The price of waiting years or decades for a diagnosis

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ASPartOfMe
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04 Dec 2021, 8:37 am

The autistic women who have waited decades for a diagnosis

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“There is a male stereotype of autism that most of us carry in our heads,” says Professor Francesca Happé, director of the Social, Genetic and Developmental Psychiatry Centre at King’s College London.

Her research found that boys with autism were diagnosed on average at the age of eight, whereas for girls it was 11 or 12.

“When a parent or teacher sees a girl who is struggling socially at school then they don’t automatically think of autism, whereas they would if it was a boy and that works all the way through the diagnostic systems,” she says.
This was the experience of Beth Rees, 33, who received her clinical diagnosis of autism on November 3, shortly before Melanie and Christine shared theirs.

“I had a sense of validation after all those years of not being listened to,” says Beth, a chatty children’s charity worker from Cardiff, who says she has always felt like a “square peg in a round hole”.

At school, she was hyper-focused and diligent but regularly dissolved into tears because of struggles with numbers.

“I would be sitting at home with my parents, rocking and crying about maths and they would tell me it was fine but I would reply, ‘No it’s not because you’re going to think I’m stupid if I can’t do it’.”

Beth’s brain also shut down in socially stressful situations. “Kids at school wanted to play certain games in the playground and I stood there being awkward, not knowing how to interact,” she recalls.

“At senior school, I felt left out and people would tell me ‘there’s something wrong with you’ or call me ‘weird’ or ‘strange’.”

Yet when Beth had a mental breakdown in 2017 following a series of stressful jobs, her GP referred her to a psychiatrist who wrongly diagnosed her unstable moods and outbursts as borderline personality disorder (BPD).

She was placed on anti-psychotic medication and suffered terrible side-effects.

Incredibly, she sought a private autism assessment two months after her BPD diagnosis but was told: “You’re not autistic, definitely not. You don’t match the criteria.”

This was despite her displaying classic symptoms, such as several “complete obsessions” – with the TV show Sex And The City and children’s authors including Roald Dahl.

“If a boy says he’s interested in Thomas The Tank Engine or has hundreds of photographs of electricity pylons, a red flag goes up,” says Prof Happé.

“If a teenage girl says she likes Kate Winslet then it’s easy to think that’s common, but ask detailed questions and you might learn she only collects facts about Kate and doesn’t watch her films.”

Children’s charity worker Beth Rees struggled with numbers at school

It was a similar story for Reading resident Mahlia Amatina, 37, wrongly diagnosed with BPD aged 28, before being told she was autistic at 31.

“I’ve always felt a sense of difference,” she says. “At school everyone tried to collect as many stickers as possible so I took that literally.

“I peeled labels off fruit and CDs and stuck them in my collection. Kids laughed at me because they weren’t cartoons or proper stickers.

20-year study of UK autism diagnoses published in August found girls are also better than boys at “camouflaging or masking” autistic traits.

“I had drama training so my level of masking was ridiculous,” says former teacher Tracy Clements, 53, who finally understood her lifelong struggle with personal and professional relationships following her autism diagnosis this year.

“I kept throwing myself back in again and again, and getting more hurt, which is how I ended up physically and mentally drained.”

The former retail, hospitality and recruitment worker has held 30 jobs. “I always tell the boss how they can improve and that never goes down well,” she says.

Tracy avoids tables near bins in restaurants and requires an aisle seat on a plane or she will stand up and leave.

“I would rather run into the street or rip my skin off than be in that seat. I can’t control that. It’s my body’s way of saying I don’t want to be there.”

Artist Mahlia Amatina, 37, was wrongly diagnosed with BPD before being told she was autistic at 31

She always assumed she had an “idiosyncratic” personality but now realises autistic brains “operate at a higher level of irritability” so a noisy restaurant “can tip you over”.

Four years ago she began shivering involuntarily through exhaustion and was diagnosed with fibromyalgia, which causes pain and fatigue.

But Tracy felt instinctively this was wrong, and a rheumatologist agreed.

A clinical psychologist diagnosed her with complex post-traumatic stress disorder but it took two more years of “catastrophic appointments” before her autism was confirmed.

It’s no surprise that 70 per cent of autistic adults experience mental health conditions, particularly anxiety and depression.

Endless camouflaging “comes at a cost as it’s exhausting and erodes the individual’s sense of self”, says Prof Happé.

“Sadly, suicide rates are very elevated in autism, particularly in intellectually able autistic women.”

