Women and autism

What is it like to be diagnosed with autism later on in your adult life? Two women describe their experience with autism, from misdiagnosis to social expectations and camouflaging. We are also joined by Dr Laura Checkley, who works in the City and Hackney Autism Service.

For more information, please take a look at our resources on autism.

Transcript

Ella Marchant: Hello, and welcome to the Royal College of Psychiatrists podcast with me Ella Marchant. Misconceptions surrounding autism have led to an astounding gender diagnosis gap, where women aren't being given an autism diagnosis until much later in their adult life. Autism diagnosis in women and girls can be overlooked. This could be due to various reasons, but many believe it's the inherent gender stereotypes still held onto even in medicine.

Women are often expected to be more social and accommodating so conditions like autism aren't always identified and can be mislabeled as anxiety or depression. On the podcast, we have Dr Laura Checkley a consultant psychiatrist working in the City and Hackney Autism Service and in the Hackney Integrated Learning Disability Service. We are joined by two women that Laura diagnosed with autism, this is Anna and Christina. Together, we discuss rules and expectations, damaging stereotypes, and how a diagnosis can truly change a person's relationship with themselves.

Today, we want to talk about the gender diagnosis gap in autism. Laura, could you explain to us a little more about how you think this has happened?

Laura Checkley: Yes, sure. I am a consultant psychiatrist in an autism service, which does autism diagnostic assessments for adults. Obviously, we see an awful lot of women who were never diagnosed with autism as children and I think one of the reasons is that it's often less obvious in girls when they're at school. They might be quiet or very well behaved, so it's simply not picked up on at a young age.

Women and girls are also better at learning social skills. They will learn to mimic and copy others and to mask their difficulties. They're also more aware often than boys are, of the need to socially interact. Also, girls may well have special interests which are more socially acceptable or normal. Things like art or reading, and they might spend a lot of time doing those things. I think also there is a lack of knowledge quite often in how autism does present differently in women and girls.

Ella: Just building on what you said there, autism can really manifest itself, show itself in different ways between the genders. What are the signs that you often see in women and girls?

Laura: Women and girls are better at learning the skills required for social interaction and they might do so by copying others or mimicking behaviour. They may also learn to use certain stock phrases. Things for example like they might learn that people like it when you compliment them. For example, they might compliment someone on their shoes and say,

"Oh, I really like your shoes," or they may build on that and say, "Oh, I really like your shoes. Where are they from?" Because they learned that that's going to elicit a favourable response from the other person.

They are also better at learning to make eye contact, even if it doesn't come naturally to them. I've had women tell me that they have just taught themselves, that they look at the other person's nose when they speak to them. They have also often learned that it helps to smile. Again, that gets a favourable response from the other person, if you smile a lot when you speak to them.

Women are good at learning techniques to make conversation. They might, for example, learn to ask questions of the other person, and they know that will get the conversation going. Women often tell me that they've learned that other people really enjoy talking about themselves, so they'll ask questions about the other person. They might use tricks like remembering things about the other person and bringing them up again in a later conversation. Women, in particular, can be really, really good at doing this.

When we diagnose women, we sometimes get told later that their friends have said, "Oh, but you don't look autistic." That's because they've learned or taught themselves the skills to socially interact. Of course, this does come with a cost that if this isn't completely natural, that many women tell me it's absolutely exhausting to do this.

Ella: That's really interesting, thank you so much. There are quite a lot of social expectations put upon women to over-perform socially and be overly affectionate in general.

Laura: Yes, absolutely. Autistic women can find that quite difficult.

Ella: How has working with women with autism changed your perspective on the world and how do you see it now?

Laura: I've learned so much from the service users in our autism service and many of them have absolutely amazing stories to tell. Of course, we've got two women here today on the podcast who I did previously diagnose as adults as having autism. I really thoroughly enjoy my work in the autism service, and also the educational role in running events for doctors and helping run events for other health and social care staff in the trust and the local authority.

