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All Of It with Alison Stewart
Why is it so Difficult to Diagnose Women with Autism?
00:22:01
Women with autism have been consistently un-diagnosed and under-researched.
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- [00:01]
Alison Stewart
With the Chase Inc. Business Cash Card, you can earn up to 5% cash back on business essentials so your business can go from here to possible Chase for business. Make more what's Yours cards issued by JPMorgan Chase bank and a member FDIC subject to credit approval terms apply. Listener Supported WNYC Studios this is welcome to all of it on wnyc. I'm Alison Stewart. Coming up next Tuesday we are hosting a listening party live with the team from Broadway's Hell's Kitchen and you can be in the audience. Actors and creative team members will join us in the green space to perform songs from the hit show and discuss what goes on to putting it on six days a week. Think of it as a Broadway remix in person and for free and all broadcast live on the air. That's Tuesday, April 15th at in the Green Space downstairs. For more info and to get your Tickets, go to wnyc.org events that's in the future. Now let's stay in the present. This hour we'll be talking with author Leila Lalami and Debbie Taylor Kerman, the artist. But let's get this started with neuroscientist Gina Repon. In her latest book, Cognitive neuroscientist Gina Rippon writes in nearly every autism related clinical manual, research paper, website and mainstream media opinion piece there will be an assertion that autism is four times and it is almost always four times common in boys than girls. However, she explains why women with autism have been consistently undiagnosed and under researched. The book is titled off the Spectrum why the Science of Autism has Failed Women and Girls. The book is outlined in two parts. The first breaks down the why, reflecting on how clinicians and psychologists don't include women and girls and the wake up calls from undetected women. The second part focuses on how the male spotlight on autism shapes research and how scientists are just now unearthing new information. Off the Spectrum is out now. Joining us to discuss this is Gina Rippon. She's an emeritus professor of Cognitive neuroimaging at the Aston Brain center and Aston University in the uk. She's the author of several books including the Gendered Brain as well as international expert on brain imaging techniques. It is a pleasure to speak with you Gina.
- [02:39]
Gina Rippon
A pleasure to be with you as well.
- [02:41]
Alison Stewart
Listeners, are you a woman that has been diagnosed with autism? What made you get tested? Tell us what assumption you've heard about people with autism. How did that affect you? Our phone lines are open to you. 2124-3396-9221-2433, wnyc. Are you the parent of a young girl or teen with autism? What resources have you found? Give us a call you'd like to hear your stories. 2124-3396-9221-2433-WNYC. Gina, why did you want to write a book about autism?
- [03:14]
Gina Rippon
Well, I've been an autism researcher for the last two decades or so, but alongside that I'd also become very interested in the story behind the assertion that males and females have different brains. And one of the areas where it is claimed that this is evident is when you look at autism. Because the picture, the clinical world, and in fact the public world have of autism is that it is a male problem. And if you stop somebody and ask them what their stereotype of an autistic person is, it's almost invariably a nerdy interested in very weird statistics, for example, rather socially awkward loner, but also also a nerdy loner male. So we all have a big picture that autistic people are characteristically male.
- [04:09]
Alison Stewart
Well, what did your research determine?
- [04:12]
Gina Rippon
Well, in fact, if you, if you look at the statistics up to quite recently, there was a really good reason for that, but it was a kind of self fulfilling prophecy because effectively people were looking at those children because it is a neurodevelopmental disorder which is lifelong, but it was identified early in children. It was the boys who were being spotted because they had much more kind of overt, overtly atypical behavior. And so when they started putting together diagnostic schedules to see if they could try and make more consistent what clinicians were looking at, they used the behavior of the boys, people who'd already been diagnosed, who were boys. So gradually the picture emerged of this is what autism is like. And it was actually the autism that was being presented in boys. And there were a few girls who got diagnosed, but almost characteristically because they behaved like a characteristically autistic boy. And therefore the figures accumulated and eventually people were saying there are very few females and maybe there's some kind of biological protective effect. You know, maybe something about female biology prevents them presenting as autistic, which is quite unusual because normally female biology gets a pretty bad rap.
- [05:36]
Alison Stewart
So who was the first person or who were the first people to point out there's an error here?
- [05:43]
Gina Rippon
Well, actually, to be fair, I think it was actually autistic women themselves who really kind of found their voice. There was a wave of powerful personal testimonies in the last decade or so of late diagnosed women saying, I'm in my 30s, 40s, I've only just been diagnosed with autism. In some cases, the context was they had an autistic child. And when they were talking to the clinician about, you know, what autism looked like, they said, but that's exactly how I am. At which point the clinician would say, oh, maybe you're autistic. And what they were saying was they'd struggled all their lives. It wasn't as though this was, you know, they had otherwise perfectly well balanced lives. And suddenly somebody said you might be autistic. They had all sorts of problems throughout their lives, even from, you know, quite young, quite young girls and nobody had spotted they were autistic. If parents expressed concern, they were told, oh, you know, she's just shy. Only boys get autism. Or if they got as far as the clinician, they found that the diagnostic schedules were actually shaped to spot autism in boys. And therefore the girls in inverted commas failed the autism test. And that of course then fed through to people like me who were doing research into autistic brains. And you recruit autistic participants to your studies and you find that almost all of them are boys or men because there was this sort of male spotlight problem which fed into the statistics. So only boys were being spotted. And it turned out that there's a large number of women who were expressing themselves in these personal testimonies who have suffered all their lives. But one of the reasons they've suffered is because they are aware that they experience the world differently, but they feel almost ashamed of it and try and hide it. So they camouflage the fact that they are different and they do everything they can to try and work out how to fit in with other people. And it was once that became evident and people started trying to find that kind of behavior in some of the women they were treating who hadn't been diagnosed with autism. It then became clear that there was a big group of people who'd completely flown beneath the radar.