Research and campaigning charity Autistica is calling for increased funding for support and treatment.

“The inequalities autistic people face are unacceptable: reduced life expectancy, significantly higher rates of mental health problems and exclusion from work,” CEO Dr James Cusack says. “We need research that directly improves lives.”

Tracy agrees. After she was diagnosed with complex PTSD, she was told to “go and tell the truth” to people. “They meant I should say I wasn’t well but I told people everything I had always wanted to tell them, which was a disaster.”

At one restaurant lunch, she told her friend she thought she was autistic based on her inappropriate footwear, hand gestures and hair flicking. Another friendship was lost.


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SharonB
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09 Dec 2021, 8:11 pm

Yes, just, yes. :cry:

The price? My esteem. I had misdiagnoses in my 20s and 30s - got it right in my late 40s.

As you may know, my daughter was not correctly diagnosed at age 9... I am trying for a reevaluation and have already had two referrals elsewhere. At this rate she will be 11 when she's diagnosed. Just like the article says is average.

I'd like to get my brain around this:

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...for me, The D in ASD (Autism Spectrum Disorders) is for driven, daring, different and dynamic...



IsabellaLinton
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09 Dec 2021, 8:34 pm

Quote:
“I kept throwing myself back in again and again, and getting more hurt, which is how I ended up physically and mentally drained.”

“I would rather run into the street or rip my skin off than be in that seat. I can’t control that. It’s my body’s way of saying I don’t want to be there.”

“Sadly, suicide rates are very elevated in autism, particularly in intellectually able autistic women.”

“The inequalities autistic people face are unacceptable: reduced life expectancy, significantly higher rates of mental health problems and exclusion from work."

After she was diagnosed with complex PTSD, she was told to “go and tell the truth” to people. “They meant I should say I wasn’t well but I told people everything I had always wanted to tell them, which was a disaster.”



These parts just made me cry.

Thanks for posting, ASPartOfMe

(Diagnosed at 49 years 11 months)



Finn Razelle
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01 Jan 2022, 6:12 pm

Still questioning/researching and undiagnosed (it's early in this discovery journey for me), but this article struck several chords--thank you for posting!

Have always had mental blocks around math despite being otherwise good at school... Not that I couldn't do the higher-level math that most high schools seemed to torture their students with, but it took me soooo much longer to understand it: so many afternoons crying over my homework, so many mornings coming in early for extra help, so many agonizingly embarrassing classroom moments in which I couldn't get the damn answer right and just struggled not to cry in front of all the other kids until the bell rang and set me free for the day.

Have avoided math all my life since (probably to my detriment) and just recently had a vet-tech job in which I had to learn medical math--felt the old tears streaming down my face when confronted with fairly simple but fast-paced algebra problems, the answers of which had very high stakes: the lives and well-being of dog- and cat-patients... and combined with all the other traumatic stress of that particular job (gory surgeries, biting dogs, irate pet owners, chaos)... I made like Monty Python and RAN AWAY, RAN AWAY.

Wondering now just how much of my aversion to that job may have had to do with autistic traits and sensitivities...?



DorothyofOz
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10 Jan 2022, 3:48 pm

I'm not totally sure if it would have benefitted me to have been diagnosed as a kid, for a few reasons. I don't think there would have been the right help out there at the time. I wrote about it in a Medium article: Medium article



starrytigress
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13 Jan 2022, 8:38 pm

Wasn't diagnosed until two months shy of 18. This was back in '08 when there weren't as many resources for autistic kids when they went off to college, and that was kinda the cut-off for services. So it was like 'Hey, you're autistic (specifically Asperger's Syndrome), you also have PTSD. Have fun at college'.
My mom is still beating herself up about what I went through with school. I keep reminding her that I was always 'normal' at home. She never thought there was anything wrong with me, I was just different, but everyone is different, some are just more different than others. I feel lucky to have a mom like her, even if I was diagnosed late.
The one thing that is getting me, is that I keep seeing articles like this. Ones that talk about how underdiagnosed women/girls/AFAB are severely underdiagnosed, and that this has serious repercussions throughout the lives of those individuals. Again, and again I see the headlines 'autism different in women' but what has been done about it? I'm not aware of any changes or augmentations that have been made to diagnostic criteria. I have heard about much being done to change this, other than more studies that just go on to highlight the discrepancies.
I mean, there's some biologically specific research that would be super helpful. Right now there is anecdotal evidence that women/AFAB suffer more severe pain during their menstrual cycle (I personally have been diagnosed with PMDD), but is this true, or is it just an observation of that specific group of people?
I would love to see more articles about breakthroughs being made that actually HELP women/girls/AFAB. That's really what's needed.



