Autistic Girls: Misdiagnosis, Masking, and Breaking Stereotypes

Dr Marianne Trent (: 00:00

Why are so many autistic females overlooked, misdiagnosed, or diagnosed too late Today, we are uncovering the hidden stories behind any statistics, exploring the unique ways autism presents in girls, and why traditional frameworks often fail them. If you've ever wondered how masking stereotypes and societal expectations impact autistic girls, then stay tuned because this conversation is essential. Hi, welcome along to the Aspiring Psychologist Podcast. I am Dr. Marianne and I'm a qualified clinical psychologist. Now, today we are meeting someone who works as an assistant psychologist and who has a sister who is autistic herself and was diagnosed later than would've been ideal for her. Let's dive straight in, but please, if you do find this content helpful, please do like please do, comment. It is the kindest thing you can do for any podcaster. And please feel free to share the episode with people as well, perhaps with your colleagues, perhaps with your friends, perhaps with your family, whether that is a YouTube episode or the MP three version too, you find it so useful and I will look forward to catching up with you on the other side. Hi, just want to welcome along our guest for today, Hannah, who is an assistant psychologist. Hi Hannah.

Hannah (: 01:23

Hi Marianne. Thank you so much for having me.

Dr Marianne Trent (: 01:25

Oh, well, thank you for being here, and thank you for pitching your episode to me as well. So this is a course close to your heart, but you really wanted us to open up the narrative around autistic spectrum disorder diagnoses or autistic spectrum condition diagnosis specifically in females and how that might look different for females compared to males, or let's open this up to genders rather than necessarily pigeonholing them. But your experience is that your sister has a diagnosis of autism, and so you've kind of learned quite a lot about those differences, really, haven't you, Hannah?

Hannah (: 02:08

Absolutely, yes. And it's very apparent that both within society and within the world of psychology, there is this stereotyping of what autism should look like, and it's based upon a lot of research with mostly male participants. So there's been quite a huge lack of understanding of how autism actually presents in girls or people who are not male.

Dr Marianne Trent (: 02:30

Yeah, absolutely. And a book that I was recently involved with called an autistic anthology is looking at mental health professionals who have an autism diagnosis or who understand themselves to fit within an autism framework. And actually I would say the majority of the people in that book are female, which I think it shows us that we're moving in a very informed direction. Certainly very different than when I was an aspiring psychologist and I was doing some reading around the topic when I was a trainee, and the book Asper Girls by Rudy Simone is a really, really interesting read. But being able to share that knowledge with parents in CAMS services, it was really powerful actually, and really helped the validation and to know how to optimally support either yourself to thrive or someone in your family, in your work group, in your friendship circle. It's a really, really important conversation to have. Hannah.

Hannah (: 03:41

Absolutely, definitely. And I think some of the very real problems with that stereotyping is focused on those diagnostic problems. So there's a massive under diagnosis where boys are currently four times more likely to receive a diagnosis than girls. And around 80% of autistic girls are first misdiagnosed with things such as anxiety or personality disorders, depression, A DHD, things that aren't quite exactly what they're struggling with. So they don't receive that support in the correct time. And that of course leads to late diagnosis, which is a huge problem because girls are getting diagnosed in their teens or even into adulthood, whereas boys are on average diagnosed around age five. So there are very real impacts of that stereotyping and that lack of knowledge that we need to address really.

Dr Marianne Trent (: 04:31

Absolutely. And if people are like, oh, why would they be getting alternate diagnosis? Just to speak to that point, really, it's that people who have difficulties that fit within an autism spectrum diagnosis really might struggle with a number of areas. For example, they're more likely to end up with depression, with anxiety, more likely to sometimes drink more alcohol units than someone who doesn't have those difficulties. And so it's those years of trying to fit yourself into environments that aren't necessarily helping to fit around you. You are having to do all of that, amending all of that amelioration, which is very, very difficult and can lead to symptoms of autistic burnout as well. So that might help people understand why people are ending up with other diagnoses when in actual fact, like you say, if they've been understood within that framework, within that lens and helped to understand themselves from a much younger age, perhaps like their male counterparts, just how much of an opportunity that would've been for them.

