A glimpse into autism expert Francesca Happé’s research on autistic women and girls

By Paul Karwatsky

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 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, I sat down with her to discuss the latest advancements and challenges in autism research. 

This Q&A is part of a larger article that delves into Happé’s career trajectory and the advancements in autism research and knowledge spanning her career. The following article has been adapted and condensed for Inspirations’ purposes. The whole inter- view can be found by visiting www.summit-scert.com/news and clicking on “Urging a Deeper Dive...” 

Interviewer Paul Karwatsky (PK): 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 Happé: 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 the one 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. 

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. 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 it’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. 

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. We think 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 socialization 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. 

PK: What are some of the greatest challenges that girls face, but particularly womenas they grow into adulthood who are on the spectrum; what are some of the main challenges they face right now? 

Francesca Happé: Everyone is 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, [they] 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. 

If you have an abusive partner who tells you, “This is what everyone does 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; people who will accept them but maybe also abuse them. But it’s also true that autistic men 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. 

Dr. Francesca Happé was to be the keynote speaker at the SCERT Conference on Neurodevelopmental Conditions on November 15, an event hosted by the Summit Centre for Education, Research, and Training (SCERT), a division of Summit School in Montreal. Her talk was about the latest research in autism, with a special emphasis on women and girls. 

Paul Karwatsky is a former CTV News anchor and parent of two children on the autism spectrum.