SharonB
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15 Jan 2022, 10:28 am

Now that this is a more mainstream idea, one would think the various academia are already on it, or that the associations and groups are advocating for it. Albeit, the groups need to focus more on improving the life of Autistic persons (and adults) and not just those around them. As you may know, women's hardships in general remain overlooked. I am reading a recently published book about women's inequity in the (abusive) workplace and -as usual- the burden seems to be on the minorities themselves. Awareness is the first step... and the second step is .... coming?

Yea for a supportive mom! A bit of compassion and understanding (or attempts) can go a long way.



starrytigress
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17 Jan 2022, 8:04 pm

SharonB wrote:
Yea for a supportive mom! A bit of compassion and understanding (or attempts) can go a long way.


I know! I feel very luck, although mom and I both agree that if my younger (non-autistic) brother had been born first, she might have suspected something was off, and gotten me tested sooner. Instead, she just adapted because that's the kind of baby I was. I kinda think maybe more parents of autistics, like my mom, need to speak out more about raising an autistic child. Because she did a lot of the right things, without even knowing it.
For example: I couldn't go all day to the zoo. I could do maybe two hours and then I was done. And when I was done, I was DONE! So instead of trying to force me to go to the zoo for the whole day 'because I should', she bought a year membership, that let you go as many times as you wanted. So we'd go to the zoo one or twice a month, and each time we'd go see a different area. So I would see the whole zoo, just over the course of two or three months, instead of all at once.
The other thing my mom did, and this is always something I stress with NT people who want to know how to better interact with someone on the spectrum, is ASK WHY! Whenever I was doing something that my mom thought was odd, or didn't quite understand, she would ask me why I'm doing that. I always had a logical (to me) answer for things that others might think is illogical. And even if my mom didn't really understand my answer, well, it made me happy, wasn't hurting anyone, wasn't destroying anything, and the mess was 'manageable', so she'd just let me go on doing what I was doing. So that's why I always stress to NT people, if an autistic does something you don't understand, or find strange, or even hurtful, ask them why. Because in all likelihood there is a perfectly logical reason for it, and 99.9% of the time hurt is cause unintentionally, and you will find the autistic person completely mortified and apologetic about what they accidentally did. Even now, as an adult, when I make social mistakes, my mom will take me aside and sit down with me and explain the situation. Like one time a I had a lot of college classes with wanted to go out for coffee. I hate coffee, it tastes like burnt. My mom was like 'get tea then!' The point wasn't to drink coffee, the point was to try and spend some time together outside of class.
I know my mom blames herself for a lot of the trauma I've gone through in the public school system, that she should've done something more, but I always try to tell her how grateful I am for all of the things she's done right, even without knowing I was autistic.



SharonB
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18 Jan 2022, 9:01 pm

^^ Those are great bits of advice. Normalizing reduced exposure (stimulation) and "Ask, don't assume" culture.



txfz1
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18 Jan 2022, 9:53 pm




Have you seen the mental health tv ad, the awkward silence? The 'ask, don't assume' would be a good psa.



ASPartOfMe
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21 Jan 2022, 8:47 am

Why Are Many Autistic Women Missed or Misdiagnosed?

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Autism is not an illness, nor is it something that can ever be cured. It is often described as a lifelong developmental impairment and many people believe it should be considered a neurotype. For me, it is a disability, and while I love the way my brain works, society is not set up to accommodate people who experience the world as I do. It can be exhausting and debilitating to have a brain that constantly sees things from a radical and alternative viewpoint, especially when society adores sameness. My life becomes problematic when I am expected to behave like other people, particularly women who are not neurodivergent, because I cannot do it.

The current rates of diagnosis for autism suggest that there are a lot more males impacted by this condition than females and I believe this is a dangerous and inaccurate narrative that has evolved largely because of discrimination and prejudice towards females who are neurodivergent (Posserud et al, 2021)

These issues and misconceptions may be perpetuated if many professionals believe or are educated that autism is more male than female. In turn, clinicians may view the condition through that information and gender-biased lens (Muggleton et al, 2019). It is only critical inquiry and analysis which will challenge the prevailing patterns. I believe the issue is rooted in the conception and early research on this subject, which focused on males and thus established the gender-biased stereotypes around the condition that continue to prevail.

