Program: The relationship spectrum

Emma: Just a note before we start, this episode contains reference to suicidal ideation.

Dr Jac: It can be difficult, I think, when your approach to socialising and relationships doesn't look like what other people might expect.

Pippa: I think I'd turn myself upside down trying to just make myself into somebody who was likeable to absolutely everybody I met.

Lizzy: I don't know if it's the friendship, if it's them that's different. I think it's me showing up differently and feeling more accepting of myself and my needs.

Grace: Hi, I'm Grace Tame, and in this series I look into what life is really like for autistic women and gender diverse people. If you haven't listened to the first two episodes, scroll back in your feed and do it right now. In this episode, we talk about relationships, friendships, partnerships and parenthood, and find out what autistic women bring to these connections. There's a decades-old stereotype that autistic people lack empathy and aren't socially driven. But new research suggests that autistic girls are more responsive to social rewards than previously thought. While our socialising might look unique, it doesn't mean that we don't want meaningful relationships. Like everyone else, we're all just trying to connect in ways that feel right for us.

Grace: I'm Grace Tame, and this is Autistic AF.

Lizzy: Yeah, I just always had this thing, like, the first one that I touched was the one that needed me. Aww. And I can't leave it.

Grace: This is Lizzy. She's 30 and lives in Melbourne with her parents. When she was a kid, Lizzy loved soft toys and had a particular fondness for ones that were a bit different.

Lizzy: My mum would say, oh, get another one. This one's stitching is a bit weird. It's like its eyes might fall off later or something. Just get a different one. And I would say, no, but this one needs me. Obviously, if no one's going to choose it now, I need to choose it. I need to protect it. And then, like, empathising with this very, like, projected experience of exclusion and wanting to save them from that.

Emma: This feeling of being an outsider continued on into primary school, but she did have one best mate she could truly be herself with.

Lizzy: She was really confident and outgoing and funny, and she really drew that side out of me. And that's why, like, I reflect on me as a kid and I was like, I was confident, outgoing and funny because I had someone to do it with me and to, like, let me know that it's safe to do that. You had an advocate. Yeah, I had an advocate who really knew me because she'd grown up with me.

Grace: How did separation from this friend change you or affect you back then?

Lizzy: Yes, so we went to the primary school together and then we had to go to different high schools. And I remember coming home pretty much every day and crying. And there was one day, probably like term three, and I was like, oh, I haven't stopped crying yet. Like it's not just the transition to high school and that you get over it and you make friends, it'll be OK. Because I just felt so lost without her. And it was so difficult for me to feel free and like I was allowed to be myself. I really miss, like, having her as my rock and like my advocate.

Grace: Like many autistic girls, Lizzy preferred her safe friend and found the social rules around female friendships really tricky to navigate. To cope, she learned to mask, internalising who she really was. In her late teens, Lizzy remembers flicking through Tumblr and coming across the hashtag "actually autistic."

Lizzy: And I always sort of kept it a secret, the fact that I would read these posts and be like, oh, I relate. But like, that's not me. That's not my community. But I remember like relating to a lot of those posts talking about autism.

Grace: Lizzy got an ADHD diagnosis at 22, but it didn't explain everything she was struggling with. It was when Lizzy started working as an occupational therapist and her boss put up a PowerPoint on autism that something finally clicked.

Lizzy: I remember my boss going through like some of the experiences that late diagnosed autistic people can have, such as mental health issues and burnout, chronic suicidality. I got home and I remember just flopping on my bed and bawling my eyes out like something had been unlocked. And yeah, it was a lot. And then the thing that was quite notable to me was a feeling of resentment towards the kids that I was working with. And I realised, oh, it's because they're getting the help that I wanted or needed as a kid.

Grace: So how did it feel when you finally did get a diagnosis at age 28?

Lizzy: It felt like I was supposed to say it felt like liberating and everything made sense. But that was a lot of grief. So I really experienced quite a lot of skill loss and identity loss. And I think that really impacted my friendships as well.

Grace: Two years ago, you suffered quite a severe period of burnout. Tell me about what happened back then and how your recovery is going now that you're living back with your parents.