Most of these events we have co-produced them with service users. The feedback we get from every single one of these events is that the bit that people enjoy the most and they learn the most from is hearing real-life stories on what it's like to be diagnosed with autism as an adult. I'm really looking forward to hearing what Christina and Anna both have to say today.

Ella: Perfect. We're going to move on to Anna and Christine now. Anna, could you tell us a little bit about when you were diagnosed and did it change the way you felt about yourself and your past?

Anna: Yes, sure. I was diagnosed by Laura at the age of, I think 32, a year ago, 32. It was absolutely huge for me. Really made a big difference to my life in general. I sought the diagnosis at the end of the line of a lot of mental health issues. I'd been to various people within the medical profession and been diagnosed with various things including depression, anxiety. It was only at the age of 32 that I and my partner suspected autism and did a bit of research and thought, "Yes, that definitely seems like the case, " and then sought a diagnosis then.

Ella: Christina, could you tell us a little bit about when you were diagnosed, and did it change the way you felt about yourself and your past?

Christina: I was diagnosed two years ago again by Laura at the age of 65. It certainly felt that it changed the way I felt about myself and my past. I had thought about getting an assessment for about 15 years prior to my assessment but I'd never discussed it with anyone. I thought that I couldn't possibly be autistic. When I got my diagnosis, I initially felt totally overwhelmed, shocked, and very distressed. I'd thought that I would be told that I didn't have autism and that my difficulties were due to personality and mental health issues that had never previously been resolved because I was always described as a difficult patient, did not try hard enough, et cetera, et cetera.

There'd always been a chink inside that had never quite accepted this and that was why I sought the initial diagnosis. I could not understand when I did get the diagnosis why I felt so distressed, why I did not feel relieved. However, after two years, I've now begun to feel some relief and some acceptance and that everything that has been negative in my past was not my fault. I wasn't that difficult patient or someone who didn't try hard enough. It has led to me accepting myself more, and it's also helped me to understand so many things in my life.

So many things are falling into place. I have a huge need for explanations and reasons for everything and when I couldn't find all of that through mental health services, I felt very lost. I also know now why I have felt constantly exhausted throughout my life and I've only just begun to understand that.

Ella: When Laura was talking about feeling exhausted from social interactions and trying to interpret the world, was that something that felt very familiar?

Christina: Well, I didn't realise that because I didn't realise that I was - It's very difficult to explain. I knew I was different, but I didn't realise that I was trying to make myself like everyone else or that life was a constant daily struggle. I certainly had never heard of the term masking or camouflaging, I didn't know anything about that whatsoever, but looking back, I can see that's what I've done throughout my life.

I work, I've been working for the last 20 years having spent a long time within mental health services, but it has been exhausting to keep my job and maintain my job and move up the career ladder. Now, I have some understanding of it. I've had to keep the negative aspects of myself as much as I can from other people and make myself appear like them. Even though people will at some point possibly assort me odd or different, I've still constantly tried. I think that's where the exhaustion comes from.

Ella: When you're talking there about masking and camouflaging, are those terms used within autism?

Christina: They are, but they're terms that I've only just got to know anything about. To understand that little girls at school, they try to be like everyone else. They try to play with other children and learn from other people in a way that boys don't necessarily do. For example, I've been in the teaching professional for the last 20 years and I did go up the career ladder a little bit.

I got to the point where I absolutely had to go to school discos and things like that, but I knew that I couldn't cope there. I might cope with them, but my way of coping I now realise was that I was always the person on the door. I was always the person that made tea or did refreshments or whatever. I was never the person that had to socialise with parents and so on in a social situation like that.

Ella: Anna, do you think people associate autism with being something only men have. Do you think this has been damaging for women with autism?

