EVERY SPOKEN WORD
40 min read · 7,844 words- 0:00 – 1:19
Trailer
- GRGina Rippon
If you're female, adolescent, and autistic, going to secondary school, hitting adolescence, I call it the perfect storm. You're not just somebody's child or in somebody's classroom, you're supposed to be somebody who's heading towards your own individual identity.
- APAlex Partridge
Mm. What is the difference between an autistic person who has an insight into their differences and intentionally tries to change they are to fit in and someone who doesn't?
- GRGina Rippon
The person who feels they have to camouflage, they might say, "Well, that's what I've done all my life." And so they kind of feel the difficulties they have might be worth the struggles they have.
- APAlex Partridge
If a woman does have ADHD and also autism, but she doesn't know that, could the ADHD make her too talkative, spontaneous, impulsive to the point where she doesn't fit the stereotype of-
- GRGina Rippon
Yeah
- APAlex Partridge
... autism, and therefore she gets missed?
- GRGina Rippon
Talking to women who have both, they will say-
- APAlex Partridge
Can I have just a second of your time? If this podcast has helped you understand your brain or made you feel less alone, can you do me one favor? Can you hit the subscribe button? And I'll repay the favor by continuing to book the best and most exclusive conversations on this topic. Please enjoy the episode, and always remember, you're not broken, just different, and you have always been enough. [upbeat music] Professor Gina Rippon, welcome back.
- GRGina Rippon
Thank you very much for having me back.
- APAlex Partridge
We're gonna jump straight
- 1:19 – 3:25
How Autism Can Be Hidden — Even From Yourself
- APAlex Partridge
in. How can a autistic woman become so good at hiding their autism that even they can't see it?
- GRGina Rippon
Well, I think bearing in mind that the evidence suggests that camouflaging, um, or masking, or accommodating different ways of disguising your autism starts very early, so by [laughs] 20 years of practice effectively. Um, and if you talk to quite young girls, they will... I talked to one girl once. We were sitting looking at a playground through the window, and she was pointing to the group of popular girls and pointing out, um, how they laughed. You know, they... She'd been watching how-- which ones threw their heads back, um, and whether one, one of them touched the other one, and so very, very socially astute, um, at a surface level. Uh, and the idea being that somehow if I can learn to behave like that, they won't notice that I'm different. They won't call me weird or-
- APAlex Partridge
Mm
- GRGina Rippon
... or other or whatever. So years of experience. Um, and very often, even things like watching television programs or reading books, writing scripts, um, that you then literally practice in front of the mirror, um, it becomes quite all-encompassing. Um, and then, of course, to not have those scripts with you, but to have to play them out is very exhausting.
- APAlex Partridge
Yes. Gosh, it sounds totally tiresome. [laughs]
- GRGina Rippon
Yes. But also, y- as you said, how, how they don't even know they're doing it because-
- APAlex Partridge
Mm
- GRGina Rippon
... of course, it's not something you talk about. So you-- some people are really surprised. You know, doesn't everybody do that? [laughs] Um, and, and so it's quite a revelation when it becomes clear that they're masking the difficulties they've had. Somebody needs to ask them the right questions in order to find out what they're doing.
- APAlex Partridge
Well, th- this is where it gets really interesting 'cause I think there's many people gonna be listening who relate to that, but they might be wondering, "Is
- 3:25 – 5:10
Are You Socialising… or Performing?
- APAlex Partridge
that me?" Uh, how does someone tell the difference or know if they are someone who intuitively, intellectually understands socializing versus them just being a brilliant performer?
- GRGina Rippon
Well, I think the difference between intuitively and intellectually is interesting 'cause intuitively implies that there is some kind of automatic process which allows our brains to understand other people. I mean, there's a lot of that in, in the autism world, talking about mind reading, in inverted commas, for example. So not only understanding how you feel about a situation, but how the other person you're talking to, the other people you're working with feel, even to the extent that you don't ask them, but you work out from what you know about them perhaps or what you know they believe or their own experiences or their facial expressions. So you come to understand other people, but it is automatic.
- APAlex Partridge
Mm.
- GRGina Rippon
Um, people who don't have that innate, if it is, skill then work on it intellectually. Um, and it is literally decoding, uh, the, the sort of physical events in the world, looking at people's expressions. I mean, it's kind of characterized a bit with autistic, uh, children who find it very difficult to understand emotions and how to respond, including their own. Um, and there's... It may be anecdotal, but, you know, there's evidence that if you teach a child who's finding it difficult to understand other people, um, you, you know, if the corners of their mouth are going up, that's a smile, and that means they're happy.
- APAlex Partridge
Right.
- GRGina Rippon
Um, and you have to teach them that, and they have to remember that. [laughs]
- APAlex Partridge
Yes.
- 5:10 – 7:20
Masking Can Start Earlier Than You Think
- APAlex Partridge
[laughs] How young does masking start? And what does a high-masking autistic girl look like?
- GRGina Rippon
Uh, a young girl, the, the work that's coming out quite recently is suggesting that this camouflaging or masking starts very early, five, six, perhaps when you first go to primary school and you're, uh, i- in a, a sort of, um, compulsorily social situation. Um, so I, I think that's how, how early it starts, and of course, it's, it's much more simple at that stage, but it comes-
- APAlex Partridge
Mm
- GRGina Rippon
... much more sophisticated as they get older.