Hannah (: 05:49

Absolutely, and I think it's very important to talk about autistic masking because it is seen to be more prevalent in girls. So we think about what messages are these young girls receiving from society that they have to change or hide parts of themselves in order to fit in and be accepted, and then the impacts that that's then having on their mental health as well. So without being diagnosed there, they're receiving this message that it's not okay to be who they are, and there's so much trauma associated with that. So I like to think of masking as a trauma response because responding to these very negative messages that they're receiving about who they are and whether or not that's okay. And I think as a society, we really need to work to overcome this because it's not okay that these children are receiving these messages around what they should or shouldn't be like, and that they feel as though they can't just be who they are.

(: 06:42

I can speak from experience that when my sister was diagnosed, the difference between her presentation before diagnosis compared to ASCA after because she was able to unmask, she was almost a completely different person the way that she spoke, her tone, the way that she used language, the fact that she was able to start stemming and these were behaviours that we hadn't seen before. It's masking can have such a huge impact, and it takes up so much energy and so much time, and it does lead to burnout. And then you have all of the trauma associated with that, which then could lead to things like emotionally unstable personality disorder, which is a trauma driven disorder. And then you have lots of comorbidities that come into play, and it's a huge conversation definitely to be had around masking and the impacts of that and what messages are we as a society giving to members of the autistic community.

Dr Marianne Trent (: 07:39

Yeah, absolutely. And I think it's probably worth us saying in case anyone is unsure, your sister's given us permission to talk about her. We're not naming her, we're not using her photos, but we're talking about your experiences of being her sister and kind of helping to advocate, but also helping others to understand what autism is and how that looks in girls. So yes, thank you to your sister as well.

Hannah (: 08:04

Absolutely. Some of the main differences that I see in my sister compared to what the stereotypical view of autism is would be over compliance, the being labelled as quiet, shy and selectively mute, having lots of anxiety and masking. These are traits that I associate as being part of that female autism narrative, which are often left out of the primary conversation around what autism should look like. And these are traits that need to be recognised and spoke about more. I think.

Dr Marianne Trent (: 08:37

So people might be watching this video for all kinds of reasons actually. We might be reaching people themselves that are wondering whether they might be able to understand themselves or pursue diagnosis. We may be reaching parents of people who are starting to have questions around their children or maybe sometimes their siblings or their parents. There's many reasons why someone might have stumbled across this episode either on YouTube or as an MP three. But if someone, for example, understands their child to be female and they're trying to parent them, but are starting to notice maybe in school they're not thriving in the way that they think they are capable of doing, maybe there's masking going on, maybe when they're getting home, they're really having a strong emotional fallout from exhaustion. What kind of things might teachers be seeing? What kind of things might parents be seeing at the other end? Could you talk us through that a little bit, Hannah?

Hannah (: 09:41

Absolutely. So during school it's quite typical to mask and they might then want to hide at the back of the class. They might be quite quiet. The typical thing teachers would say is that they're a delight to teach, but they need to speak up more. And then when they get home, all of that changes. They unmask, maybe they're a bit louder at home and family members can't understand why then they're not speaking so much at school and they seem so dysregulated and disrupted. Or they might just retreat into the room and have the opposite effect where they almost retreat into themselves and they're just quiet and they can just sit with themselves and almost recover from everything that they've had to go through that day just to try and present normally, which is something that they shouldn't even have to do.

Dr Marianne Trent (: 10:30

Yeah, absolutely. And often when we're working with parents or even adults who are around people with autism, it is thinking about, well, actually it's really wonderful that you've created such a lovely home where they're able to really be themselves and to feel comfortable to kind of do that unmasking and maybe show some of their frustrations. Maybe they've been keeping a lid on it all day, but actually as soon as they get home, their kind of window of tolerance is that much more reduced, that they're going to be more reactive. And I know that's really tricky to think about that as a strength because parents are like, well, all of their people at school are getting the best of them, and I'm just getting the burn ends. But actually, I guess it's empowering people to be able to perhaps think about being a more consistent self across the settings and whether that feels okay. And we're certainly trying to educate the world that is okay, maybe masking isn't needed all of the time.