Anna: Yes, absolutely to both points. Christina has highlighted really really well, the difficulties with masking and camouflaging and that, because women with autism are pretty good at doing that. They don't receive that diagnosis because most of what people know is to do with a fairly stereotypical male picture, this is why a lot of women weren't diagnosed later.

For me, I didn't even consider that I might possibly be autistic, until maybe late 20s. Even when I thought possibly and looked into it because my cousin was diagnosed, I read what I could find online and thought, no, that's not me. It's only when you really dig in further and specifically research women with autism that you see a closer picture.

Ella: Your cousin who was diagnosed were they male or female?

Anna: Female, interestingly enough.

Ella: Did that trigger you to look into it a little bit further?

Anna: It did. I'm not hugely close with her, so we spoke about it briefly and then I went away and looked into it. Because some of the things she was saying, I was thinking, "I experience that too, that's interesting." It still took a long time and a lot more examples of women with autism later for me to think, "No, that is definitely me."

Ella: Christina, going to you now. What is your favourite thing about having autism?

Christina: I think my favourite things are being able to relate well to children, and my attention to detail. Both of those have enabled me to pursue a career that I've loved, even though that happened later in my life. I think special interests too have also got me through difficult times in life. Although at the time I thought I was odd to have such interests.

I didn't know that it had anything to do with autism and I kept them very secret.

My interests were similar to those that of a girl like reading and so on, they weren't dinosaurs and trains, which are so typically of boys special interests, so they're easier to go by unnoticed, but special interests. Being able to relate well to children. Children are honest, they're open, and also my attention to detail. I didn't even know I had attention to detail till someone told me about two years ago. I think they've enabled me to hold down a job.

Ella: Anna, the same question to you, what's your favourite thing about having autism?

Anna: There definitely are positive aspects to autism, great examples from Christina. I think I definitely share an attention to detail and being able to really focus in on things. It's important I think that people who don't have autism are aware of those. I would probably say is your favourite part of autism in the world we currently live in or an ideal world? Because there are certain things where it's positive, but not for other people who don't understand it.

A lot of people within our peer support group talked about being able to remember details very carefully, like maybe conversations. I think, as autistic, we go over social interactions quite a lot to try and understand whether we did well or not in that environment. It means we remember all the details and specific things that other people often don't, neurotypical people.

That can lead to situations where somebody misremember something and you point it out and they disagree or they lie to you and you know that they're lying. I do wonder whether it makes a difference as to when you're diagnosed. Because I can imagine maybe as a child, if I had been diagnosed at that point and had understood, "Okay, well I struggled with this, but in this area I'm especially good and perhaps do better than other children." So you can then really build that into the way you interact.

Ella: It sounds like there are lots of amazing things about autism, but the world isn't quite ready to reflect those yet. Christina, the non-autistic world has a lot of social rules and social expectations. What kind of rules and expectations do you find strange or perhaps struggle with?

Christina: I think the thing I struggle most with is people not meaning what they say, people telling lies or doing one thing and saying another. They've been times in my life when I've eventually realised only after years that I've got something completely wrong. I find that very, very confusing and I find it difficult to understand how people can like each other, like someone and not like someone at the same time. In my mind you either like someone, or you don't like someone, there's no such thing as halfway lie, you're either lying or you're not lying.

I find that very, very difficult and very, very confusing. It makes me feel very unsure of being around others, particularly in social situations. I don't get jokes. I find that very, very difficult. People think I don't have a sense of humour, but the people that really know me know that there is one there, it's hidden somewhere. Because I don't get jokes in social situations, say with people from work, they don't get to see that side of me. I just wish everyone would be honest and straightforward which is probably why I can relate well to children because children can be brutally honest and completely straight forward.

They say the most wonderful things that are honest. They don't say they like you and actually they hate you or something like that. I can understand children much more than adults. I don't know at what point of child starts to change into somebody that is not straightforward. Doesn't say things as they are, or lies, or doesn't mean what they say but certainly I find it much easier to relate to children who are straightforward than to adults. I really struggled with that. Social situations are very, very difficult, social chatting, pretty impossible.