- APAlex Partridge
And if there is an autistic girl, maybe she has plenty of friends, maybe she gets good grades, maybe she is perfectly behaved. Can these- Manifestations, can these appearances, can that be a reason why she is missed, because she doesn't perhaps fit some kind of stereotypical image that society has?
- GRGina Rippon
Absolutely. I mean, and one of the realizations once people started actually asking questions about so, why so few autistic girls and women were diagnosed, um, I mean, there's all sorts of suggestions. Maybe they got a biological protective effect. [laughs] And then somebody said, "Well, let's have a look at the diagnosis."
- APAlex Partridge
[laughs]
- GRGina Rippon
Um, and they realized, first of all, the kind of behaviors that were part of the observational schedules or the questions that parents, carers were asked, et cetera, um, were based very much on boys, um, because that was, that was the cohort that they'd been developed on. And so they realized they needed to ask different questions. Um, and that was, you know, more than the yes, no, "Has she got friends?" "Yes." Then you need to ask a deeper question, uh, "Do you think she finds it difficult to make friends? What, what are the friendships like?" You know, are they very intense from her point of view? Does she have one special friend that she's quite demanding of, and then eventually that, because of that, the friendship breaks down? So you need to ask deeper questions. You know, if you just ask, "Has she got friends," the answer could be yes.
- APAlex Partridge
Mm.
- GRGina Rippon
But, but there's more to it
- 7:20 – 9:53
Why Making Friends Can Feel So Hard
- GRGina Rippon
than that.
- APAlex Partridge
And what happens when that girl reaches adolescence? I mean, does, does, d- does social complications make this more murky?
- GRGina Rippon
Ab- absolutely. Absolutely. I mean, I, I call it the perfect storm. If you're female, adolescent, and autistic, um, going to secondary school, hitting adolescence, hitting puberty, it's just a triple whammy. [laughs] Um, in primary school, particularly the structure primary school, things are quite predictable. The social rules are quite well-established. You're in the same class with the same people, with the same teacher. You can build up a, a, a sort of scra- scaffolding, which allows you to keep disguising, or your invisibility cloak, if you like, allows you to disguise the fact-
- APAlex Partridge
Mm
- GRGina Rippon
... that you're really struggling. Um, when you get to secondary school, you know, all bets are off, effectively. And that's very distressing, because if you have been, you know, the child in primary school with friends and, and who's, does well and, um, as a caveat to that, which I, I will come back to. Um, and then you go to secondary school, and all of a sudden there's these little friendship groups which form and then disperse [laughs] you know, possibly within the space of a week. Uh, there's all sorts of, uh, individual identities. You're not just somebody's child or in somebody's classroom. Y- you're supposed to be somebody, uh, who's heading towards your own individual identity.
- APAlex Partridge
Mm.
- GRGina Rippon
And if part of your identity is, has been hiding it [laughs] , then that's quite challenging. Um, and the whole business of adolescence and, and peer, uh, peer group approval, et cetera. Um, the, the, the, uh... I was gonna say something about the child who's, who, who behaves perfectly and always does well. Very often, the story is that that's at school, in primary school, in, in public, and when they go home, that's when they have a complete meltdown.
- APAlex Partridge
Mm.
- GRGina Rippon
They're absolutely exhausted, but they've reached somewhere where hopefully they feel safe. Um, and parents often will say the struggles they have with saying, "I think my daughter is struggling," that school will say, "Oh, no, she's fine. You know, she's very quiet, but she's got friends, and sh- really good homework, et cetera." And the parents say, you know, when she gets home, you know, screams, shouts, head banging, door slamming, shutting herself in a room, et cetera, and clearly very unhappy. And you can see the school thinking, "Well, she's all right at school," so. [laughs]
- APAlex Partridge
Yes. [laughs]
- 9:53 – 11:35
The “Contradictory” Personality Nobody Understands
- APAlex Partridge
That contradiction, Gina, between perhaps how a, a girl or a woman is in one setting, perhaps at a school or later on in life, perhaps the, the office, compared to how she might be behind closed doors, perhaps in a safer environment, what complications could that cause in her personal relationships?
- GRGina Rippon
Ooh, a lot. Um, partly because i- if you're struggling in public, and then you, you might need to withdraw, y- you know, at the end of the day from the workplace or wherever. You, you might just think, "I, just let me get through that door. I just can't cope anymore."
- APAlex Partridge
Mm.
- GRGina Rippon
So you shut yourself off. Um, if there's kind of evening socialization, for example, when you're older, you don't join in, 'cause you are just exhausted. Um, and in order to maintain this sort of surface competence, which allows you to be missed, it's hugely exhausting. And, and when you look at the statistics, the correlation between high levels of camouflaging and high levels of, um, mental illness, distress, uh, depression, anxiety, suicidal ideation, but also physical, uh, problems like this kind of complete freezing when, you know, women report that having coped to a certain point in their lives, they suddenly find they can't get out of bed. They cannot physically move, motivate themselves, because the system is just shut down.