- [08:07]
Alison Stewart
Let's take a few calls. Let's talk to Marjorie who is calling in from White Plains. Hi Marjorie, thank you so much for making the time to call all of it. You are on the air.
- [08:19]
Marjorie
Hi. I'm a mother of a 28 year old woman with autism. She was diagnosed at about 2, but it took a year. A pediatrician kept dismissing it. I think because she wasn't a boy most of her education, when she was in kind of self contained environment, she was usually the only girl. And then even as she grew up, the social activities for teens and young adults, she was frequently the only female there, which made her not want to participate. So eventually I started an organization called yes she can, which helps young women with autism develop job skills in a safe place where the women can be themselves. They present differently than the way men do. Their needs and interests are different. And a number of the young women who have come to the program, unlike my daughter, weren't diagnosed until they were a little older. And they all have issues about being autistic. So that's been our experience.
- [09:33]
Alison Stewart
Marjorie, thank you so much for sharing that with us. Gina, I want to get you to respond to Marjorie. She said so many of the things that are in your book, Late Diagnosis, how her daughter felt the way she was being treated was differently, or her parents realized it was different. What are some of the differences in how women and girls with autism navigate the world versus men and boys?
- [09:57]
Gina Rippon
Well, one of the key characteristics that is now emerging is that the traditional picture of autism is of very aloof individuals who didn't appear to be concerned about social contact. One of the early people who spoke about autism, Leo Kanner, said that they never formed any effective bond with their families, their parents. They didn't seem to be friendly with any of their peers, so they were very much alone and withdrawn. Differences with women with autism on the whole is that they are very, very anxious not to be alone. They really, really want to belong. And a lot of their activities and anxieties are associated with trying to work out how to be social. And they appear to lack a sort of social instinct that we instinctively know how to interact with other people, how to predict how they're going to behave towards us and other people. And they seem to appear to lack that instinct, but they're desperate to find out how they can belong. And I think that's where the difference lies, characteristically, in this group of people.
- [11:12]
Alison Stewart
Is that what you were talking about when you were talking about camouflaging or masking?
- [11:17]
Gina Rippon
Yes, exactly that. And that this was something which emerged rather slowly over time. There wasn't observation in the 1980s, when the autism diagnosis became much more inclusive, but there were still relatively fewer girls than women. And the only ones who were being diagnosed were very much like the picture of autistic boys and men. And Lorna Wing, who was a UK psychiatrist, who was one of the leading lights in this change in diagnosis, noticed that there weren't so many girls and said, perhaps almost in passing, perhaps they're just better at camouflaging their difficulties so they're not spotted as having a problem. And there was also in the 1980s, a suggestion that the kind of gendered socialization of girls to be polite, to fit in, to be friendly, not to make a fuss also contributed to this invisibility cloak, if you like, which seemed to cover these women. But the idea was that it's also so they were trying to hide the fact that they were different because they wanted to fit in. But it's also incredibly stressful because it's a lifelong strategy, a lifelong struggle for them to hope desperately that they won't be spotted. So they try and blend in with other people. They work out how the popular girls in their class behave and they copy their, even their movements and their mannerisms. They go home and they write a little script and they practice that in front of a mirror. So they're desperately trying to blend in or mask, to pretend they're somebody else who perhaps is the class clown or something. But all they're doing all the time is desperately trying to hide the fact that they are different from the people they want to belong to.
- [13:10]
Alison Stewart
You are listening to all of it. We're discussing a new book from cognitive neuroscientist Gina Rippon explaining why women with autism have been consistently undiagnosed and under researched. She's written a book, a new book called off the Spectrum. We would like to hear from you. Have you been diagnosed with autism? Are you a woman? When did you realize the world felt a little different to you? Maybe you're the parent of a young girl or a teen with autism. We want to know about what resources you found or your experience. 2124-3396-9221-2433. WNYC Carol is calling us from Franklin, New J. Thank you for making the time to call WNYC. You are on the air.
