One size doesn't fit all: 3 women and gender-fluid people on their later life autism diagnosis 5 months ago

One size doesn't fit all: 3 women and gender-fluid people on their later life autism diagnosis

"We now know that autism isn’t just a one size fits all kind of model." 

There is a large disparity between women and those who don't identify as male getting an autism diagnosis compared with their male counterparts.

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In fact, one survey found that 42% of autistic women are misdiagnosed before receiving their correct diagnosis.

But what is it like to be a woman or gender-fluid person with autism in Ireland today, how difficult is it to receive a diagnosis, and how much of a difference can it make when you finally do?

Her spoke to three autistic people living in Ireland about this issue and the reasons behind the disparity. One is that autism has often been portrayed in the media as one particular format in one type of person.

"You’ll find it’s often a young boy with his mother rocking back and forth, or possibly an older man who’s very brilliant at maths but has difficulty making friends," writer and actress Stefanie Preissner tells Her. 

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Stefanie Preissner

The Can't Cope Won't Cope author was diagnosed with autism last year at the age of 34. Like a lot of other women, Stefanie's diagnosis was a lot later than that of her male counterparts. 

With no knowledge that she was autistic, Stefanie says she struggled with putting herself in many situations. "I wondered: 'Why does everyone love going out to these nightclubs and I don’t?'" she says. "But I didn’t want to miss out and I didn’t want to be weird so I just went, and then I ended up being really alcohol-dependent because of that.

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"There is a lot of danger in not being diagnosed. I put myself in dangerous situations because I didn’t know I was autistic. I don’t have to do that anymore."

AsIAm, Ireland's National Autism charity, has a strong focus on addressing societal barriers to inclusion for autistic people. Fiona Ferris, Deputy CEO of the charity, attributes part of the reason for the lack of diversity in diagnosing to early research on autism carried out by psychiatrist Leo Kanner in the 1940s. 

"He based his study on 11 children and all of them were boys," she says, "which meant as a result all of the diagnostic criteria developed for autism was based on male child presentation.

"The group of children that he was exploring would have all been of a similar profile, so it wouldn’t have represented how broad the spectrum is.

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"When people are misdiagnosed they are often described as a disorder, like an eating disorder or bipolar disorder. But whenever we talk about autism now we no longer refer to it as a disorder, we refer to it as an autistic spectrum condition. 

"It isn’t a disorder or a disordered way of being, it’s just a different way of understanding the information that’s out there in the world."

Anna Czarska is an autistic film maker who recently produced Mildly Different, a short film about not receiving an autism diagnosis until adulthood. 

Anna identifies as gender-fluid, and tells Her that being gender non-conforming is quite common among the autistic community. They didn't receive the correct diagnosis until they were in their 30s.

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Anna Czarska (left)

"When I read that a lot of autistic people are gender non-confirming it made so much sense to me," they say. "I remember being misdiagnosed and they wanted to put me on medication and I was like 7 or 8 years old. My mother was like 'no way.'

"At that time, thinking there was just something wrong with me really led to a lot of psychological problems for me... that I wasn’t good enough, that there was something wrong with me, and why did I have to be so damaged?"

Getting an autism diagnosis in Ireland as an adult can be quite difficult, and many people are forced to go through the private route. 

Anna first went through the HSE but says they were left waiting for months on end with no clear plan or end in sight. They initially gave up on being diagnosed before a friend recommended a specialist with a sliding scale fee. So, they went private. 

"It affected me more than I thought it would," they say. "When the person validated what I thought was going on, when the person actually told me 'you are autistic', I remember pausing and just crying. I didn’t expect to feel that because I already knew." 

For those unable to afford or access private healthcare getting a diagnosis can be even more challenging. Stefanie recommends Adult Autism, who offer a consultation service before a full assessment that costs €150. If you go through with an assessment this will then be taken off your total. 

But although there is relief, the experience of receiving a diagnosis can also unearth a whole wave of new emotions. Stefanie says: "After my diagnosis I felt a whole perspective shift. You have a significant detour in your identity, and because there’s so little known about autism it can feel like a really lonely scary place."

The stigma around autism creates another barrier for young girls being diagnosed. Stefanie says parents had told her they were hesitant to get their daughters tested for fear of the autistic label. 

"If you had a child and you said, 'Oh, I think my kid needs glasses, she squints when she’s watching the TV, but I don’t want people to call her four eyes so I’m not going to get her tested,' that would be barbaric. If she needs glasses, she needs glasses," she says.

There is a responsibility on caregivers and parents to educate themselves about what to look out for," she says. "It can’t be up to the autistic person themselves to identify that they have this brain. If you are a parent of a girl, or you teach girls, it’s on you to educate yourself about the signs of autism and look out for it."

The younger someone is diagnosed the better, so that they do not need to go through a misdiagnosis or deal with misinformation in later life. However, getting a diagnosis does not mean that stigma will be completely erased.

Once Stefanie disclosed her diagnosis she received some unwarranted opinions, mostly online, about how she should identify. 

"I came out and said 'I am autistic', and over 100 people messaged me and said 'you’re not autistic, you have autism' and 'you are not this diagnosis.' I was like hang on a second, I am autistic. That is my identity, it’s who I am," she says. 

A lot of the barriers that exist for autistic people often aren’t anything to do with autism. In fact, they can more often be due to how other people respond. 

Representation plays a huge role in this story, as does making sure that women and people who don't identify as male do not get a missed diagnosis, just because society has a certain view of what autism looks like. 

"The more we come out, the more we talk, the more people are going to understand that it’s really just a different way of your brain working," says Anna. "It doesn’t mean it’s bad."

For more information on autism in adults, you can visit AsIAm.