have a six, seven, eight-year-old using obscenities that would embarrass a sailor. And what they’re doing is flight in that one.
They’re not escaping, but they’re making you go away. They will be noxious, so you leave them alone and they know what to do. It can also go into fight. There’s a big meltdown associated with that. But it can also be freeze. And some say, I know how to do it, but I can’t do it. It’s like situational mutism. I can talk, but I can’t.
So it means that our approach is seeing this as an adaptation to the combination of extraordinarily high anxiety, autism, ADHD, possible aversive experiences in life. And hopefully with a degree of understanding and recognition that, first of all, parents need a lot of support because they’ve been trying to adjust and say, how does my child do that?
They’re certainly not copying it from anyone else. And so they’re, what am I doing wrong? And so it’s new area. It’s a pattern of coping mechanisms, but not, I don’t think, a distinct diagnostic category.
Dr. Jeremy Sharp (32:26)
That makes sense. Yeah. And am I understanding correctly that you may not necessarily see PDA as a specific subtype of autism, but more of like a trans diagnostic presentation that could happen with anxiety, ADHD?
Dr. Tony Attwood (32:40)
I would say it’s an adaptation to the profile.
Dr. Jeremy Sharp (32:45)
I see, I see. So do you see kids who do not have autism who do have PDA?
Dr. Tony Attwood (32:53)
another good question. Yes, I do. Sometimes I’ve seen an adult recently who said, I’ve got PDA characteristics, but I don’t think I’m autistic. Can you check if I’m autistic? And we did. And we said, no, she was not autistic. But she has, it’s a coping mechanism. And I think there are different pathways to the same coping mechanism, but it is not essential.
that you’re autistic. Christopher Gilbert has looked at this area and has noticed that it can occur in other conditions. So it’s a behavior rather than a particular condition. Yeah.
Dr. Jeremy Sharp (33:31)
Do you have any sense of the etiology of PDA? Is it something that we can trace back to anything in particular?
Dr. Tony Attwood (33:38)
look, this is where if I could do the research, I’d love to do it because you’d have to do in part a retrospective analysis of when did this begin. You can also start looking at PDA can exist in families. So you may observe some of the younger kids to see it developing. So if we knew early on that this is a coping mechanism that could become embedded in that person’s
profile, what are the ways of reducing the risk of that? Because it means that often there’s a high level of school refusal or school rejection because of that. There are major problems in talking to PDA adults in jobs because they won’t do what the boss says. And the boss says, no, I’m not doing that. And so they don’t get the career options. When I talk to the PDA adults, they say,
over time and it’s taken decades, I’ve learned to hold back on this because it’s not good for me. But that has to be a conscious decision or I’m self-employed. I make the decisions. I’m a trades person. I’m whatever it is. I’m a single person. do what I want to do in my own time, in my own way. And that suits me. Nobody tells me what to do.
Dr. Jeremy Sharp (35:01)
Yeah, yeah, that makes a lot of sense. I mean, this is one of those topics that comes up a lot, and I think we’re still wrestling with it and trying to figure out exactly what’s what’s happening here. So hopefully someone will do that research.
Dr. Tony Attwood (35:15)
Yeah, a lot of the movement of PDA comes from parents. And what they’re doing is saying we’re having problems. What we’ve not got yet is established research and research teams, as we do for girls, example, University College London, Will Mandy and others are world leaders in this. So somebody needs to pick up the ball and run with it because its parents are saying, what do do?
Dr. Jeremy Sharp (35:41)
Certainly. Yeah. I think those are the most urgent cases that we see in our practice as well. You know, it’s, it is hard. It is really hard. You know, I’m, a parent, know, kids are tough. when they go down this path of, you know, this refusal and demand avoidance, it’s, it’s really challenging. get it.
Dr. Tony Attwood (36:01)
It is, but it also affects the other kids in the family. also means that often you can’t go out places because they exploded at McDonald’s and so on. we need that. I know we’re talking about does it exist or does it not? As a matter of expediency, we need some ideas of what to do.
Dr. Jeremy Sharp (36:18)
Sure, sure. mean, it’s something and we need some ways to support those individuals. yes. So another potentially, I don’t know if you call this controversial, I don’t want to be dramatic, but you know, there’s a lot of talk about the ADOS and how helpful it is and the diagnostic process for autism. So I kind of use this as a little bit of a bridge into clinical practice as well, but I’d love to maybe just start and get your thoughts on the ADOS and how
you know how helpful it is at this time, this day and age in autism assessment.