Hannah (: 11:39

Absolutely, yes. When they're able to unmask, it's when they feel most comfortable. So the fact that they can do that at home is obviously a strength. It means that they're comfortable and the parents have created a compassionate enough environment that they feel able do that. So it's definitely a strength. The only disadvantage then is the fact that they're not able to do that outside of the home or at school. And that's more to do with the way society perceives autism. I feel once people have the diagnosis, there's a lot more understanding and compassion towards these behaviours, and it's a bit more acceptable to act in certain ways. So prior to diagnosis, masking can definitely feel a lot more, I guess the individual will feel that they need to do that more in order to fit in if they don't understand why they're different and that can feel very overwhelming. And just being there to support them through that and through unpicking some of these negative narratives that they have about themselves and understanding why those exist. And it's not their fault that they're being told that they shouldn't be who they are. It's absolutely not their fault. And understanding that that's not a narrative that we we're going to support.

Dr Marianne Trent (: 12:51

Yeah. Can I ask how old your sister was when she was diagnosed?

Hannah (: 12:54

Yeah, so she was 13, so she was late diagnosed, and prior to that she had been diagnosed with anxiety and selective mutism. So the fact that mental health professionals were recognising something is wrong selectively means she is anxious, but they're not referring her for a diagnosis. It's so common for these things to be missed and for misdiagnosis to occur. So it makes me quite angry, to be honest, that mental health professionals are not recognising that these are symptoms of autism in girls and that we need to be referring more girls for diagnosis sooner rather than waiting until they reach burnout or that they physically can't cope. Because it got to the stage where my sister was really, really struggling in school and something really needed to be put in place, and the impacts of that late diagnosis meant that she was not able to transition to a specialist school because she did not have that label, even though the mainstream environment was not appropriate for her, she was struggling and she wasn't able to keep up. And one of the things she developed was school avoidance because it's just such a traumatic environment to be in as a neurodiverse person. So the fact that she was kind of forced into that environment because she was diagnosed with an inappropriate label, it just demonstrates why it's so important to recognise these things sooner rather than later.

Dr Marianne Trent (: 14:12

Yeah, absolutely. And when I was working in cams, what you'd often see is things went really well in primary school, but then when you get to moving into year seven, suddenly you've got to have more accountability. You've got to kind of navigate yourself. The environments often tend to be a lot noisier. You are having to remember to take all of your different bits and pieces on different days. You're having to cope around sometimes much bigger, taller people. There's lots of jostling. The corridors are really busy. Sometimes it really starts to become apparent that actually the wheels almost begin to fall off at year seven and beyond. And that can be almost really difficult because the teachers perhaps have grown up with the child from being age four and have grown with them perhaps in the same school and have really understood how to help get the best out of this young person.

(: 15:11

And then they go to secondary school and you don't have any of that. You're starting from scratch, and perhaps there's less consideration, there's less adjustment. You are having to just run with what the generic provision is. And before you know it, it's a really difficult environment to be in. And I'm again reflecting on my time working in cams, but people would kind of start to, like you say, to start to school, avoid, start to really struggle. If they needed to go and speak to a teacher about something that would feel like a really, really impossible thing to do and would be so practised and rehearsed and made to be this really, really big thing that felt impossible. It felt like trying to climb a mountain in just with the wrong equipment and sometimes ended in self-harm and ended in inpatient admission. And at that point we'd be like, oh, I wonder if actually you've ever considered whether your daughter or yourself might be autistic, and then the diagnosis might happen. But what are the opportunities if this happens, like you say at such a younger age that we miss out all of that distress?