As I said, in my working life, I've had to find a role to play when I've had to go to such situations. I'll always be the person on the door, or the person doing refreshments, that kind of thing. Supposedly those situations I find difficult, or just not getting things that other people get and I have to pretend that I've understood something, when really I haven't got a clue what is going on. That can be very difficult.

Ella: Thank you so much for sharing that with us. Anna, are there any rules and expectations that you tend to find strange?

Anna: I remember, I don't know what age it was, but my friends or peers had gone from just saying hi to each other to hugging when they meet and trying to understand who you are meant to hug. What level of friendship do you have to be at to do that, I remember really struggling with that. I think now I've learned to spot when someone's going in for one [chuckles] and just do it, because that's easier. When I was younger I would really, really not want to because I found it so awkward and people found that quite funny. It meant that that moment of greeting with someone makes me really anxious because I don't know what the appropriate thing to do is.

I find when leaving social situations, it can get quite frustrating. If I'm ready to leave, I'll say, "I'm going to go now. Bye everyone, nice to see you," and I will walk out at that point. I have learned that that scene is quite rude. The whole thinking about maybe going, and then maybe mentioning, and then saying goodbye to that person. Then someone starts bringing up a new topic of conversation when you are already putting your coat on. That I just find very frustrating, and I think I have to be careful not to come across as rude in that situation.

Rhetorical questions, I've only realised quite recently that I struggle with rhetorical questions. I realise sometimes that I say something that's maybe seen typically as a rhetorical question, but I will need an answer [laughs]. With my partner I can say, "No, I need a verbal or visual response, anything," so that's quite funny, and he does it. In some situations, I find that quite hard when I'd say something that others assume is a rhetorical question and they don't respond, and then I feel like I'm left hanging.

It makes seeing stand-up comedy quite interesting for me as well because that's obviously all rhetorical questions. There have been occasions where I answer back because I don't know if the comedian is looking at you and asking you something. The rule is that oh, they are on the stage, it's not a conversation. For me, it feels really unnatural to not actually respond. I'm probably a terrible audience member.

Ella: That's quite interesting and also good that you and your partner have established a way to have your needs met for cues?

Anna: Yes, he's been really incredible through - Well, it was him that first suggested that. He thought that maybe I was autistic and he's been really interested in learning about it generally, so that's been really helpful, but yes, the rhetorical question thing. Also I've realised that I'm not very good at reading facial expressions. Which I always thought I was good at before. Now, that I've started talking about it, for example, I might see that someone's frowning and before I'd just make an assumption about that. Then go off on a whole, oh well, pose a story in my head about, "They are probably frowning because I left the teacup out and they are annoyed with me." Then that will turn into a real downward spiral. That's obviously a very petty example.

Now I'll be more likely to ask. With my partner, it might just be that he says, "Well, I've actually just had a bit of a bad day, and I wasn't even thinking about you." Which is actually a really helpful answer or he'll say something in a certain tone and I'll say, "Are you annoyed with me?" Then usually, the answer is, "Oh, no. I'm annoyed because of such and such." Again, whereas before I would have made the assumption that, I'd done something, it was my fault and then I would respond with that in mind. Actually, it might be that he was just upset about something. It was nothing to do with me, but because I decided he was angry with me, I wouldn't be able to be at all caring or sympathetic. Just knowing to ask has really been a game-changer for me.

Ella: It's great to have someone that you can be open with about what's needed to make you feel comfortable. Christina, what is something you wish people just understood about autism?

Christina: I wish people understood that our understanding of autism has changed enormously in the last 20 or 30 years. That we still don't yet understand everything about it, and that people would not think about the stereotypes of 10, 20 years ago. That autism can show very differently in different people. Not even just differently between men and women, but between women and women, and men and men. I wish that professionals involved with young people. Particularly young girls would be better educated about autism.