- [13:55]
Carol
You're welcome. I heard about the book at the beginning of your program and I was immediately fascinated. I am a 71 year old white female, working class background and they did not have the sort of psychiatric services in the 1950s and 60s that would permit most psych diagnoses. And certainly I didn't fit the model of being autistic or Asperger's or whatever. I, I was outgoing, I was friendly, I tried to be socially interactive but I usually failed miserably. And I ended up being best friends with two other outcasts from the my school community. I don't know that they had Asperger's or autism or not. I tend to doubt it. But we were odd ducks. And being diagnosed at age 52, approximately. So that was the early thoughts. Yeah, we, I missed a lot of the training and retraining that would have been possible had I been in grammar school, high school, even college. And it shed an amazing light onto all the difficulties I've had interacting with management on the job. I always did my job impeccably. Nobody could fault me for doing something substandard. However, I never met the expectations of my supervisors.
- [16:11]
Alison Stewart
Yeah, you know, Carol, I'm gonna jump in there. Thank you so much, so much for calling in and sharing your story. I wanna get back to Gina. First of all, did you have any response to Carol, anything you heard in her answer?
- [16:25]
Gina Rippon
Yes. Thank you very much Carol for sharing that all too common story. Very neatly summed up exactly the sort of experiences that other people have reported. In particular, you know, a late diagnosis at the age of 52. First of all, relief that you've suddenly got some kind of explanation for why life has been so difficult for you to that point, but then regret that if only somebody had spotted this earlier, your life would have taken a different path. And you have absolutely summed up the sort of experiences that late diagnosed women are reporting.
- [17:06]
Alison Stewart
There's no biomarker for autism, correct?
- [17:10]
Gina Rippon
That's absolutely correct. And well, for any, any of the so called disorders which are included in the diagnostic and statistical manuals. Effectively somebody asks you questions about how you experience life, or they ask your parents questions about oddities of your behavior, etc. But there's no one measure where you could put somebody in a scanner or do a genetic analysis or a neuroendocrine analysis which will definitively say yes, this person is autistic, or perhaps more importantly, this person is not autistic.
- [17:48]
Alison Stewart
When do these tests usually happen for people?
- [17:54]
Gina Rippon
That's a very good question, particularly in the context usually if the behavior is evident, we're looking in the first five years of life. So there's already some kind of problematic behavior that's on average. And that's on average for boys, girls. Boys are 10 times more likely to be referred for any kind of autism assessment than girls. And when girls do get referred for assessment, boys are twice as likely to actually receive a diagnosis. Which is, if you like, another example of the male spotlight problem. Girls very often fly beneath the radar, very often until adolescence and change to secondary school or high school, when if they've got a carefully constructed scaffolding, camouflaging techniques is no longer fit for purpose because life has suddenly become much more complicated and social pressures are much more difficult to navigate. And that's when other problems may emerge, such as eating disorders or self harm. But effectively the distress being expressed is associated with their experiences of being autistic. But again, there is no biomarker for that. It's people knowing what to look for and how to ask for help.
- [19:18]
Alison Stewart
Let's talk to Barbara from Merrick. Barbara, thank you so much for calling in. What did you want to weigh in on?
- [19:26]
Marjorie
I'm a therapist and I work with families and a lot of it, what hasn't been mentioned is that the kind of behavior that girls exhibit who are autistic is feminine and accepted as feminine behavior, especially when they're young. And parents don't want to admit that they have autistic children, boys or girls, because they feel like it's their fault. And that's been a big problem for me as a diagnostician because until the girls show any kind of deviant behavior, like she mentioned eating disorders or drugs, they're not diagnosed because then it's not acceptable feminine behavior.
- [20:15]
Alison Stewart
Thank you for weighing in. This text says I am a late identified neurodivergent woman who has masked my traits for almost 49 years. There are so many of us and have been incredibly grateful to find resources like the Neurodiversity podcast. Those forums are enormously validating. That said, I still mourn my younger self and all the opportunities I've missed. Do you have any resources that you can suggest for women who are listening to this or parents of young girls who are listening to this?
- [20:46]
Gina Rippon
Yes, indeed. And I think one of the things, one of the good things about the Internet is it has made available.
- [20:55]
Alison Stewart
A.
- [20:56]
Gina Rippon
Huge cache of resources, if you like. So in the UK we have Autistica and the National Autistic Society and you have equivalent websites and advice centers in the US and very often they've been very well designed. So they present case studies that people where people can recognize themselves and they also have groups where people who have been, for example, late diagnosed can get together and exchange histories. And this has proved to be very, very helpful, particularly for late diagnosed women who've been struggling all their lives. So I think we're moving more towards acknowledging that there's a large group of organizations, autistic individuals who've so far been ignored. But there are resources. And in fact, at the, at the end of my book, I do list my favorite sort of personal experience, lived experience books and say these are, these are very helpful and there's some very good ones for young adolescent girls as well so that they can they can find somebody to relate to and realize that their difficulties and differences are shared by other people.
- [22:09]
Alison Stewart
The name of the book is off the Spectrum While the Science of Autism has Failed women and girls. It is by Gina Rippon. Thank you so much for joining us.
- [22:19]
Gina Rippon
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- [22:58]
Alison Stewart
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- [23:07]
Gina Rippon
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