Hannah (: 16:33

Absolutely. And this is one of the reasons why the self-harm and suicide rates are so high for members of the autistic community. One study that I came across suggested that people with autism were seven times more likely to die by suicide than the general population. And that is a huge, huge difference. It's so disheartening to realise what is happening to these people, and it's not their fault and it's something that shouldn't be happening. Given the advancements that we've had in mental health research, this is something that really should have been tackled. This is something that mental health professionals should know about, and the fact that it's leading to things such as suicide, and these are children we are talking about as well, not just adults, it's definitely something that we need to be talking more about and fostering more compassion towards.

Dr Marianne Trent (: 17:25

Yeah, really it matters and they're important conversations to have, and every life, every person matters. Can I ask how old your sister is currently?

Hannah (: 17:34

She's 17 now.

Dr Marianne Trent (: 17:35

So typically at age 17, someone would be in sixth form. They've come out the other side of their GCSEs. Is that the case for your sister?

Hannah (: 17:46

No. So as I mentioned, my sister was transitioned to a mainstream high school that she struggled with, and then we managed to move her to specialist school once she had her diagnosis. But because of all the trauma she experienced through the mainstream school, she was still avoiding, she was still unable to cope even in a specialist school. So she was transitioned then to homeschooling. And she still finds even that even being around one person who's unfamiliar in an environment that she's familiar with, it's still very overwhelming for her. So she's being homeschooled, but she is not going for any exams at the moment because that would just be a bit much. So we've delayed a year. She would be taking her exams this summer, so we've delayed that at the moment. That's not something that we are considering because it's not something that's appropriate for her, but she is persisting with education in other ways.

(: 18:42

So one of my sister's strengths is that she's amazing with animals and she really, really enjoys horse riding. So she goes several times a week and she's learning also stable management. So she's learning how to take care of horses, how to clean them, how to feed them, and she's amazing. She could look at a horse, tell you exactly what breed and the name of its coats and what food it needs to eat absolutely everything just by looking at it. She's amazing with that. So this is an alternative avenue that we're exploring that's much more appropriate for her. And I think that's something that's important when you are educating people with autism that the mainstream and the typical way of sitting exams might not actually be appropriate, and that's okay. It's fine to find something that works for them because chances are that they might not actually be able to work in the traditional sense anyway, because that in my sister's case anyway, that would be too overwhelming for her to cope with. So something where she can work with animals and her favourite being horses, and she loves also she farm animals. Really that's being able to explore that in a much more flexible sense is amazing. And it's great that after the almost traumatic journey that she's been through of education, that she's now at a stage where she can really focus on something she's interested in and she can just pursue that. Yeah,

Dr Marianne Trent (: 20:10

I love that. That's so nice. And actually there, there's lots of kind of literature and experiences and case studies about equine therapy and actually how helpful that can be. So maybe that's part of her healing as well as part of what lights her up.

Hannah (: 20:27

Absolutely. And to see the difference when she's on a horse. So my sister is selectively mute, so normally she won't talk if we're out in the community or around people she's not familiar with. She tries to sign, but sometimes signing can be overwhelming as well. She doesn't like to feel observed, so that can be difficult. But when she's on a horse, she will go out on hacks and things and she will signal to traffic, and that's absolutely amazing. She's able to signal and to communicate to cars and people she doesn't know, but if she's not on a horse, it's too much and it's not something she's able to do. But to see that difference and knowing that she has these skills, it's just what context is she able to use them in? It's absolutely amazing. It really is.

Dr Marianne Trent (: 21:14

Yeah, it really is. And I guess it's making her think about wanting to protect that horse and for that horse to be respected and given the room that it needs and not have the traffic be too noisy or too fast, and it's really helping her to be assertive for herself, but for the horse as well.

Hannah (: 21:35

Absolutely. And that's something I think the impact of animals for people with autism as a therapeutic thing is absolutely amazing, and it's definitely a strength. And if you are supporting someone with autism, thinking about whether it's appropriate, something that they can do and engaging with animals might be beneficial to them.

Dr Marianne Trent (: 22:01

We haven't got time for it today, but we are going to get together for a future episode. Thinking about the theoretical frameworks for autism, could you briefly just tell us what those are that people might hear about?