If I could change my career now, and if I was a much younger person. Who had been diagnosed with autism as a child, but that our situation was still the same in for example schools. My career would be as an advocate, as some kind of campaigner to get change for young girls in schools. It makes me feel quite upset and angry that people who are supposed to be educated about autism are continuing to perpetuate stereotypes for girls to not get an assessment. Not even being offered an assessment because they are not showing their autism in the same way that boys are in places like schools. I'd be an advocate for it.

I'd like people to have a better understanding and to understand that our understanding of autism has changed enormously in the last 20 years.

Ella: Thank you so much, Christina. Laura, just checking back in with you. What is something you wish people just understood about autism?

Laura: I wish that people understood actually, that autism isn't a mental illness. There's a lot of misconceptions in professionals about what autism is and what it isn't. Much like Christina, I do wish that it was better recognised particularly in girls and at a younger age. I feel that people have to go a long way through life often finding things very, very difficult without really understanding why. I think if there was better knowledge about autism, then more people would be diagnosed at a younger age.

Ella: Same question to Anna.

Anna: I wish people understood the mental health and energy implications of autism. I guess I include my pre-diagnosed self in that as well. Absolutely, seconding the answer that both Laura and Christina gave. It was more recognised in girls for sure. I think autism can often be talked about in a way, as though it's just like, "Oh, it's this little thing that middle-class white kids sometimes have." [chuckles] If their parents have put the time in to get a diagnosis. Not really understanding why those differences have such an effect on the child or adult with autism's life. Even if they are at the so-called higher functioning end of the so-called spectrum.

The massive mental health knock-ons. Sometimes when people have asked me about my autism and I've started to list different things I struggle with. A lot of people say, "Oh well, I get that too." Or the response is, "Oh, everyone is a little bit autistic." The thing is it's, let's just take loud noises, for example. A sudden loud noise isn't just annoying to me, it gives me an incredibly strong attack of anxiety, I don't know how to describe it, but it really kicks in the fight or flight response. That's just something that happens constantly throughout the day. If you add in other sensory things or social interactions and just how badly that affects you and that that can result in meltdown, shutdowns, depression. I wish that was understood, but it's not, you're just a bit sensitive to something. That is a real problem.

Energy is an interesting one because I got diagnosed with ME a week before my autism diagnosis, so that was a big year for me. I don't know exactly where the research is in terms of the links between ME and autism, but there does seem to be a huge amount of anecdotal evidence that the two go together. That it's potentially the extreme end of exhaustion from just a lifetime of masking and trying to keep up with things.

I guess I wish people and myself had known and appreciated those knock on effects. I just thought everyone was having to deal with this. Now I can see that certain things were hard for me and I had to try a lot lot harder. Not necessarily really everyone with autism likes it to be called a disability, but for me acknowledging it as a disability and calling that, I've actually found incredibly helpful and freeing. Because it's just allowed me to give myself a break.

That understanding that certain things in terms of work or socialising, I've just pushed myself to do so. I just thought everyone else gets on with it so should I, but actually, maybe I shouldn't in certain situations. Maybe I should give myself a break and say, " Actually, that type of work or that type of event is not for me because it will result in a massive kick to my mental health and energy levels."

Ella: Earlier Anna, you said autism spectrum with a bit of a disapproving tone. Do you not agree that there is a spectrum?

Anna: Let me see if I can explain what I mean. My understanding is that you either do or don't have autism. I was saying, so called because more in terms of how it gets used by people just in general conversation. Rather than necessarily in a medical sense.

Ella: A bit like when people say, "Oh I'm so OCD about this or I'm so OCD about that."