- APAlex Partridge
The concept of camouflaging is fascinating, and I suppose following on from that, to camouflage means that there is some shame that you're trying to hide, you're trying to blend
- 11:35 – 15:25
What Are Autistic Girls Trying to Hide?
- APAlex Partridge
in. What do you think autistic girls are made to feel like they need to hide? What part of them?
- GRGina Rippon
I think the issue very much is with socialization. Girls are expected to be, not to make any trouble, to have friends, to blend in, not to, uh, you know, kick over the traces, et cetera. So there's that additional pressure, um, to be good. But as a whole, the whole human race really wants to belong. We, we know neuroscience has demonstrated the power of social rejection, for example, that the changes in the brain, the changes in behavior, uh, the changes in, in, in psychological wellbeing, which are associated with social rejection. And something about autistic girls means that the effect of social rejection is much more powerful. So they've got this huge drive not to be noticed as different, not, um, not to be called other or weird, to fit in. Um, and those are the people I call the chameleons. [laughs] Um, whereas another type of autism, which I call Kanners, the Kanner type, most of whom are male, um, don't seem to have the concern about belonging or needing to fit in. So of course, they then develop the, the traditionally stereotypical autistic behavior. The aloof loner, doesn't make eye to contact, not interested in other people, abs- has abs- absorbing hobbies which completely exclude other people, et cetera. Um, so I think it affects girls differently, uh, because maybe because of a kind of more powerful biological drive to fit in, which would fit in with some of the evolutionary stories, which I don't necessarily agree with. But in a way, i- if it is the case that there is a more powerful drive in females on average, um, [laughs] um, and a more powerful drive as an autistic female-
- APAlex Partridge
Hmm
- GRGina Rippon
... that social rejection affects you more. That, that's a really profound struggle for anybody.
- APAlex Partridge
Is it hard to camouflage and put on a, a, a version, a character around the people that you feel safest around? Because in many ways they know your real self, and they could pod- probably see through the camouflage.
- GRGina Rippon
That's, that's a great question. Um, and quite a lot of the kind of personal testimonies of, of late diagnosed autistic women address that very issue. Because a lot of the time, particularly with early stages of relationships, they hide their differences because they want the relationship to be successful, and then as it carries on, they find it more and more difficult because they would like to reveal their real self, but they feel the relationship is based on the self they've presented.
- APAlex Partridge
Hmm.
- GRGina Rippon
And it can be very challenging, um, to make a relationship feel safe enough. But very often, if you spend a lot of time with somebody, even if you've become very good at camouflaging, there are hints which sensitive people w- will, will pick up on. Your sensory sensitivities, it's quite hard to hide. Your, your need for routine if, if that's how it presents. Um, your need for things to stay the same. If your relationship involves, for example, moving in with somebody, [laughs] then that almost-
- APAlex Partridge
Hmm
- GRGina Rippon
... invariably, unless they're the same, uh, which is quite interesting, um, the person will see, feel that they're seeing another side-
- APAlex Partridge
Yes
- GRGina Rippon
... to the person.
- 15:25 – 20:58
How Masking Affects Romantic Relationships
- APAlex Partridge
Is there a risk that [laughs] the, the partner of the autistic woman could end up resenting them a little bit? Because they might think, "Well, you're lovely to everyone else, but then you come home and you snap at me." And y- let's just say there's isn't an awareness of autism-
- GRGina Rippon
Yeah, yeah
- APAlex Partridge
... in the relationship. When ... Is, is that, is that a possibility that they could get frustrated at, and feel like they're having a, th- the cold treatment?
- GRGina Rippon
Well, I think that's where po- possibly a g- a good therapist [laughs] might come in or, you know, if, if the autistic woman was brave enough to say to this individual, "I'm really sorry, I have ... Things have to be like this because this is how it affects me." So they feel safe enough-
- APAlex Partridge
Hmm
- GRGina Rippon
... to reveal themselves to that individual, which hopefully will work, but sometimes doesn't. And then of course, the next time that female is in another relationship, she might feel less secure about revealing herself, which of course is even more exhausting 'cause if you can't-
- APAlex Partridge
Hmm
- GRGina Rippon
... be yourself in, in front of somebody you're in a relationship with, it's, it's very tiring.
- APAlex Partridge
Yeah. In a relationship where there is an autistic woman, what happens when perhaps her need for predictability meets a spontaneous partner-
- GRGina Rippon
[laughs]
- APAlex Partridge
... or children or a chaotic family life?
- GRGina Rippon
Right.
- APAlex Partridge
Can that cause huge issues?
- GRGina Rippon
It can cause huge issues. Um, and it takes a lot of negotiation, a lot of understanding from both sides, actually. Um, I think sometimes people can feel everything has to be like this 'cause that's how I am.
- APAlex Partridge
Hmm.