Lizzy: It just looks like extreme fatigue, like so tired, feeling really incompetent, which was really shocking to me because I was a very high achieving. It was like I didn't know who I was anymore. Yeah, it looked like not working, finding it really hard to see friends, not dating, hardly doing hobbies. Yeah, just finding it really hard to just maintain being a person. I also experienced real meltdowns. And maybe I'd experienced them before, but it was never to that extent. So like, I think so many years of doing that, which is like, again, the impact of masking, my body was just like, you need to let this out.

Dr Jac: If there's nobody you have that you can feel safe to unmask with, then it's effectively impossible to have a really genuine, deep relationship with somebody.

Grace: Dr. Jack Den Howing is a research psychologist at La Trobe University in Melbourne and an autistic activist. Their research focuses on the wellbeing of autistic people and as an autistic person themselves, they bring first hand insight. A huge part of wellbeing for many autistic people is having meaningful relationships. But if you've spent a lifetime masking, this can be challenging.

Dr Jac: So masking is something that we've only really started to understand in the last 10 or 15 years. It's that idea of pretending to be normal, trying to fit in. It can involve things like hiding your naturally autistic behaviours, so avoiding stimming, trying to move in more neurotypical ways.

Grace: Stimming might look like repetitive movements, sounds or words that help regulate and soothe a person, from rocking and tapping to humming or skin picking. But hiding yourself comes at a cost.

Dr Jac: It means that all of the relationships that you've developed have been relationships with the pretend you. They're relationships with the mask rather than relationships with the real you. And it's really difficult to establish a genuine trusting relationship where you feel safe and connected if you're not being your real self.

Grace: Yeah, because there's a ceiling on those relationships. If you can't show who you truly are, intimacy can only go so far as well.

Dr Jac: Absolutely. A hundred percent. And I think that's it's not something that's necessarily exclusive to autistic people. I think a lot of people probably relate to that idea of, you know, you maybe have a particular kind of relationship with your colleagues at work that might be different from the relationships that you have with your family or your really close friends. I think the difference for autistic people is that when you are masking, even your closest relationships might be at that kind of colleague level.

Grace: It can be really isolating.

Dr Jac: Absolutely.

Grace: A lot of autistic people, and I can certainly relate to this personally, we find comfort in smaller groups or in one on one situations. Can you explain why it's harder to participate in larger social groups for many autistic people?

Dr Jac: My guess is that it would be partly, you know, the sensory environment. Yes. The more people that are around, the noisier things are going to be, the more visual stimulus there is. But also the more people that are in a group, the more social nuance there is to navigate.

Grace: Yeah. Yeah. You've got unspoken rules. You've got shifting alliances. You've got nuanced politics among many different people.

Dr Jac: It's often really helpful to have a go to safe person. And a lot of autistic girls and young women will develop a connection with their kind of one safe person.

Grace: I have. Yeah, I have mine.

Dr Jac: Yeah. Yeah. Yeah. And that can be really, really helpful for people in terms of navigating those big kind of social groups. Having somebody there to kind of almost be like a bit of a translator.

Grace: Yeah.

Dr Jac: To help understand some of those nuances that might not come naturally to us. And to also hopefully to kind of advocate and be on your side and be the person who's going to be in your corner in those occasions where maybe you do kind of misstep.

Grace: Some of these missteps in communication can be explained by something called the double empathy problem, a term developed by autistic researcher Dr. Damien Milton. It recognises that the ways autistic people communicate and understand each other can be very different to what neurotypical people might expect. So rather than thinking autistic people lack empathy or social skills, it's really just a misalignment in communication styles. And it goes both ways.

Dr Jac: If you have two neurotypical people or two autistic people, they might have a closer or a more similar experience that they're bringing into that interaction. And so they're going to kind of mesh more easily and interact more easily. It's essentially the idea that we can relate and get along better with people who are more like us.

Grace: Can you tell me about some of the latest research that shows very high rates of gender diversity and queerness among autistic people assigned female at birth?

Dr Jac: Yeah, absolutely. I think this is really fascinating. And we are just super queer. Like, we are so gay.

Grace: I can't deny.

Dr Jac: So autistic people way more likely than neurotypical people to be trans or gender divergent.

Grace: Can you give us some numbers, some stats on that?

