On autism, friendship and romance, with Dr Felicity Sedgewick

Felicity is a developmental psychologist at the University of Bristol who specialises in autism, relationships, and gender. During this podcast she chats to Sue about a piece of work looking at the friendships and romantic relationships of autistic women, and the ways in which they are both similar and different to the experiences of non-autistic women.

You can follow Felicity on Twitter here.

The paper discussed in this episode is:
Sedgewick, F., Crane, L., Hill, V., & Pellicano, E. (2019). Friends and lovers: The relationships of autistic and neurotypical women. Autism in Adulthood, 1(2), 112-123.

Transcript

Sue: 0:09

[Podcast jingle][ringtone] Hello? Oh, it is recording. I see the little figure. Okay, great. I will do my little spiel and then I'll introduce you. Nice. Okay. Here I go. Hi, this is Sue from the Salvesen Mindroom Research Centre at the University of Edinburgh. And this is our latest PsychologiCALL, it's a little podcast that we're recording with psychologists, um, to try and think about what psychology maybe has to tell us that's useful at this time during the coronavirus lockdown. And today's PsychologiCALL is with Felicity Sedgewick from the University of Bristol. And she's going to be talking to me about her paper, which has this brilliant title,"Friends and lovers: The relationships of autistic and neurotypical women". So Felicity, how are you today?

Felicity: 0:55

I'm very well, thank you!

Sue: 0:57

Good! Thank you for joining me!

Felicity: 1:00

Thank you for inviting me!

Sue: 1:03

So why don't you just start off by telling me what you discovered in this, um, bits of research that you did?

Felicity: 1:10

So the key finding was that autistic women and neurotypical women actually have a lot of very similar experiences in their romantic relationship and in their friendship, but that autistic women had had a lot more negative experiences, particularly in early adulthood, so sort of once they'd left home and gone to university, or started in the workplace.

Sue: 1:35

Right.... And, and those negative experiences, content warning for any listeners, because I guess this could go into an- not such a nice place, but could you give me just an indication of the kind of things you're talking about there?

Felicity: 1:51

Yeah, so, um, most of the autistic women described having been bullied at school, which we know is very common generally for autistic children, but particularly once they reached adulthood they had a lot more experiences of being taken advantage of or exploited in sexual and romantic relationships.

Sue: 2:10

Um...

Felicity: 2:10

So, and that was incredibly common, it was about 80% of the women I spoke to had had those kinds of experiences.

Sue: 2:18

Yeah. Okay. Um, so what led you to be asking these questions in the first place? What brought you to this topic?

Felicity: 2:27

Well, we know very little about autistic adults and their relationships in general and what we do now comes from work that's pretty much all done with men, and particularly that had been done with people who were diagnosed in the sixties, seventies and eighties who had co-occurring learning difficulties. So we know almost nothing about the relationships of autistic adult women. And I wanted to plug that gap because we know there are gender differences in the friendship of autistic teenage boys and girls, but nobody had looked at adults yet.

Sue: 3:02

Right... And so how did you go about doing the study? Was this interviews or survey or something else?

Felicity: 3:10

It was mixed methods. So I asked people to do some questionnaires, to do a video measure where they had to watch actors in these quite stilted and strange nineties situations and answer questions about what had been going on. And then they did an interview as well.

Sue: 3:31

Um, and, and is the paper, this paper reporting on all of that, um, all of those different types of data?

Felicity: 3:38

Yes it does.

Sue: 3:39

Yes...

Felicity: 3:39

So, um, the questionnaire was about how satisfied people are with their relationship. Um, and I should have mentioned earlier that actually, despite all of those negative experiences by the time women were in their sort of mid adulthood, so after about the age of 30, they had generally found themselves in quite positive situations. They were in good relationship or they were single and happily so. So that their relationship satisfaction was actually very similar for non-autistic women but just slightly later in life.

Sue: 4:13

Right, right. So they... They're, they're getting to a happy place, sooner or later.

Felicity: 4:19

Yeah!

Sue: 4:19

That's a lovely[laughs],that's a lovely[thing].

Felicity: 4:21

Yeah!

Sue: 4:22

But the-, the thing I'm interested in with mixed methods research like this, where you've got kind of quantitative data from the questionnaires and qualitative data from the interviews is that, you know, it can be quite hard sometimes weaving those together. Um, and so I guess I was curious, you know, did you analyse the surveys and then go and do the interviews based on that? Or did you collect the data all at once? Like how did you join those bits of the puzzle together?