- GRGina Rippon
So at some point there needs to be some understanding about compromise. [laughs]
- APAlex Partridge
Yes. [laughs]
- GRGina Rippon
Which, which if you're a kind of rigid thinker is, is quite tricky. So, so that's something. Um, children and the unpredictability of children can be very challenging. Um, but very often, particularly if the autistic woman is a, a single mother, she can impose her need for routine, et cetera. Um, and children, children are very insightful actually, um, with ad- autistic adults. [laughs] Um, they ca- have a kind of understanding at one level of why somebody's like that-
- APAlex Partridge
Hmm
- GRGina Rippon
... um, which isn't always matched by adults, unfortunately. [laughs]
- APAlex Partridge
I just wanna zoom out for a second, Gina, 'cause this, this I find super interesting 'cause I've met lots of autistic women and some- I think have an insight and an understanding that they're different, and they put a conscious effort into, like we said, camouflaging and altering who they are and, and, and trying to fit in. And then there are other autistic women that I've met who, at least from my point of view, don't have an internal desire to change who they are. They're just proudly themselves. They're authentic. What is the difference between an autistic person who has an insight into their differences and intentionally tries to change who they are to fit in and someone who doesn't?
- GRGina Rippon
Um, gosh. [laughs] Great question again. I mean, I think the aim of a lot of all the discussions I've had with late diagnosed women is having got a diagnosis is part of the, the... You know, then there's, you know, the joy at finding my tribe, the grief of which they'd known about that for longer. But then there is the beginning of quite a long journey towards what they call their authentic self. So, so there is a feeling with the autistic community that you've been hiding, camouflaging your authentic self all your life, and look at what it's done to you. So for your own good and your own wellbeing, then be upfront about being autistic. And of course, in, in, in m- most cases, the understanding of autism, you know, autism awareness, autism acceptance is, is a great help because it allows you to be your autistic self. It allows you to be brave enough to say, you know, "If we're all planning to go to the cinema in a couple of weeks' time, please don't change anything unless you really, really have to, 'cause that would really upset me. Don't s- ring up and say, 'Shall we go to the afternoon show instead?'"
- APAlex Partridge
Yeah. [laughs]
- GRGina Rippon
Et cetera. And hope that people will accommodate that. Um, so that, that would be the, the person who, um, i- is, is tricky, but, but worth the effort if you like, y- you know, worth the effort to, to make them part of the group. Um, the person who feels they have to camouflage, um, at some level they might say, "Well, that's what I've done all my life, and it means I haven't had as bad a time as perhaps my younger sister or, or somebody that I know." And so they kind of feel the difficulties they have might be worth the struggles they have. Um, and I think at some point, and there's a lot of interest in, in late diagnosed women, or the emergence of, of, of, um, problematic, in inverted commas, behavior with perimenopause, for example.
- APAlex Partridge
Mm.
- GRGina Rippon
Where women will say, "I've, I've coped so far and it's worked, but now I can't." Um, and that's the beginning of another long journey. [laughs]
- 20:58 – 22:25
What Happens When You Can’t Mask Anymore
- APAlex Partridge
Yeah. [laughs] I- Is there a point where somebody who genuinely believes that they are coping, uh, has a complete collapse and everything falls down, the scaffolding falls away?
- GRGina Rippon
Yes. I, I think there, there are. And so, i- interestingly, the, the, the work that's now emerging about the perimenopause is very often involves women, successful women, um, high-powered women, women who perhaps have been unusual in what they've been able to cope with, but, but they have been able to cope, and then they effectively, the metaphor often is, hit a wall. And very often it's associated with the peri- perimenopause. It's a bit like the transition from primary school to secondary school. So you've managed so far as an adult, but then some additional factor, the hormonal straw if you like- [laughs]
- APAlex Partridge
Yes. [laughs]
- GRGina Rippon
... it breaks the, the camel's back. Um, and that can be quite profound because you're looking at somebody who for 40 or 50 years has been camouflaging, hiding, coping, achieving, um, and then all of a sudden, for no visible reason, you know, it's not as if they've had some terrible illness, although that may be part of it, um, uh, just can't cope anymore.
- APAlex Partridge
Mm.
- GRGina Rippon
And it's difficult for people to explain why. Uh, so the understanding about the effects of perimenopause, um, on the emergence of, of autism, um, i- is providing very interesting insights.
- 22:25 – 24:19
The Hidden Cost of Masking for Years
- APAlex Partridge
What do you think the long-term c- the long-term risks are of camouflaging too much? Because I suppose camouflaging is another way of just saying you put other people's opinions, other people's wants and needs ahead of your own. And if you do that for long enough, surely you ultimately have no idea about who you are. Your identity is in shatters.
- GRGina Rippon
Identity is a big issue, um, with late diagnosed women. Identity and masking, 'cause masking is another way of blending in, where you present a completely different persona. You're not trying to fit in with everybody else. You might be the class clown that everybody laughs at, or the sporting superstar or something.
- APAlex Partridge
Mm.
- GRGina Rippon
Um, so you hide who you are so that they respect you. They still think of you as different, but they respect you as an achiever, so that's a different way of, of coping. Um, but yes, I mean, uh, ongoing camouflaging, uh, the... Particularly with late diagnosed women, one of the things that emerges is they haven't had, you know, life hasn't been, um, a picnic. [laughs] Um, they've had all sorts of mental health issues, perhaps physical issues, eating disorders, self-harm, et cetera. Um, and then all of a sudden somebody says, "Do you think you might be autistic?" And then you start to realize what you've been doing all, all your life, or what people haven't seen, um, and, and that can be, that can be very challenging. So we know, because we now have quite, well, psychometrically reliable and valid m- measures of camouflaging, you can look at the correlation between how- How profound somebody's camouflaging is, how much they camouflage with instances of, um, anxiety disorders, breakdowns, burnouts, um, physical, other physical conditions as well, and it's clear that camouflaging is very
- 24:19 – 27:58
How Much Are You Actually Masking?