Hannah (: 22:15

Absolutely. So if you're working in an LD service or if you're working with people with autism, you might hear a lot about positive behaviour support. This is looking at the meaning behind mostly challenging behaviours. So why do they occur? What are they trying to communicate? Because often it is a method of communication, and how then do we support them to get what they need without the need to be challenging or to self-harm? It contrasts directly with applied behavioural analysis, which is almost the opposite. It looks at trying to use positive reinforcement and punishment methods to reduce challenging behaviours, and it's completely ignorant of what the meanings could be. So PBS was developed from a b, A to kind of overcome some of these issues, and it's a much more compassionate view. It's normally used in combination with trauma-informed care, which is very, very important when we're working with neurodiverse people because it helps you to look at all of the trauma associated with going through a world that's not designed for you and all of the problems that you will face because of that. And it's very, very important to keep these things in mind when working or talking with someone who is neurodiverse. So that's kind of the brief overview that I can give on what those techniques are. I hope that's,

Dr Marianne Trent (: 23:30

Thank you. Yeah, it does. And we will come back to it in future, but you are clearly so knowledgeable. You've clearly spent a lot of time learning about these things so that you can optimally help your sister, but probably optimally help your clients in services that you are working with as well. Which area, which population are you working with as an AP currently?

Hannah (: 23:52

So I am working two part-time AP roles, so I work within cams with children, and then I also work within an adult LD service. Within that role, I go to social care homes and I help support both clients and staff who might be experiencing issues with how do you support someone with a learning disability or with autism, and trying to foster that compassionate approach and work through some of those more systemic problems and within the social care system. And how do we support those people within that kind of environment?

Dr Marianne Trent (: 24:25

Well, I'd say they've definitely got the right person for that job. You feel like a really safe pair of hands, really, but also nice compassionate hands that you'd want someone to be working with, someone that you care about as well. So well done to you. I hope that whether it's your time to apply to doctorates now or in the future that you have really rich, well-deserved success there.

Hannah (: 24:57

Thank you so much. I think it's so important to foster compassion, not just towards the autistic community, but towards everyone. There's so many differences between people, but it's important to just be compassionate, and that's what psychology aims to do, to care for others. And I don't think you'd be in this field if you didn't want to help people. So looking as much as you can from that compassionate point of view, that's what I really try to do with everything. And if there's one message that I can leave your listeners with, it would just be to try and be as compassionate as possible.

Dr Marianne Trent (: 25:31

Absolutely. And my new website for aspiring psychologists will have launched by the time this episode goes out, but in my About Me section I think it is, it's kind of saying actually how important compassion is. And even if you never buy a book, if you never listen to a podcast episode by me, please, please embrace, embrace compassion and compassion focused therapy and for yourself and those that you are with because it is life changing.

Hannah (: 26:00

Absolutely.

Dr Marianne Trent (: 26:01

Thank you so much for your time, Hannah, and for pitching this episode to me. Hope it's been okay. We will get a date booked in for that next episode. Thank you so much. It's been a really, really invigorating, useful conversation.

Hannah (: 26:16

That's great. Thank you so much for having me.

Dr Marianne Trent (: 26:18

Oh, you're so welcome. Thank you for coming. Oh, thank you so much for our guest today, Hannah. She just blew me away with her insight, her passion, her preparedness. What a great episode. What a great guest. So thank you, Hannah, and I'm hopeful for you for whatever your career brings. Next, would you like to pitch me an episode for the Aspiring Psychologist Podcast? Please do come and connect with me on socials. That's the easiest place to pitch me your episodes. Hannah pitched me via LinkedIn. Why don't you do the same? I'm Dr. Marianne Trent everywhere. If you're looking for some inspiration on how to reflect, perhaps how to see yourself as an autistic mental health professional, please do check out an autistic anthology, which is a book that was published in November, 2024. Or, of course, for more general experiences of clinical psychology, check out the Aspiring Psychologist Collective and the Clinical Psychologist collective too.

(: 27:25

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Jingle Guy (: 28:47

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