Dr Jac: The thing with numbers is it always depends on which study you look at. But the research kind of indicates it's somewhere between maybe seven to 15 percent of autistic people are trans or gender divergent, which is in the general population. I think that's somewhere like around 1 percent. Yeah. We're also way more likely to be queer. There has been at least one study that came up with 70 percent of autistic females were queer. It's usually sort of more like, I think, about 40-ish percent of autistic females are in the I don't just like men category. So, yeah, we're super queer.

Pippa: There are so many different personalities I've taken on over my lifetime and so many different ways of being me. I think for a very, very long time, I didn't know who I was.

Grace: Pippa's 40 and lives in Brisbane with her two sons and wife, Hannah. She was diagnosed with autism level two and ADHD when she was 38. But before her diagnosis, she'd spent most of her life not understanding why she didn't quite fit in. Like Lizzy, she had a pretty shit time at school.

Pippa: I remember sitting in a group of three or four girls eating lunch and them all chatting and me just feeling like, I'm not sure what to say here. There was a lot of work that had to go into keeping up with girls around me and not feeling like I was too different or because I was not cool or because I had different interests or because I didn't get what was going on or because I didn't like going to parties.

Grace: Yeah. Did you feel like you had more success with more active friendships that weren't necessarily like talking based?

Pippa: Yeah. At high school in particular, my closest friendships were with the people that I could play music with. It was its own little bubble and it was safe.

Grace: Literally in tune.

Pippa: Yeah.

Grace: Literally in tune with them.

Pippa: And everything else outside. It was just a little bit scary. We had a bank of like piano rooms and I would just go and I would sit on the floor, close the curtains, eat my lunch and play piano for the 45 minutes of lunch break.

Grace: Yeah. For me in year 11 and 12, it was the art room. Same thing. Just going to the art room with a couple of my friends and we would just all draw and listen to Black Sabbath.

Pippa: Yeah. That's amazing.

Grace: Beyond those safe friends and activities, Pippa never really felt like she could be herself. She tried so hard to fit in that she dialed different parts of herself up or down in almost every social situation. And this carried on into her adult life.

Pippa: I'll change myself to fit in and to a work context. I'm very arty around the arty people and I'm very academic around the academic people. You're just constantly reshaping yourself into different moulds in order to fit.

Emma: Because Pippa had been masking in every part of her life, she lost her sense of who she was. She did what she thought she was meant to do. Go to uni, get a job, marry a man young and have babies.

Pippa: The masking and moulding and fitting in came a little bit more innately to me because I was trying so hard to fit in and I was reading the room so deeply to at times my detriment, but in some ways to my benefit because I didn't stick out as much as I might have otherwise. But during motherhood, things started to unravel. Why was this so much harder than it was for everybody else around us? Why can't everyone else seem to function XYZ? Why can't my child sit and have a family dinner? Why won't he just go to school? Why can't I just go to work the same as everybody else and get through the day and not have, you know, the repercussions of doing that intense exhaustion and needing to bury myself in bed?

Lizzy: I think it cost me myself and my ability to truly connect with the present moment.

Grace: Lizzy is coming out of her two year burnout and wants to get back to working as an OT in Melbourne. While she's making plans and genuinely excited about the future, she's learning to put herself first.

Lizzy: It has taken so long for me to get to this point and it's been so hard, like ripping off all these layers of who I thought I was. Like it felt excruciating, but I was like, oh, no, it's me. Like it's, it's, it was really painful, really hard. But finally I was able to accept like, oh, this is me. And it always has been.

Emma: As Lizzy learns to love herself, she's decided dating can wait. In the past, she lost herself in relationships.

Lizzy: I think staying too long and not, not realising that I didn't want to be there or that my body didn't want to be there. And subverting my own needs for the other person, wanting to help them. I think I have a big history, I guess you could say, of like being like the therapy girlfriend.

Emma: Lizzy has had a few relationships that hurt her deeply.

Lizzy: I can really see how autistic people, particularly like autistic women, can end up in situations that are unhealthy, toxic, abusive. I think because that over-empathising with the other person and the impact of masking and like interoception challenges and like difficulties connecting into your own body. It's so hard to realise that it's OK to leave.

Grace: You've said that you're actually very social, but the cost of socialisation can be enormous. What do you mean by that?

Lizzy: How I think in my head that like the life that I want to lead is I'm going to live in a cave for the rest of my life so I don't have to interact with anyone. And then I realise, hang on a minute, I like interacting with people. Generally, I feel better after I do it.