Dr. Tony Attwood (36:54)
OK, I’ve been officially as a clinician focusing on autism for 50 years. So I very much see the historical context. Now, the ADOS, the original ADOS, and towards that credit sense, ADOS 2 was designed to identify young autistic children for early intervention and progression along the continuum. And it’s brilliant. If you’ve got, at the time of its design,
what we thought autism was. It was superb. It still is superb. However, it has been pushed into areas that it was never really designed for or standardized on. It was designed for children. And many of the activities, if you do them with an adult, the adult becomes, this is an insult. What? You’re treating me as a child. You think I’m intellectually disabled.
And then the psychologist, I’m sorry, but I have to do this. It’s a part of the test. And you have to excuse material that you’re doing. And it didn’t have enough in the original sample of autistic women and understanding the difference. For example, the ADOS will say, do they use sexual gestures? And for example, they say, I don’t know. This is a chart. And that, I don’t know.
I don’t know. The thing is in ADOS, they made the appropriate gesture, but it’s stylized. It’s copied. It’s not really looking at how did they achieve it. Is there a qualitative difference? And there needs to be the recognition. There’s a quality of it being artificial. And that is not necessary because when I’ve done the ADOS training three times, I’m going, no, no.
Hands up, there’s no, no, you’ve got to do this. And it becomes almost a legal document. know that it’s got to be the letter of the law, not the spirit of the law. And so I would love to have an ADOS five and six or modules five and six that are really designed. So when it comes to a diagnostic assessment, the ADOS has some good bits.
Absolutely. And I would say there are certain components of it in the conversation that are very appropriate. So use parts of it, but please do not use it as the exclusive instrument for confirming autism.
Dr. Jeremy Sharp (39:16)
fair, what parts do you feel like are best?
Dr. Tony Attwood (39:20)
Talking about friendships, relationships, those sorts of things, it’s some of the conversational parts. It’s some of the activities which involve the ADOS toy kit, really, which is designed for young kids. And you’re losing rapport with the person at the time. Credibility is going to be questioned. So I don’t think you can do it by necessarily going through
the toys, but what you can do, for example, is use photographs of social situations. It’s like the old thematic interception test. What’s happening in this picture? And they noticing the objects, not the… what’s happening here? So you’re not using children’s books and frogs on lilly pads. You’re using a group of adults interacting, something from friends, for example, a scene from friends. What’s happening here?
And are they reading the various signals that are occurring here? So it’s also what I do in a diagnostic assessment of another. I have a script and that will change. It’s not rigid because I will let it flow in different directions. But I have I use the DSM five as a structure and I have a list of about 20, 30 questions for each of a
and B, and also the other components, CD, et cetera. And I do find that the best way is a conversation. And what you’re doing is you’re checking for autism, but also validating it. Because the person is smart enough to know to either give you the answers to get the diagnosis or avoid the diagnosis.
I’ve got to be diagnosed and that’s her decision. I don’t want to be here. And so I’ve got lots of friends. Yeah, I have no sensory sensitivities or I have extreme centuries. In other words, it’s a cry for help. So as a clinician, you’ve got to validate the answers in the quality of them, because some will have read all the information on autism on the Internet. Is it a textbook answer or is it a natural answer? So a lot of it is
historical, current and validation of what’s occurring. And gradually you get a schema for autism. And does this person fit the many schemas? One of things that I’ll do in that is though, if I’m doing a diagnostic assessment, it’s usually two of us will do it. One of us is the lead for the questions and interaction. But to make notes is
disrupting the flow and so on. So a colleague, Michelle usually, will observe or she will lead and I will observe noticing things that you may miss if you’re engaged with the interaction. you have a second
Dr. Jeremy Sharp (42:06)
team
approach. Yeah.
Dr. Tony Attwood (42:09)
And then we meet afterwards. say to the button, we’re going to take a break now. Michelle and I are going to have a chat and so on. And then we’ll go through what did we notice? Do we think it’s OK? Where do we go from here? So it’s useful to have that second opinion and to have a conversation that is exploring the events and the, shall we say, the authenticity.
