Dr. Francesca Happé, a renowned expert in the field of autism research, has made significant contributions to our understanding of autism spectrum disorders through her role as a Professor of Cognitive Neuroscience at King’s College London. With a career dedicated to the study of the cognitive and social challenges associated with autism, Dr. Happé has been instrumental in shaping both academic thought and public policy. Recently, she sat down with Paul Karwatsky, former CTV News anchor turned autism advocate and parent, to discuss the latest advancements and challenges in autism research.
Interviewer (Paul Karwatsky): So first off, maybe just tell us a bit about your trajectory in research. How did you end up dedicating your life to autism research?
Francesca Happe: When I started in this area, I didn't have a family connection with autism. I was just fascinated by reading about autism and hearing about it as an undergraduate.
I was very lucky to have the chance to work as an intern with Neil O'Connor and Beatie Hermelin, who were the sort of founding figures of autism UK. That really introduced me to autism. And it was so different from what I'd read about in the books. I really became fascinated and I was lucky enough to do a PhD with Uta Frith and then spend the last 30 more years trying to understand autism just a little bit better and trying to make life for autistic people as good as it can be.
Interviewer: What was that disconnect in terms of what your understanding was when entering the field for the first time compared to what it then became?
Francesca Happe: So I guess that I had lectures about autism and I've read about autism, but when in those days, that was in the 1980s, the late 80s, and I was going into special schools or places where autistic adults were living. And the phenotype of autism in those days was really quite a striking one.
Most children had little language, and most adults with an autism diagnosis would be very dependent on other people. So it wasn't as wide a spectrum as we see today. And so I guess that I was just surprised going into, say, a special school for autistic children, all the autistic children moving around, playing in their own ways.
Making noises and but not necessarily playing together, not necessarily interacting together. So a very strange kind of playground to walk into in a sense when you know all you read about on the page was, you know, maybe Kanner's description of a child who has an amazing memory for something, but to actually see, I think, partly the sensory distress that you can often see in a crowded environment.
And partly the difficulty of communication of the children in those days. Now, today, of course, a lot of my work is with adults who are extremely able and intellectually able. They can tell me everything about their experience and it's wonderful that they can share that. But the description of autism and the width of the spectrum has changed a lot over the years.
Interviewer: So from that moment that you entered and experienced autism firsthand for the first time, to now, if you could just sort of explain your career trajectory, how did you go from that first experience to then working with higher functioning individuals and really studying that demographic a little more?
Francesca Happe: We work with individuals across the whole autism spectrum now, and across the age range as well. In recent years, I became much more interested in autism in old age, for the simple reason that there wasn't any research on that at all. In fact, what happened was that I was working on the DSM 5, the new diagnostic manual, and we were tasked to write about how each diagnosis looks different at different phases of life.
And I thought, well, I'll go and read up about old age. I've never worked on that. I'll go find out what's written about autism in old age. And there wasn't anything. There was nothing at all. And at the same time, by coincidence, my mom, who was around 70 at the time, had a bad fall and she broke her leg and she was in hospital here.
And I was visiting her and just struck by, we don't really respect all the older people in this culture. They're not treated very nicely. Hospital is a horrible environment for anybody, but would be a particularly horrible environment if you were autistic.
I was thinking, because my mom was in this noisy place, the worst place to get well really, noisy and bright and so on.And I couldn't help but think, wow, if you were autistic here, that would really be hell. And the other part was that those older people on that ward were really reliant on having family as advocates, somebody to go and say to a nurse, could you move her somewhere quieter? So again, I was thinking, well, a lot of autistic people don't have a lot of advocates for them in their lives, especially as they get older and their parents may not be around anymore.
So that really set me on a bit of a mission to try and do some research and raise awareness about autism in old age. So it's been a mixture of following the research trends and seeing where the gaps are and then personal influences in my life that have made me focus on different things, different aspects of autism, but the continuous thread throughout the last 30 plus years has been autism.
Interviewer: Your research related to older individuals with autism. What has been your focus in that sense?
Francesca Happe: Well, because there was no literature in that area at all, we've looked at a range of things. We've done studies comparing, for example, mental health in older and younger adults on the autism spectrum.
We've also taken a trait-wise approach. So we know from some research here in the UK with doctor databases that an estimated nine out of 10 autistic adults over the age of 50 are undiagnosed. So over the age of 50, the vast majority of people who are autistic do not have an autism diagnosis. So we can't just study autism in old age by recruiting people with a diagnosis.
We need to also go out into older samples and measure autistic traits to look at those people who aren't diagnosed, but probably would warrant a diagnosis. And we've done that in a very, very large study of healthy aging, that happens in this country called Protect. And in that, we've looked at a myriad of things.