- GRGina Rippon
costly.
- APAlex Partridge
So that's interesting. How do you measure how much someone's camouflaging?
- GRGina Rippon
Um, it used to be, because [laughs] in a way, if you're a good camouflager-
- APAlex Partridge
[laughs]
- GRGina Rippon
... you can't spot it.
- APAlex Partridge
Yes. [laughs]
- GRGina Rippon
Um, and it was clear f- particularly with respect to looking at the stan- the traditional ways of measuring, the gold standard autism tests, where concerned clinicians were saying, "Well, you know, I, I did an assessment on this girl, and she scored way below the clinical threshold on all of the observational schedules, for example. So how, how can I put that right?" Um, it, and it used to be that you could- you'd get a lot of self-report. So somebody would say, you know, "Can you relax? Do you have lots of friends?" And they would say yes, and then you would have a look at some of the sort of red flag-type measures in, in the autism schedule that you'd ta- me- measures that you'd taken, and there would be a mis- disconnect. "Yes, I, I, I'm, you know, completely relaxed in social situations." And then some of the questions they were answering or people were answering about them in social situations, there was a mismatch.
- APAlex Partridge
Mm.
- GRGina Rippon
So that was the early measures, this kind of disconnect, but people like, uh, Will Mandy, um, a, um, a psychologist working with him at, at, um, UCL, KCL, um, would, uh, have eventually devised a, um, a questionnaires. So you would say to him in... You would specifically ask them how they behaved in social situations. You wouldn't just observe it and say, "Well, they seem quite relaxed." [laughs] Um, you would actually ask them how th- how they experienced it, and if they were not trying to [laughs] continue their camouflaging, they would be up front and say, "Actually, I find it really hard, and this is how I deal with it." So you now have a very good metric of camouflaging-
- APAlex Partridge
Mm
- GRGina Rippon
... which we're starting to use in neuroimaging, for example. So you can put somebody in a situation, a social situation. You can get a measure of how they're dealing with that situation differently. So parts of the frontal areas of the brain are much more in- much more activated when somebody's doing a lot of self-referencing, when they're looking at, you know, h- how am I managing this situation? It could be a cognitive task. How well am I doing? Um, but if it's a social task, so you can then get a measure to show how much this person is constantly monitoring their own role in the play that you're getting [laughs] them to look at.
- APAlex Partridge
The self-referencing, is that in real time as the social encounter is happening, or is that after the event?
- GRGina Rippon
Both. But in the scanning situations, it's while it's happening. So you, you, you've devised some, um, online task-
- APAlex Partridge
Mm
- GRGina Rippon
... which is... Or you can get them to imagine what it's like. But obviously, ideally, you'd get them to, to be in a situation which is the kind of situation that you might have assessed in advance they find challenging. Um, so you could do it in real time, but the, um, the after the effect is very often to do with the kind of rumination that autistic women who find social situations challenging go through. They will replay the situation in their, in their minds.
- APAlex Partridge
Mm.
- GRGina Rippon
And they will, "When they said that, did they really mean that?" Or, "When I responded that, should I actually have responded to that?" There is a lot of that, and that's part of the kind of, you know, after the event exhaustion. You can't switch off because the situation you've just come from, you think... Maybe you think, "Oh, that went well. I'm s- make sure I do that again." [laughs]
- APAlex Partridge
Yeah.
- GRGina Rippon
But you might think, "Mm, that was really hard work."
- 27:58 – 29:17
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- APAlex Partridge
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- 29:17 – 34:25
How ADHD Can Hide Autism in Women
- APAlex Partridge
Like, just touching on ADHD, is, is it possible for ADHD to make autism harder to spot in women?
- GRGina Rippon
Oh, yes. Yes, absolutely. I mean, I think, um, uh, you know, as, as we know and as certainly I'm coming to confront, large numbers of women who've been diagnosed with autism, pa- particularly late, um, are also then thinking, "I don't quite fit this picture, but I do... Some of my characteristics are more like ADHD."
- APAlex Partridge
Mm.
- GRGina Rippon
And of course, until 2013, you couldn't have both. You could [laughs] only be one-
- APAlex Partridge
Yes
- GRGina Rippon
... or the other. Um, great diagnostician decisions there.
- APAlex Partridge
[laughs]
- GRGina Rippon
Um, so now you can have both.
- APAlex Partridge
Mm.
- GRGina Rippon
There's quite a lot of people who have both, and there is an emerging movement about AuDHD, where people say, "Actually- And this is where sometimes it may reveal the problems with diagnosis, or it may reveal the, the apparently rigid categories, autism and ADHD are in. People will say, "I've got both." Um, and then there should be a third category, AuDHD.
- APAlex Partridge
Mm.