That’s not in any textbook. No, no, that’s a lovely quote. And you go, no, that’s it. Yeah.
Dr. Jeremy Sharp (42:40)
Sure, sure. So I have two questions. One, are you willing to share even, you know, a question or two from that list of 20 or 30 that you mentioned that you may use in an interview? And the second question is, when you’re working with adults, how do you get at childhood history in an accurate way? We find that a lot of adults maybe have a hard time either remembering or reporting.
things when they were kids.
Dr. Tony Attwood (43:06)
OK, yeah, I did have a moment or two before we started to look at things that might be interesting. And this is what I’ve got here. It’s not copyrighted. It’s just something that myself and two colleagues worked on. And just by chance, A1, DSM, difficulties with social initiation and response.
Do you find it hard to approach others about things you would like or need to discuss with them? Do you have difficulty entering into a social group or conversation? Do you frequently interrupt others in conversations? Do you find it hard to engage in small talk? A lot of the conversation is, I hate small talk, don’t know what to Okay, we go through that, nonverbal relationships. We look at speech and movements, that is,
the prosody, pedantry, and pragmatic aspects that are going to be there. B, we look at any particular mannerisms and so on, but usually with the IQ in the normal range, there’s going to be few of those or they’re going to be suppressed, but sometimes they’re there. Coping with change, a series of questions, interests. Also, do you consider yourself or have you been told?
that you’re a perfectionist. Do you like to collect and categorize items? You have a large collection of factual information, sensory. Now, when it comes to childhood, the several things that can occur that are helpful, ask them to bring along a photo album of their childhood.
Dr. Jeremy Sharp (44:35)
MMMM
Dr. Tony Attwood (44:37)
are taken in social situations and that’s a good trigger and you’re not face to face, you’re triangulating, you look at the picture, this was your brother’s 10th birthday party, there you are, they’re all looking in that direction but you’re looking somewhere else and so on, or smile for the camera and but you’re not smiling, no because I wasn’t happy, it’s all sorts of things so we tend to use photographs, school reports
I wouldn’t say necessarily that helpful because teachers wouldn’t necessarily know what to look for at that stage in that person’s life 20, 30 years ago. But there’s also trying to find someone who can come with them to validate. It may be a relative, it may be a brother or sister, it could be a friend. And they may be able to give other examples for that individual. So we often say now,
You’re here because in some ways you may be different to other people. When did you first notice that you were different? And then what were those differences? And how did you cope with that? And were you targeted by other people for being different, et cetera?
Dr. Jeremy Sharp (45:48)
Sure. These are great questions. And did I see somewhere that somewhere you will sometime to ask who are you as a question? Is that?
Dr. Tony Attwood (45:56)
Actually, that’s a central one because often the person is there because of that concept of self. Autism psychologically and the concept of self is incredibly important because the sense of self has been based on the rejection and criticisms of the peer group in the teenage years. they have often a low self-esteem because of that rejection and that humiliation and bullying and teasing by the peer group.
But there are other factors too. One is a term that I call Alexi persona. Now you probably know about Alexi thymia. But I created the term actually Alexi persona. It’s a vocabulary for personality And so when I asked what is your personality? I don’t know what a personality is.
I don’t think I’ve got a personality. So when you ask a non-autistic person, who are you, their description is usually grounded in social network and personality descriptions. But in autism, it’s by what they do and know. I’m an accountant. OK, can you tell me more? What about your personality? I’m a good accountant. You’re sort of finding that they
Don’t often you also notice when talking about the developmental history, the absence of descriptions of the thoughts and feelings of other people at the time, but also an absence of words to describe personalities. So those are some of the qualitative differences.
Dr. Jeremy Sharp (47:32)
These are great. These are great. What other tools are you using in an autism assessment? And we talked about the ADOS and some of your personal questions. Are there other tools or measures that you found helpful?
Dr. Tony Attwood (47:45)
Well, obviously the screening instruments, the original one by Simon Baron Cohen, the AQ, has been superseded because it really didn’t have enough for bad autistic women. It was designed well over 20 years ago, and we now have screening instruments standardized on women, for example. Because in childhood, have different nature. Friendship for girls is different to friendship to boys. Interests are going to be different and so on.