We've looked at mental health and physical health. We've looked at sleep. We've looked at adverse life events, and trauma, and symptoms of PTSD, and we've looked at cognition, so memory and other things, and at the moment that's cross-sectional work, so we can just look at whether the age is affecting people with high autistic traits differently from people without.
But in the longer term, we'll be able to look longitudinally because those participants have. Most of them come back year after year onto the system, done the same cognitive tests, reported again about sleep and all these other things. So we've got really quite a broad range of areas where we're looking at autism and aging.
Interviewer: What is the value of expanding the spectrum? It could be a very layman question, but why is that? To recognize those that might be getting through life all right, despite not having a diagnosis, what is the importance of expanding the breadth of our diagnostic net?
Francesca Happe: Yeah, so it's really about people that we're missing. It's not that I'm trying to redefine autism to make it broad, but in old age, you know, the 1 percent say of people who as children and young adults are autistic, they don't just disappear when they get older. So, the other area that we really thought that there was an under diagnosis, historically has been for women and girls, which is.
What I'll be talking about when I come to Montreal. So then why were we worried? Well, we knew that autism was diagnosed later on average in women and girls than in boys. We knew that those girls who were getting diagnosed often had something else that was acting as a red flag. So maybe they were also hyperactive or had ADHD.
That wasn't so true for the boys. And we know that diagnosis really matters. So we know that later diagnosis is at least associated with poorer mental health. And autistic people themselves tell us when they get their diagnosis, it can be a moment of sadness to think about time lost or misunderstood or how others have misunderstood them, but i
t's often an important moment of revelation and self-understanding.
And of course, if you understand yourself and if other people can understand you better, you're going to have a better life.
So, I think understanding that autism can look different in different groups, and that we, all of us, often carry biases. So the under recognition of autism in women and girls was a lot about the unconscious biases we carry.
We'll look at a boy who's struggling at school socially, and we'll think, could this be autism? But we'll look at a girl who's struggling socially, we'll think, oh, it's social anxiety, or she's shy. So we don't come with a fair lens. And we also have stereotypes about autism. So we think, well, the social difficulties in autism are going to show up by somebody being socially aloof.
But actually, they may be socially very clingy. And that's something that's sometimes seen in autistic girls, also autistic boys. But it's not the stereotype. of how social can be difficult for autistic people, but it's absolutely there. And it was there from the first descriptions of autism. In fact, we listened to people like Lorna Wing, who was working so long ago, making us aware that there were lots of different ways of being autistic.
Interviewer: What are some of the greatest challenges that girls face, but particularly women as they grow into adulthood who are on the spectrum, what are some of the main challenges they face right now?
Francesca Happe: So everyone's different, of course, and anything that I can say about an autistic woman could also be true for an autistic man. But I think that there's a particular concern that many autistic women may be very vulnerable and may be vulnerable in relationships, for example, maybe have more experiences of domestic or other violence. An autistic friend of mine said to me:
"it's the things that you don't teach that I can't learn."
So if you teach something explicitly, then I'll get it, I know it. But it's all that stuff that neurotypical seems to just know, without anybody ever sitting down and teaching it in school, she doesn't know that stuff. And if you think about some of the things that happen in an intimate relationship, how do we know what's normal?
How do we know what's okay and what's not okay? Maybe by chatting with friends. You definitely wouldn't want to base it on what you see on the TV or in films. So if you have an abusive partner who tells you, Oh, no, this is what everyone does in their relationship. This is how everyone gets treated in their relationship.
And you don't have any other benchmarks, you maybe don't have some close friends to talk to about it, then you're really vulnerable in that way. And I've also met autistic women who, particularly before their diagnosis, because they feel different, or because social situations can feel very stressful, they may use alcohol or drugs to try and relax and cope, they may float to the margins of society and hang out with people who are, you know, drug users or who are kind of out of it.
who will accept them, but maybe also abuse them. But it's also true that autistic men, of course, and boys can be very vulnerable to exploitation. But in every case, I think a diagnosis is worth having. If your autistic traits are causing you difficulties, then a diagnosis will help you and other people to understand the ways in which you might be struggling and what accommodations can be made as well.
We just did a piece of research around autistic people's visual sensory experiences, and that was really about what can we find out so that we can make the right accommodations. And lots of people would think about fluorescent lights. People don't know, often autistic people don't like flickering fluorescent lights, but people were also telling us that sunlight.
could be extremely painful, and it stopped them going and doing things they wanted to do, or they felt that people would think they were weird if they were wearing sunglasses, maybe even inside, or on a day that didn't seem to others to be very bright. But they also told us things we didn't know, like, some supermarkets, are much, much worse than others for autistic people, not to do with how many people are in there, not to do with crowds, but to do with visual crowding.