- GRGina Rippon
Um, and it may be, uh, DSM-6 is being written-
- APAlex Partridge
Yes
- GRGina Rippon
... as we speak. So it may be that AuDHD becomes a category. Um, maybe autism, autism, I don't think will stay as a spectrum. Um, and, and ADHD may, again, not be so rigid in terms of, of, of how it's defined. So there may be a blending. Um, yeah.
- APAlex Partridge
If AD- if autism you don't think will stay as a spectrum, what do you think it will turn into, in terms of the diagnostic criteria and the cutoff point for reaching an assess- a, uh, diagnosis?
- GRGina Rippon
Yeah. Well, I think, I think subtype... The- they're sort of halfway house. I mean, I actually think there are big problems with the way we slap categories on hugely overlapping areas of behavior. It's a problem for geneticists, 'cause, because they think-
- APAlex Partridge
Mm
- GRGina Rippon
... you know, somebody that's autistic is like this, and it says it in the book. [laughs] But then they look at, you know, a thousand autistic people, and they get a thousand different profiles, and they think, "Well, that-
- APAlex Partridge
Yes. Yeah
- GRGina Rippon
... doesn't seem to fit in with what we think autism is." So it, it... I think they will probably go into subtypes. So it may be autism type one, autism type two, like diabetes type one, diabetes type two, if you like. Um, still implies there's nice, discreet categories available, [laughs] which I think could be the underlying problem. Um, you know, I, I think that would be the first stage. The next stage may be to take advantage of, um, AI, uh, large language learning models-
- APAlex Partridge
Mm
- GRGina Rippon
... and say, "Let's find patterns and see how people fit and how groups of people might match these patterns." And you might then give them completely different names.
- APAlex Partridge
Yes.
- GRGina Rippon
You know, they might not be autism or ADHD or whatever. Um, yeah, so that's way in the future. [laughs]
- APAlex Partridge
Yeah. [laughs] So fascinating, 'cause AuDHD, having both ADHD and autism, is, is a, it's a huge topic on this conversa- on this podcast-
- GRGina Rippon
Of course
- APAlex Partridge
... and we've done many, many episodes on it.
- GRGina Rippon
Yeah, yeah.
- APAlex Partridge
I always wonder, is it possible if, if a, a woman does have ADHD and perhaps also autism, but she doesn't know that yet, could the ADHD make her too talkative, spontaneous, impulsive, s- to the point where she doesn't fit the stereotype of autism-
- GRGina Rippon
Yeah
- 34:25 – 37:01
Can You Accidentally Mask During an Autism Assessment?
- APAlex Partridge
autistic, could that woman be so acutely good at masking, that even during the assessment, she masks so well that the psychologist or psychiatrist doesn't see it?
- GRGina Rippon
Oh, yes. I mean, and, and I think that's the problem with all sorts of late diagnosis, because the clinician has got an expectation and probably an algorithm, you know-
- APAlex Partridge
Yes
- GRGina Rippon
... a mathematical formula, which says, you know, "Here's the line. You're above it, or you're below it," or-
- APAlex Partridge
Mm
- GRGina Rippon
... however they, they think. Um, so yes, and I mean, and certainly younger g- that's the problem with younger girls and autism. Because part of the observational schedule might be, how much does the girl engage with the person doing the observation? So if she's well-practiced, she will say, "Good morning," you know, et cetera. Whereas the canna type [laughs] autistic child might not respond-
- APAlex Partridge
Mm
- GRGina Rippon
... avoid eye contact, et cetera.
- APAlex Partridge
When you say canna type, just remind us what you mean by that.
- GRGina Rippon
Sorry, I'm, I'm thinking of the kinda traditional view of autism-
- APAlex Partridge
Sure
- GRGina Rippon
... as the aloof loner.
- APAlex Partridge
Yeah.
- GRGina Rippon
You know, the avoiding eye contact, et cetera. The picture that-
- APAlex Partridge
Yes
- GRGina Rippon
... lots of people have, Rain Man type person. [laughs]
- APAlex Partridge
Yes. [laughs]
- GRGina Rippon
Um, yeah, so they would be identified-
- APAlex Partridge
Mm
- GRGina Rippon
... as autistic almost immediately, you know, possibly before they'd actually fulfilled the, done the test. Whereas insightful clinicians have said if they see a girl more than once who they weren't sure was autistic, but they'll bring her back, they will notice that her socio- so- sociability is scripted. She says exact- uses exactly the same words-
- APAlex Partridge
Mm
- GRGina Rippon
... to play at being, um, in a, in a- ... dyadic conversation or something
- APAlex Partridge
Yes. Yeah. Yes. No, so interesting. I had a guest who said, um, he went to see a doctor. He w- he thought he was genuinely depressed. Uh, and he walked in, and the doctor was like, "How can I help? Is everything okay with you today?" And h- and he... It was almost a knee-jerk response, and he said, "Yes. Fine, doctor. Absolutely okay."
- GRGina Rippon
[laughs] Yeah. That's right. By the way, you see
- APAlex Partridge
And the doctor's like, "Well, what are you, what are you doing here?" [laughs]
- GRGina Rippon
Yeah, yeah, yeah. Yes.