So it’s very much using the questionnaires, but what you do in the diagnostic assessment is you’ve got the questionnaires and you validate them. Can you give me an example of, okay, and what was happening there, et cetera? So we use those. also screen, we use the DAS, depression, anxiety and stress scale to measure depression and anxiety, which can be high. We also screen for possible trauma because
trauma can produce autistic-like behaviors, and then you’ve got the differential diagnosis. You’ve also got to go through what other diagnoses have been considered, borderline personality disorder, for example, or schizoid personality, where the person says, sort of, but it didn’t really fit, but also screening for ADHD as well. So it’s actually quite a broad exploration of the individual.
How have they perceived life? How have they related to people? But one of the key components is also the sensory profile of that individual and the descriptions of that. Sensory sensitivity is not unique to autism. It exists in the prodromal stage of schizophrenia, but also in ADHD. You’ve got the startle. But there’s a quality, variability, and depth to it that is part of autism.
Dr. Jeremy Sharp (49:32)
Do you see value in neuro-psych testing in an autism assessment? Like cognitive, executive functioning, memory, that kind of thing?
Dr. Tony Attwood (49:39)
Yeah,
more not necessarily to confirm the diagnosis, but for daily life, because there are the executive functioning problems. And that’s going to affect not only employment, but also relationships as well. And there can be negative effects in that person’s daily life. They can’t get their act together to start. They the house is full of unfinished activities. They can’t cope with various situations and so on. So that’s part of the
comprehensive assessment, but I wouldn’t necessarily, I don’t think in the standard neuropsych testing, there is anything that I would say is an obligatory test for autism.
Dr. Jeremy Sharp (50:18)
Yeah, yeah, that’s fair. That’s fair. I do want to ask you about autistic burnout before we start to wrap up here. you know, there’s a lot being said about autistic burnout, but I think it might still be kind of misunderstood. would I would love to hear your perspective on what is autistic burnout? How do you define it? And then we could talk about, you know, how we kind of interact with it as clinicians.
Dr. Tony Attwood (50:42)
Yeah, autistic burnout is exhaustion. In other words, to cope, the person has been using a huge amount of mental energy to process social situations, learn the art of conversation, to cope with change, to suppress your anxiety and your desperate need to escape the situation, all those sorts of things. In other words, it is coping with autism, but it’s also coping with a non-autism friendly environment.
Now, if you’re camouflaging, nobody knows the effort that goes into it. And you’re assumed to be successful, but without realizing the personal cost and the exhaustion associated with that. And so what seems to occur is it’s a mixture of being autistic in a non-autism-friendly world and no longer having the energy or the resources to keep up the requirements of what’s there.
And so people will say things like, take two weeks off. You’re obviously absolutely worn out. Take two weeks off. Two weeks off, won’t cut it. No, I’m sorry. So things are piling up at that stage. And then you’ve got to go back, and then there’s even more. So you do need to take a break, for sure. But it’s not going to be as simple going on holiday to Mexico or whatever. It’s going to resolve it. You’re going to come back fully refreshed.
Because you’re going back to an environment that is toxic to mental health. And so there needs to be analysis of what is it? What are the things that stress you out? It’s the sensory. It’s the boss is suddenly changing the job requirements. It’s the office politics. It’s the gossip. It’s the innuendos of things like that that are going on. And really find out it’s really a stress assessment for that individual. I developed with a colleague
of Maya Toda, what’s called energy accounting. We just written a new book on that. And it goes through one of the things, and we use the metaphor of a bank account. These are deposits and these are withdrawals. First of all, withdrawals, what drains you of energy? Socializing, crowds, change, sensory sensitivity, dot, dot, dot, What should we say infuses you is a deposit, like a bank account, of energy, solitude, being with pets, et cetera. Right. We then have a currency, zero to 100.