So signs and the way that shelves are stacked and the way that, that things are displayed and signs are put up can be really overwhelming because of the amount of kind of input and visual information and actually make somebody feel sick. So that space then isn't really accessible for them. So, we're trying to find out.
to try and make things better. And that is why I think quite a lot of our research is with people who can tell us about their experiences, but we really want to not neglect the part of the autism spectrum where they can't tell us in their own words what's going on with them. And we've tried to do that in the past.
The pandemic, of course, made that much harder because we were very reliant on online studies, but we're really trying to recognize and address the way that research in autism has rather neglected these days, those children and adults who can't take part in speaking in research, for example.
Interviewer: Where are we now, do you think, generally, as far as our understanding of autism goes?
Francesca Happe: You know, if you had to put a percentage on how much we know about autism and how much there remains to figure out about it, where do we stand right now, historically, on that?
Well, I couldn't possibly put a percentage on it because that would imply I knew what the total was going to be. I can say for myself that when I started out in 1988, I really thought that if I could get all the papers that are currently being written about autism out on the table in front of me, and they would have been in those days physical papers, that I was going to make some big breakthrough, I would put it all together and come up with some big understanding.
And that was hopelessly naive, of course, but I could read everything that had been written. It was only about 2,000 articles at that time. Now, you'd be lucky if you could read everything in a single year. There are over 2,000 articles a year published on autism. So it's absolutely exploded as a field.
And from going thinking I was going to make some big understanding, I now realize just how little I know about autism. I think we have a much better grasp of some aspects, so we know, unlike in the 60s, we know that autism isn't caused by refrigerator parenting. We know that autism is largely genetic.
We know that for some, for few autistic people, that's about rare genes of a large effect, but for most autistic people, the genetics of autism is just like the genetics of our height. It's the product of hundreds and hundreds of very common genetic variants that we all carry, and it's just the combination and the number that puts one person over the boundary into autism and the other person just below the boundary with high autistic traits.
I don't think we have a good understanding of what's differently wired in the brain for autistic people. I think one of the biggest changes has been, at least in this country, a change from a medical model of saying, well, there's something wrong with this child or was adult to a social model where we say this person is different, not lesser.
not broken, not wrong or faulty, but different. And the way that they're different from the majority of people causes them some disability because the world is set up for neurotypical people and neurodivergent people, including autistic people, find that difficult. So the onus is on us to make some accommodations and to understand that process of translation between the autistic mind and the neurotypical mind.
That's been a big change, I think, over the years, and that's been good progress, but still a fight to be fought in many places.
Interviewer: Yeah, it's something, it's a transition that I'm grateful for, for sure. I realize we're running out of time. Last question though, because SCERT, SCERT is sort of, it unites researchers, parents, educators, and the neurodiverse, right?
But a lot of it is about the bridge between research and practical application. So you're talking about how research has evolved. Obviously practical application of that research is not quite following it as much as it should. Obviously a big part of this conference is about education.
So just last question, what are some of the gulfs in that respect between research and practical education and practical application as it pertains to both treatment and education of autistic children and young adults? Can you comment on that?
Francesca Happe: So I guess, again, in this country, one of the big problems is that we have good diagnostic systems, but the waiting list, the wait time to get a diagnosis is horrendous.
So at least in this country, you know, children are waiting years while they should be getting extra help in education and tailored education for their autism. Adults are waiting years before they get a diagnosis that might help them and others to understand their needs. So that's a big gulf between practice and research.
In terms of education, again, in this country, we all recognize that medicine should be evidence-based, but people don't necessarily think that education should also be evidence-based. So we need to test what we're doing in education because education is the biggest intervention that we have.
for all our young people, not just autistic young people, but we often don't actually test whether what we think works, works. And I think even in autism intervention, sometimes the standard of evidence isn't as high as, as you know, I think our children deserve. So there's some areas, but then there are all sorts of areas where research is lacking as well.
So I think we don't understand well, for example, motor difficulties in autism, why some autistic people have catatonia or kind of freeze with movement or might have inertia when they have a meltdown, feel like they can't. They can't actually act. We don't really understand autistic burnout. And, you know, I think there are lots of other areas to where, where research needs to do more.
Interviewer: Okay. Thank you very much. I'll let you prepare for your next meeting. It's interesting. Last point. That's exactly what SCERT is trying to become right now. The long term idea or the medium term idea is to convert SCERT into a research center embedded in the school that really researches educational best practices.
So hopefully we can do that in Canada at least. Thank you so much.
Francesca Happe: Bye for now. Thank you so much.
Dr. Francesca Happé will be the keynote speaker at the SCERT Conference on Neurodevelopmental Conditions on November 15th. Her talk will focus on the latest research in autism, particularly concerning women and girls with the condition.
Comments