- APAlex Partridge
He ended up walking out, and he couldn't get-
- GRGina Rippon
Yes
- APAlex Partridge
... he did eventually, but he was making the point that that's quite a common masked, automatic response to-
- GRGina Rippon
Yes
- 37:01 – 38:28
The Dangerous Side of People-Pleasing
- APAlex Partridge
zooming out, and to be a people pleaser, w- and that's gonna look different to anyone. Can that make an autistic woman vulnerable in certain areas of their life?
- GRGina Rippon
There's a lot of evidence about abusive relationships, um, and history of abusive relationships. Particularly, if you think about it, if, you know, you really want to fit in, but you don't quite, because one of the issues is that sometimes it's clear that this person, if you're having a conversation with them, it- it's quite hard. So you start to think, you know, "Is there something unusual about this person?"
- APAlex Partridge
Hmm.
- GRGina Rippon
Um, I think it's a comment that Utah Frith made, um, about people who communicate well perhaps shouldn't be included in a diagnosis [laughs] of, of autism. Um, but I think, uh, yeah, I, I, I think the, that disguising what you're like, um, makes it even harder, and that can lead to damaging relationships-
- APAlex Partridge
Hmm
- GRGina Rippon
... because if it's a relationship, you know, if you haven't had a relationship for a long time, or if you haven't had the kind of social training that you might have by being, you know, part of adolescent groups, et cetera, you don't spot the red flags-
- APAlex Partridge
Hmm
- GRGina Rippon
... um, for coercive relationships, et cetera. Um, so there is a lot of issues with associated with that.
- 38:28 – 39:42
The Questions Autism Assessments SHOULD Ask
- GRGina Rippon
Yeah.
- APAlex Partridge
Do you think clinicians, when they're assessing autistic women, do you think they should stop asking, like, "Can she do this task, X, Y or Z?" whatever it is, and start asking, "What is the cost-
- GRGina Rippon
Yes
- APAlex Partridge
... of doing this task?"
- GRGina Rippon
I, I think that is a really important aspect of it because most of them, the questions are, you know, "Can you do this or not?" It's a, "Can you do this, but how hard is it?" [laughs]
- APAlex Partridge
Yes. [laughs]
- GRGina Rippon
And I think that seems to be the difference, uh, that was missing, I think, from the original assessments.
- APAlex Partridge
Hmm.
- GRGina Rippon
Um, and certainly talking about ADHD, for example, um, recently in talking about medication, people who say the medi- what helps them, how the medication helps them is that they don't have to work so hard, or they can focus better on what they're being asked to do. So they're not trying to deal with something when there's, you know, butterflies all around, or you've got this pinball mind-
- APAlex Partridge
Hmm
- GRGina Rippon
... which goes off on all kinds of tangents.
- APAlex Partridge
Fantastic. Thank you, Gina. And I've got a question from one of the women that I know listens to the podcast-
- GRGina Rippon
Oh, right. Okay
- APAlex Partridge
... In the Washing Machine of Woes-
- GRGina Rippon
[laughs]
- APAlex Partridge
... which
- 39:42 – 41:17
What I Wish Every Autistic Woman Knew
- APAlex Partridge
is my representation of ADHD to rep- represent memory loss 'cause I always forget my laundry in the machine after the cycle-
- GRGina Rippon
I remember that. Yes
- APAlex Partridge
... has finished. So it also doubles up as a public service announcement-
- GRGina Rippon
[laughs]
- APAlex Partridge
... for anyone listening who might also struggle with that.
- GRGina Rippon
Yeah, yeah.
- APAlex Partridge
Someone's asked, Gina, In the Washing Machine of Woes this week, "How do I distinguish high masking autism from anxiety, OCD, trauma, or perfectionism-
- GRGina Rippon
Oh, gosh
- APAlex Partridge
... when they can look similar and coexist?"
- GRGina Rippon
In, in a way, um, autism encompasses all of those. [laughs]
- APAlex Partridge
Hmm.
- GRGina Rippon
Um, so I, I think the things... You know, are these issues which are lifelong? I think that's quite important, too. Um, have you always had difficulties? 'Cause sometimes OCD will em- emerge later, et cetera.
- APAlex Partridge
Hmm.
- GRGina Rippon
So if it's always been a problem, then I, I think I'd look at autism. Um, and again, you could, setting somebody lots of tasks, find out about each of these and which of these best describes me if, if, if it's an individual. Um, but the perfectionism is very classic autism. OCD is very often mistaken for autism.
- APAlex Partridge
Hmm.
- GRGina Rippon
Um, and sometimes, unfortunately, it's a-- if an OCD treatment is inappropriate, that then may flag up there's something else more underlying. I think autism's more generic in terms of it, it affects all sorts of parts of your life, whereas OCD and perfectionism may be quite specific.
- 41:17 – 43:07
Why Autism Can Look Like OCD
- APAlex Partridge
How can autism be mistaken for OCD?
- GRGina Rippon
Um, because very often, particularly, um, I've talked a bit about the predictive brain.
- APAlex Partridge
Yes.