Felicity: 4:52

So I did the data collection all at once, but the two parts had both been informed by the existing literature and by my"teenage" study. So I'd done a similar set of measures with teenagers already. And I wanted to look at how people's responses to those measures changed from teenagerhood to adulthood. So it was following a consistent thread throughout my PhD.

Sue: 5:21

Um, well, I was just wondering about whether, whether you did kind of expose contrast between, you know, the data that you've collected previously from, from teenagers, or were you getting really consistent patterns?

Felicity: 5:35

Um, so there was some consistent-, some consistent patterns. It changed, uh, sorry, some were similar and some were different. Some of the similarities were particularly around difficulties interpreting social situations and knowing what someone means and reading between the lines; which I think we would expect in an autistic group, um... But one of the major differences was that for autistic teenage girls, the way they handled difficult social situations was very all or nothing. They were either thinking that a fallout with a friend was entirely their fault and they[the autistic teenage girl] had to do everything to fix it, or it was entirely the other person's fault and they[the other person] had to do everything to fix it.

Sue: 6:16

Hmm...

Felicity: 6:16

Whereas the autistic adult women had a lot more negotiation strategies and a lot more, um, nuanced thinking about the social situations they found themselves in. And they themselves put that down to almost"trial and error" and having often got it very wrong during their childhood and adulthood, and losing friendships they valued, or things like that; and then consciously having to learn a lot of the negotiation strategies that neurotypical girls and women seem to pick up a lot more easily.

Sue: 6:47

Um, so there's a kind of, um... Well, it's not exactly"practice makes perfect", is it? I don't think anyone is ever perfect at having relationships[laughs]. Um, but there's definitely this sort of benefit of accumulating experience for these autistic women, right?

Felicity: 7:04

Yes, definitely.

Sue: 7:05

So I guess I wonder if you think there's any ways that we could accelerate that process, you know, so that autistic young women can reach a point of satisfaction with their relationship, maybe feeling slightly more, more balanced, if that's a good word in terms of how they relate to other people or how they deal with those tricky scenarios. Is that something that you've thought about?

Felicity: 7:31

It is, um, I think there's a real role for social skills groups, but that are tailored for girls because the social skills that girls need are very different to boys and a lot of our existing autism workshops are based around boys. Um, so I think sort of reflections on what it takes to be a teenage girl rather than what it takes to be an autistic boy are really important.

Sue: 8:02

Hmm...

Felicity: 8:02

And interestingly, as well, a lot of the teenage girls I had talked to previously and the autistic women in this study talks about the different having their diagnosis made.

Sue: 8:15

Hmm...

Felicity: 8:15

So, having, having your diagnosis and knowing that you are autistic and being able to say that to somebody you're interacting with and being able to say"look, I'm sorry. I just don't understand what you mean because I'm autistic. I don't get, um, figures of speech the same way. Can you explain it to me really clearly?" Or being able as a teenager to explain to your friends that you're really, really upset because you know, this was a change to the plans, and so you're dealing with that stress on top of being upset because they're late, for example, even teenagers who'd have their diagnoses at 14-15 w ould keep saying that it made a difference, because they understood themselves better, and therefore could help other people understand them. And the adult women I talked to that was a transformational experience for them and their relationship.

Sue: 9:08

Hmm. Yeah that's amazing, isn't it? I think this is something that's an ongoing discussion in psychology, more generally about, you know, the value of diagnostic labels, because there are anxieties about a diagnostic label being a burden, right. Or, you know, sort of stigmatizing and so on. And yeah, I really understand those. Um, I'm sure you do too, but it's, it's also important to recognize those benefits. And I would imagine a lot of that depends on not just having the label, but having a sort of, you know, ownership of it and, and, and, uh, uh, a sort of positive sense of self knowledge from it rather than it being like a, you know, a sort of heavyweight that you're dragging around, right?

Felicity: 9:55

Yes, definitely. I agree with that.

Sue: 9:57

And do you think, do you think autistic women then, uh, do you think... Do you think there was anything about your participants that makes them uniquely well-placed to benefit from the label? You know... Would you-, or would you say that your finding in that regard is, is something that's more generalizable? You know, would you sort of feel confident saying"yep, diagnostic labels are useful", you know, for autistic people growing up?

Felicity: 10:25

I think I would actually, it feels like quite a bold statement, but not only in my own work, but in so many studies with autistic adults, we now see people saying"getting my diagnosis changed how I thought about myself"...

Sue: 10:39

Yeah...

Felicity: 10:39

..."It stops me feeling like I was the one who was failing at things". And that's so crucial. And particularly for young people growing up, feeling like a failure just sets in this low, self-esteem this low sense of what you're capable of doing, that can have such massive impacts on every part of your life. That if we can give an explanation for why you find things difficult, that's got to be more useful than letting someone thinks that they're not able to do it themselves.