Grace: Right.

Lizzy: But what is it that makes it so difficult? And I realise, oh, that's like, it's autism.

Emma: I guess it's about striking that balance between the positive aspects of socialising as an autistic person and then the costs that we often wear.

Lizzy: And it's like it's such a simple thing of recognising, yeah, you're probably like your sensory needs, like you needed to go home earlier. Like you were just overstimulated.

Emma: One of the reasons Lizzy gets overstimulated is that she has sensory sensitivities, which can make socialising exhausting. But it's not just what is happening in the moment that takes a toll. A few hours out for dinner in a noisy, brightly lit venue can impact your whole body and mind and leave you feeling socially hungover well into the next day. But Lizzy has come up with a few tricks to stop her from overdoing it.

Lizzy: I have some friends where we try and set timers.

Grace: Oh, that's great.

Lizzy: Yeah, because we know like even though we're having fun, like even fun things are tiring, which sucks.

Grace: It's a hard lesson to learn. Can you share a recent story where you were with friends who really got you and understood your needs without any judgement?

Lizzy: So I love astrology, specifically traditional Hellenistic astrology, but that's my autism.

Grace: No judgement here.

Lizzy: Great. So I have a group of friends who are interested in that topic. And whenever there's a significant transit, we get together and we make PowerPoints for each other. And I felt like I could wiggle and lie down and avoid eye contact and not talk.

Grace: That's beautiful.

Lizzy: Yeah. Yeah. I'm yeah, I'm really grateful for those friends and understanding that. And I brought along some fidget toys and everyone was really excited. Like, I want that one. I want that one. Like, yeah, just sharing it was really nice.

Grace: How have some of your new friendships been different from earlier ones that you had in your childhood?

Lizzy: I think because they've met me during burnout. So. I had nothing to give. I don't know if it's the friendship, if it's them that's different. I think it's me showing up differently and feeling more accepting of myself and my needs that it just feels easier to be myself. And then maybe the friendships feel more accepting.

Grace: Even though Lizzy is finding her people, Dr. Jac says there is still a lingering stereotype that autistic people aren't social.

Dr Jac: The perception that autistic people aren't interested in social relationships is based in just a really narrow and specific idea of what it looks like to be a social person and to value social connection. So that doesn't necessarily mean that we're not social beings. But with a caveat, because autistic people are, you know, we're a diverse bunch like any other community.

Grace: It's like introverts versus extroverts. We talk about them as if they're fixed. But really, it's a spectrum. You can fall anywhere along that scale. And the same idea applies to autistic people.

Dr Jac: There are also a huge group of autistic people who are super interested in socialising and having relationships and not just interested, but for who that is like a really, really crucial, really important part of having a good life. It can be difficult, I think, when your approach to socialising and relationships doesn't look like what other people might expect.

Grace: Even if you are socially motivated, maintaining relationships still means showing up, being places and doing things. Dr. Jack's recent work looks at autism as a dynamic disability.

Dr Jac: So the idea that we have kind of these really fluctuating patterns of ability and capacity can look really different for different people. For some people, it might be being able to deliver training to a huge group of people on one day and the next day not even being able to speak or get out of bed. Just because I could do something yesterday doesn't necessarily mean that I'm going to be able to do it tomorrow. It's such a complex thing. But I think it's a really important thing to try and get some understanding on.

Grace: Oh, I totally agree. And in the interest of simplifying things, because as you said, this is very complicated and dynamic. Can you tell me about the origins of the spoon theory and how some autistic people use this to explain themselves and their capacity to friends and families?

Dr Jac: Yeah, absolutely. I love spoon theory. So it's a theory that actually came out of the chronic illness community.

Grace: The spoon theory was developed by a woman called Christine Miserandino. Sitting in a cafe one day with a friend, she tried to explain the use of her finite energy levels. The only thing she had at hand were teaspoons.

Dr Jac: So she grabbed a bunch of the spoons and every activity that she did throughout the day would cost her a spoon or would maybe cost her two spoons or three spoons, depending on how demanding that activity was.

Grace: Christine explained the idea by using each spoon as one unit of energy.