When I was assessed in November 2020, the psychologist told me they received the most criticism around diagnosing people like me . I understood that to mean that I don’t fit the old views around being autistic or having a disability. That professional said that, in their professional opinion, I was “clearly autistic.” I am so grateful for that psychologist and how they have helped me understand who I am and why I am this way.

I wish I had known earlier that I was autistic. I had been searching for answers and engaging with our health service for two decades before I went privately and received an autism diagnosis. I do not believe my experiences are unique and I believe this is one of the reasons why so many girls and women are not diagnosed or are being consistently and persistently misdiagnosed and thus receiving ineffective or even damaging treatment. We are not believed or viewed as autistic because of outdated and problematic views around what autism looks like and who it impacts.

In recent years, I have done extensive research in this area and I have felt relieved and delighted about what I have come to learn. My diagnosis and subsequent career change have been life-changing and life-affirming. I wish I had known, so that I could have found my people and my purpose earlier. I wholeheartedly believe that my purpose is working with neurodivergent people and helping to increase awareness around this issue, particularly in how it impacts and affects those who identify as female or who were assigned female at birth.

When I see celebrities such as Elon Musk talk about being autistic, I can see how some of the misconceptions and stereotypes around Autism Spectrum Disorder (ASD) may continue and strengthen. Musk supports the dominant narrative connected to what was previously known as Asperger's, of the technological or scientifically gifted, frustrated genius. Musk is undoubtedly a remarkable person who has achieved incredible things. The fact he outed himself as the first autistic person to present Saturday Night Live is encouraging, but his privilege and his enormous wealth and success have afforded him security and freedom that many on the spectrum do not have. It was my privilege and my ability to pay privately for an assessment that led to a diagnosis. This is problematic in that it means that many who have this condition are undiagnosed and misdiagnosed because of their socio-economic circumstances or their lack of ability to consider autism as something that relates to them.

Another dangerous and misleading narrative that continues to prevail, and which I am hoping to help change and challenge, is around empathy.

I think autism impacts all genders, but much historical research and data on this condition have prioritized the male experience. We only need to reflect on the controversial extreme male brain theory produced by Simon Baron-Cohen (2002) to see how detrimental this data was to females being assessed and diagnosed.

If we want to understand why the rates of diagnosis are higher amongst men, first we must consider why society finds it easier to see men as being impacted by autism more than women (Milner et al, 2019). These statistics will not dramatically change until beliefs, ideas, and attitudes around autism do.

The part I bolded is quite telling.


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21 Jan 2022, 9:04 am

When diagnosed as a teenager, I was led to believe it was mainly a male disorder. Like highly skewed towards male, 80/20 paretos law. That was my impression. It's only years later I heard abut how many women never get diagnosed,and fly under the radar, because of apparently superior masking skills, or just never being suspected of a harbour such a syndrome. It kinda of tragic it that perspective. I see a lot of hurt in this thread. :(


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16 Mar 2022, 7:07 pm

DorothyofOz wrote:
I'm not totally sure if it would have benefitted me to have been diagnosed as a kid, for a few reasons. I don't think there would have been the right help out there at the time. I wrote about it in a Medium article: Medium article


I know for a fact it wouldn't have benefitted me, because my elementary school was terrible and would have had a terrible approach to dealing with autism. And they made me hate the concept of ADD as a diagnosis, so if they'd been pushing an accurate diagnosis as the ultimate answer to what's wrong with me, it'd have made it so much harder for me to accept myself.



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16 Mar 2022, 7:26 pm

I'm "fortunate" that there was absolutely no doubt that I was autistic when I was a toddler.



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03 Jul 2022, 8:30 pm

Yeah this thread is hard to read, because getting a diagnosis as a child when clearly showing signs of autism would have probably helped a lot, and maybe I wouldn't have had to suffer so much and end up suicidal in my late teens/early 20s. I hate that so many females have had to suffer. It is no wonder our self esteem takes a major blow, when we struggle so much for so long and get told how "we are fine" or whatever is used to write off our autistic symptoms. It really ends up crazy making. I know at times I've almost felt like I was losing my mind because I didn't understand why things were so hard for me and obviously not for others around me. They really need to adjust the diagnosis scale to accommodate females, before any more end up horribly damaged by being shrugged off.



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05 Jul 2022, 6:27 pm

I envy them. I had a diagnosis at 8 years old but I've never been happy with it. I think my life would have been much more normal without a diagnosis.


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