Anna: Kind of yes, because I think someone like me who can pass normal-ish. Most of the time, it's seen as well, oh so therefore it's okay for you, it's easy for you, you maybe don't necessarily need much help or your needs are very different but. Perhaps maybe almost that it's arbitrary that someone like me even has a diagnosis. Whereas, when people talk about someone being really autistic or extremely autistic. Again, just conversationally what they usually actually mean when you dig in. It's someone who has autism, but also other comorbid conditions or like a learning disability, or epilepsy as well.

It's not that their autism is extreme, it's that they're dealing with lots of other things on top of it. I don't know how well I'm explaining myself but I do find the idea that you can be a little bit autistic or very autistic, quite unhelpful to be honest.

Ella: I'm really glad that you went into that and told us.

Anna: I'm not saying necessarily that that shouldn't be used. There's enough misunderstanding about autism and how it affects people as it is. I've noticed that being used in a way that's it's offensive, but it perhaps doesn't help with people trying to understand what it is. I don't know how Lura and Christina feel about that one but it's a personal topic that I've been thinking about.

Ella: Christina, what do you think about the phrase "autism spectrum"?

Christina: It's a term that I hear every day. I think that perhaps there is a spectrum, but that everybody who is on that spectrum, has difficulties in similar areas. For some people, the difficulty with social communication would be much worse. For some people the difficulty with language would be much worse. For some people that difficulty with OCD-like behaviour, repetitive behaviour, could be much worse. For some people, being hypersensitive to something could be much worse.

I see children at school for example who have a diagnosis of autism, but one child is able to socialise much more with other children, to play much more with other children. For example, A is able to play much more with other children than B, but B is incredibly sensitive to light and sound, whereas A isn't, that kind of thing that. For some children, the language aspect is much more of a problem. For another child, repetitive behaviour structure or lack of structure is much more of a problem.

Really at the end of the day, we're all human, and every human being in the world is different. That doesn't mean to say that every autistic person has to be the same. Every person with a diagnosis of autism can be different in the same way that every human being is different, I suppose. I don't know if that makes any sense.

Ella: It does. Thank you very much. Coming on to our last question. Again, I'll go with Christina. What changes would you like to see happen in mental health services?

Christina: I think the biggest change I would like to see is that mental health services are put on a par with medical and surgical services. I would like to see that every professional at every level in mental health services are better educated about autism. On a grassroots level to make hospitals a better place. A therapeutic environment, a safe environment, a classroom environment. These are things that would benefit everyone using their services, not just people on the autistic spectrum. I think there's quite a long way to do with mental health services.

Ella: Anna, is there anything that Christina is saying that's resonating with you?

Anna: Yes, I think Christina's point about hospitals is great. The idea that making environment more autistic friendly, often makes it generally more friendly. You could open that out to all those public spaces. I guess the main thing for me is just more knowledge and awareness of autism within mental health services and medical services, generally. The fact that me and Christina have been seeking medical help throughout our lives. I've seen however many GPs with mental health issues and therapy, CBT et cetera.

It was just never picked up on once, or even hinted at. It took me and my partner to read someone's account on Instagram about their experience about autism to think, hang on, could that be me? That's just a story that's repeated over and over again, really. Seeing medical services for mental health issues. I just think what a shame that it was never picked up on earlier because I struggled a lot with depression and everything I tried and really really did try just didn't seem to work or help. As soon as I realised I was autistic it didn't necessarily, well, I was going to say it didn't instantly go away, it did instantly go away. It turned out that I was before just in a constant state of anxiety so that it would tip into depression very quickly. Now, I know what kind of things make me anxious because I have learned more about autism so I can kind of nip things in the bud lot earlier on.

Feel down about something but understand a bit more why I might be. Whereas before I would be casting around desperately trying to find reasons with things wrong in my life or wrong with the people around me and come up with all sorts of negative narratives about myself. Which has very rarely happened since diagnosis.

Ella: For further information and support please go to the neurodevelopmental psychiatry Special Interest Group on our website and see ADHD and autism resources. A huge thank you to Laura for her expertise on this topic and Anna and Christina for sharing their personal stories.