Dr Jac: By the time she finishes work and is coming home in the evening, she's out of spoons. But if you're out of spoons, too bad. That's it, you have to rest. Go to bed. And I think that's it can be a really concrete way to explain to people the complexity of juggling daily life when you have to factor in this really finite amount of energy and capacity that you've got. There's this constant process of making decisions. Juggling spoons. Juggling spoons, exactly. Because if I push through when I'm out of spoons, that's how I get to shut down or melt down or burn out. And then I'm not just out for the night, then I might be out for a week or months.

Pippa: I'd always hit this point where my battery would run dry and I would just need to get out of there.

Grace: Pippa's whole family is neurodivergent, including her two boys, who are now 11 and 14. And Pippa and her wife, Hannah, often use the spoon theory to let each other know where they're at.

Pippa: I basically will go to the office for a day, come home and go straight to bed. And she takes care of dinner and clean up and whatever else needs to happen so that I can just recharge my spoons because I learned that going to the office was a big use of spoons.

Grace: After her diagnosis, Pippa realised how being in an office impacts her body and mind. Now she mostly works from home.

Pippa: To spend a day in an office with fluorescent lighting, fully open plans, there's no offices and the noise is just constant. You know, I always struggled with these things and it wasn't until my diagnosis that I realised the full extent of what that was actually doing to my body, my brain, my capacity.

Grace: Pippa gets how her brain and body works now and makes better decisions because of it.

Pippa: It's not always like everyone's needs aren't met all the time and we have challenges, but we carry ourselves through our lives as a family with a really high degree of empathy.

Grace: This was put to the test recently when the whole family went to a concert.

Pippa: How would we manage if somebody was overwhelmed? Would we take headphones? Oh, look, here's the sensory room. We're going to all figure out how to get from our seats to the sensory room and back again and what food options are there? And all of this happened in the months and weeks and days leading up to the show so that by the time we got there, everyone knew exactly what to do.

Grace: Pippa is proud of her neuroaffirming family bubble and she embraces her identity as a way to connect with others.

Pippa: I think I'm a little bit more willing to just tell people I'm autistic. I love that. And as I've become more comfortable with the identity,

Pippa: I'm a lot more willing now to just joke and say, yeah, it's the ‘tism rizz, you know, like.

Grace: The ‘tism rizz. This is my first experience of this term.

Pippa: Really?

Grace: Yes. The ‘tism rizz.

Pippa: This is how I am and that's OK. Get on board or don't. Whereas before, I think I'd turn myself upside down trying to just make myself into somebody who was likeable to absolutely everybody I met.

Grace: Like most parents, Pippa's in a million WatsApp groups. But one particular group affectionately known as the expert advisory panel is close to her heart as nearly everyone in it is neurodivergent.

Pippa: They've helped me through the hardest times with my kids and given me the greatest advice and support and joy. And, you know, we actually only catch up in person maybe three or four times a year because we all got pretty limited social capacity and we all have jobs and families. But that chat goes off every day, you know?

Grace: Yeah. And when you do see each other, you make it count.

Pippa: 100 percent. And they just have this. It's just that immediate understanding. You don't have to worry about being too weird. It's just incredibly easy and natural and unquestioned.

Dr Jac: We need to focus on things that are going to make a difference to people's lives, things that are going to improve the lives of autistic people.

Grace: This is Dr. Jac again. They were part of a research team that looked at what makes a good life for autistic people.

Dr Jac: There's so much more that we need to understand.

Grace: If you could pick one factor, just one, that you think all autistic children, parents and adults want, what would it be?

Dr Jac: That's an easy one.

Grace: Good.

Dr Jac: Yes. Acceptance that you cannot live your best life if you're not accepted by the people around you.

Grace: Like me, Dr. Jac, Pippa and Lizzy just want to be accepted for who they are and always have been. If everyone was just a little more curious and ready to embrace each other's differences, we'd get along just fine. Well, for the most part.

Grace: In the next episode of Autistic AF with Grace Tame, that's me, we look at why autistic women and gender diverse people have much poorer health outcomes and meet incredible women like Chloe Hayden, who are kicking goals regardless.

Grace: This podcast was made on the lands of the Gadigal and Dharawal people. It's mixed by Ann-Marie de Bettencor, produced by Emma Morris and our executive producers are Tamar Cranswick and Alex Lollback. The series was created by Emma Morris.