socializing yesterday, zero to 80. OK, the changes that occur, oh, 60. Century, century, oh, 95, et cetera. OK, now what opportunities did you have to recover these, OK, right reading books, et cetera, 20, 30, 20, 30? OK, there’s a bit of an imbalance here. You’ll keep going. And the problem is, in many ways, burnout
actually evolves into depression. depression you think there’s no way out. There’s nothing I can do to change it. But it precedes that. But if you reach a stage of this is my life, I can’t ever cope with it. What’s the point of life? That’s a really serious issue. So we go through if you are going to go back, can you go back part time? Can you look at a job that suits your abilities, etc. So it’s like coaching. It’s a change in
what you are expecting yourself to do and you can realistically do. Because burnout will affect whether you complete university, whether you progress in your career as you would like to do that. And on your curriculum, are periods of three or four months when you did nothing. What were you doing? Were you in prison? No, I need you to recover, et cetera. So it’s also going through how to explain autism to
the boss and say, you don’t have to use the A word. can say, I’m the sort of person who is very appeasing and wants to please people. And I don’t have the assertiveness to say, I really can’t do that at the moment. How can you develop those skills? So as a psychologist, it’s looking at what are the things that drain you and what are the things you can do to survive?
Dr. Jeremy Sharp (54:50)
Yeah, yeah, I really like that. I know we could talk about this for a long time, but I think that’s a great summary and intro just to how to think about autistic burnout and some intervention. get the bonus of
Dr. Tony Attwood (55:03)
Okay, to certainly say generally, I’m now going to go through a clear commercial break, because what I want to say is with my colleague, Michelle Garnett, we have developed what’s called Atwood and Garnett events, www.atwoodandgarnettevents. have about 30 webinars that go through everything that I’ve talked about. We do a masterclass on the diagnosis of adults. We did that in Melbourne in
February, early March, we did a whole day on the diagnosis of autistic adults. So if you want to know more, you can have six hours of it rather than two to three minutes.
Dr. Jeremy Sharp (55:44)
that’s great. That’s great. Yeah, we’ll definitely make sure and put that in the show notes so that folks can access it. Yes.
Dr. Tony Attwood (55:49)
yeah, we recently did one on aging. We’ve done at least three on PDA, introduction, going deeper, et cetera. So if you want to know more, people will be saying, that was interesting. I like the conceptualization and the approach there. There is more that you can find.
Dr. Jeremy Sharp (56:10)
That’s great. Yeah, I think we’re always looking for more info in this realm. you have such a depth of knowledge that will be valuable for many folks, many more folks, it sounds like.
Dr. Tony Attwood (56:20)
Well, it gives a lot of life satisfaction.
I did more than I could have hoped for. And it allows me to feel that I have been of benefit to so many people. It’s lovely to reach wisdom. I don’t like getting old and all the body changes of arthritis and all those sorts of things. intellectually, personally, I enjoy the wisdom.
Dr. Jeremy Sharp (56:42)
That’s a really nice way to put it. Yeah. Yeah. So maybe we start to close then. mean, I would love to hear, is there anything next for you? Anything exciting on the horizon, either for you personally or in the field that you see coming up, know, research or areas that are developing?
Dr. Tony Attwood (56:59)
OK, I mean, what I haven’t mentioned, but I’m prepared to announce here, is that I have an autistic son and two autistic grandchildren. And my autistic son, with horrendous anxiety, found the solution was drugs. And he’s been a drug addict for over 20 years. He still lives with us. And if I had a time machine, I would go back to when he was younger and encourage strategies for emotion.
Dr. Jeremy Sharp (57:06)
Hmm
Dr. Tony Attwood (57:28)
regulation, the anxiety, so he didn’t have to use drugs. And it’s been, his life has been…
His quality of life is of great concern. But with our two grandchildren, who are 12 and eight years old, the future is much better. It’s a granddaughter, and it is knowing the problems and helping her with girl friendship and all the bitchiness and the meanness. Yeah, and our autistic grandson, who is a phenomenal
Lego and Minecraft expert and so on.
Dr. Jeremy Sharp (58:03)
that’s awesome. That’s so good to hear. Yeah. Yeah. And I think, I mean, a lot of us can probably connect with that. You know, it’s what do they say? Like you’re only as happy as your least happy kid. And, you know, any of us who have kids and have seen them struggle at any point, you know, that really hits home. Like you said.
Dr. Tony Attwood (58:19)
It does. So in other words, my knowledge is not just professional, personal and family.
Dr. Jeremy Sharp (58:26)
Yeah, it adds another layer that is really meaningful. Yeah, I appreciate you sharing.
Dr. Tony Attwood (58:32)
Okay, thanks Jeremy.
Dr. Jeremy Sharp (59:18)
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