- GRGina Rippon
Um, if the way of making the world more predictable is having very rigid routines or very structured ways of organizing your life, your house-
- APAlex Partridge
Hmm
- GRGina Rippon
... whatever, it might look like OCD. Um, so if you always have to walk the same way. Um, I had a student once who ha- was having a lot of difficulties, and I told her to come and see me on a regular basis, and she was getting later and later and very often didn't turn up. Um, and it turned out that the library was between her, um, student accommodation and, and my office. Um, and for some reason, she had felt that it was gonna go well if she walked three times around the library. Before she came to my office. Um, and she was starting to struggle quite a lot. So the three times meant that she didn't see somebody she knew, so it got more and more difficult very often. [laughs] It was s- sometimes nine times to find the library-
- APAlex Partridge
Right. [laughs]
- GRGina Rippon
... or whatever. So it's quite specifically focused on one thing.
- APAlex Partridge
Mm.
- GRGina Rippon
I think the autism aspect is, is much more, applies to everything. Everything has to be right, in the right place, et cetera.
- APAlex Partridge
Right. Sure. Fascinating.
- GRGina Rippon
But that's very much, you know, everybody's different.
- APAlex Partridge
Just finally, before we close, I've got a surprise for you.
- GRGina Rippon
Oh.
- APAlex Partridge
I delivered to you a letter that the previous guest wrote.
- GRGina Rippon
Oh, gosh.
- APAlex Partridge
And they wrote one to their younger self, so I'm gonna reach behind me and grab it.
- GRGina Rippon
Oh, right. Right.
- APAlex Partridge
If you could kindly read that, Gina.
- GRGina Rippon
Oh, oh, gosh.
- APAlex Partridge
This is a letter to the previous guest's younger self.
- 43:07 – 46:00
A Letter to My Younger Self
- GRGina Rippon
Dear younger me, I wish I could come back and find you, not to change you, just to tell you something you deserve to hear. You don't have to work this hard to be acceptable. I know how closely you watch everyone, how you study conversations, rehearse what to say, and learn the version of yourself each room seems to want. You become so good at it that nobody sees how hard you're trying. Eventually, even you don't. People tell you, "But you're sociable. You have friends. You're doing well. You seem fine." And you wonder why being fine leaves you so exhausted. I wish somebody had asked, "What does socializing cost her?" I wish somebody had noticed the girl who held everything together all day, then fell apart the moment she got somewhere safe. You will spend years wondering why small things feel enormous, why changed plans overwhelm you, why you can love people deeply and still need them to stop talking to you. You might call yourself difficult, too sensitive, dramatic. Please don't build your identity out of those words. One day, the strategies that carried you this far might stop working. Please don't mistake that for failure. You may simply have spent too many years paying an invisible price for appearing okay. I wish I could stop you trying to become easier for everyone else, less sensitive, less intense, less you, because whenever something feels difficult, you think you need to try harder, watch more carefully, be nicer, don't upset anyone, mask better. But sweetheart, you've been trying hard enough. One day, you may finally find words for things you thought only you experience, and you might look back and wonder, how did nobody see me? I see you now. I see how hard you tried to belong, and if I could give you one thing, it wouldn't be the ability to mask better. It would be permission to stop performing, to rest, to have boundaries, to be exactly who you are. You spent so long becoming the person everyone expected to see. Now, I hope you get to meet the person underneath. Love, your older self. What an amazing letter.
- APAlex Partridge
Wow, and beautifully read, Gina.
- GRGina Rippon
Wow. That was... Gosh, that's everything.
- APAlex Partridge
Everything we've-
- GRGina Rippon
Absolutely everything
- APAlex Partridge
... So fascinating.
- GRGina Rippon
Yeah, yeah. Gosh.
- APAlex Partridge
Thank you so, so much for reading it so beautifully.
- GRGina Rippon
That is a wonderful letter.
- APAlex Partridge
On behalf of everybody listening and watching Gina trying to understand themselves, thank you so much.
- GRGina Rippon
Well, thank you. Thank you. [laughs] That is amazing. Gosh. [upbeat music]
- 46:00 – 47:45
Focused survey read
- APAlex Partridge
If you're living with ADHD and attended further or higher education, or if you're studying at college or university at the moment, Focused want to hear from you. They're running a survey where you can win up to £150 in Amazon vouchers just for taking part. It's five easy questions all about how ADHD affected your studies and social life during college and university. There's a link to the survey in the description. You need to be aged 18 or over to take part. Your answers will be anonymized, and they'll publish the results in a few weeks' time. In the interim, the results are in from the ADHD & health survey Focused ran a few weeks back. Some really interesting findings in this one. 91.2% of people felt like ADHD had had a negative impact on their overall health. Going deeper, 85.2% said that ADHD had negatively impacted their diet, 72.8% said it had negatively affected the amount of physical activity and exercise they do, 92.4% said ADHD impacts how well they sleep, with two thirds, or 66.8%, of respondents saying they slept for six hours a night or less, which is obviously lower than the recommended average, and 53.6% of respondents said that they had missed a medical appointment due to ADHD. So some numbers there that demonstrate just how much ADHD can affect physical health in addition to mental health. But interestingly, there were some positives that came out of this too. 11% said ADHD had positively affected their physical activity and exercise, and 7% said it had a positive effect on their diet. You can find a more detailed analysis with expert commentary from Danielle Mulligan over on their website, or give them a follow on TikTok and Instagram to see the full results. Links all in the description.
Episode duration: 47:45
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