Sue: 11:10

Yeah. Yeah, absolutely. I think that's such an important takeaway and this is the nice thing about doing a podcast is you can make bold statements perhaps more than you would in a paper.[Laughs]

Felicity: 11:20

Yes![Laughs]

Sue: 11:23

Um, and so just one more question about the kind of practical consequences of the research and, and I, I have some insider knowledge here, so I know you'll have a good answer for this. What about, um, sex education in schools? Right? So, you know, you've talked a bit about managing kind of friendships and, you know, challenging relationships that perhaps young women might have with their classmates and so on, but you also mentioned the kind of, um, uh, the risks that, that autistic women are facing in terms of the possibility of, you know, negative, um, interactions in the kind of yeah, sort of sexual harassment space. So you got thoughts about how we can, um, you know, prevent that from happening?

Felicity: 12:09

Yeah. Well, I'm in the middle of conducting a study where I'm asking autistic adults of all genders, about their experiences with sexual and domestic violence, um, to try and understand how it impacts everybody, not just girls and women, but I think one of the key, and I think we do need to develop tailored sex and relationship education for our autistic young people, because so much of the way we talk about sex and relationships is couched in sort of in double entendres or in fluffy language. That means that people can come away not getting the message the teacher thinks they've delivered...

Sue: 12:54

Yeah, yeah, absolutely.

Felicity: 12:54

... Which is really important. Um, and I think for parents as well, it's really important to understand that your autistic child is likely to want sexual and romantic relationship. Um, you know, being autistic does not mean you have no desire for those kinds of experiences. And I know some parents, in another study I did, talked about assuming that their autistic daughter wouldn't ever be interested in it, so they never taught her about, you know, how to stay safe or how to say no, because she wasn't interested. And the problem is sometimes the world is interested in them, whether or not it's reciprocal.

Sue: 13:36

Yes, absolutely. Absolutely. But also that that judgment may not always be the case, right? So, you know, your maybe your, I don't know, young teenage daughter is not seeming to be interested in sexual relationships, but that's, that's not always going to be the case.

Felicity: 13:52

It doesn't mean that at 17 she won't be.

Sue: 13:54

Sure, exactly.

Felicity: 13:55

Yeah.

Sue: 13:56

Exactly. And then, you know, it's too late to, well, not too late to ask, but it may feel that way, you know, like you've got to just get on with it at that point. Um, Oh, it's such important work Felicity. I'm so pleased that you're doing this.

Felicity: 14:11

So am I! I, I find it really interesting and important to talk to people about. I find it... I feel very honored that people are willing to share those sorts of stories and things, but I do think it's got the potential to have really positive impacts for our young people growing up so that they don't have to go through that trauma that so many of the older generations have.

Sue: 14:35

Hmm. Absolutely. Absolutely. Um, so, well, that's a very hopeful note for the future. Um, and staying on a hopeful theme. The last question I wanted to ask you is about, you know, the sort of advice that you might give to early career researchers, uh, students post-docs, who are listening. I know that you're in your, um, first lectureship position at the moment. Um, so I wondered if from that position of, you know, career stability, looking back in a little bit, whether you've had some great advice for people who might be listening, especially feeling a bit vulnerable right now with all of the, um, uncertainty that's around us.

Felicity: 15:19

Um, it's hard because I feel like I've only just come out of that instability. And unfortunately, I think there's sometimes as much luck as skill in getting there. Um, I know I had a lot of rejections and jobs I didn't get, and... you kind of just have to keep applying, but that's very, very common advice. Um, the other thing I think I found really useful was learning to do things that not everybody can do, which sounds very generic and very fluffy as well, but things like learning to code in R made a really big difference, I found, to the way people responded to me say in interviews, um, because I'm a mixed methods researcher, often people put mixed methods and then they're sort of 80/20. And I think if you can try and make yourself as genuinely, um, skilled in as many areas as possible, then that really stands out.

Sue: 16:26

Hmm. That is great advice! Thank you! Um, well we should probably draw the cl-, to a close in the interest of maintaining our, uh, bite-size goals.[Laughs] Um, but thank you so much for your time Felicity and for your really interesting and important work. I think that's given us loads of really valuable things for people to think about. And for anyone who's listening to this, you'll be able to find out more about the work that Felicity's talked about by following the links on-, that we'll post on the podcast page, which is at ed.ac.uk/salvesen-research. So thanks very much Felicity, bye!

Felicity: 17:12

Thank you! Bye![ringtone]

Sue: 17:12

Okay we did it! I thought that went quite smoothly![Podcast jingle]