Autistic Girls Are Undiagnosed, Underserved And Misunderstoo

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Autistic Girls Are Undiagnosed, Underserved And Misunderstood
^ true.

What tends to worry me more is the high rate of missed AS + misdiagnosis of another condition, which has been a frequent report made on WP over the years.

The basing of "professional" knowledge on male only samples in research (often poorly designed research) is part of the problem. There seems to be no will on the part of researchers generally to correct this gender bias.

Perhaps this will only change with female AS researchers entering the field.

The reason Autism $peaks chose blue for their signature symbol of autism is the "blue for boys" tradition. They appear to be continuing a course of being wilfully blind to the adult female population, and have done nothing to fund research to correct the gender imbalance that I am aware of.

We have a long way to go.

^^^ you made a good point! I wish the diagnosis included fMRI because there's already enough comparison studies where NT and ASD brains respond differently to the same stimuli. After all, it's a neurological condition, not just a set of behaviors. I wish everyone knew that the diagnosis was based on boys.
My aunt is dating a psychiatrist so I thought it would be a good idea to ask him if he could get me tested. I was wrong. He had only seen me one time in her garden when I was on the roof, I think, and he was gathering raspberry. After that I asked him over the phone if he could give me some tests. He said I don't have it and he won't give me any tests.
I think it's hard to prove your point when you are autistic or a suspected autistic like me. People never want to waste their time with me and try to get rid of me as soon as possible (I'm taking life in general). People don't want to do their jobs! But for me, arguing is difficult. It requires preparation for all possible outcomes of the dialogue, making lists of what to ask, and after all the cold, indifferent, hostile attitude I have to deal with I just give up.
People also don't want to read lists of questions I prepare for them! And they don't want me to read out such questions, even if it's their job to help me (again, I'm talking life in general)!
So of course it's hard to stand for yourself, get diagnosed, get help. I think the best thing to do would be women helping women in all aspects of life, for instance, funding and conducting medical research. Men only pretend they care about our lives. The only profession where women earn more than men is porn actress. I think I've made my point.

Do you live near a research university? Graduate researchers, who are often trained to see the signs of various disorders, can sometimes give assessments for personal knowledge reasons. It may be possible to test your suspicions there. My current university has a building that specializes in autism research and education. I just walked to the front desk and asked to take the ADOS-2. A graduate student was more than happy to give me the assessment without additional charge. I know it's not an offical diagnosis but it's better than nothing.

Well thanks to your advice I have been searching and have just found such university in a close proximity. I'm definitely going to contact them!

They mostly focus on psychiatry and drug&alcohol abuse but they also study autism in adults. One of their articles (also with a prevalence of males in the research) is about misdiagnosis in autistics. In my country autism research is a late and the article says even severe cases don't get governmental support. It also states that for no reason autistics get their diagnosis changed to schizophrenia when they approach the age of 18. So I'm not doing this for even support, but rather for better understanding.
But things improve. I know there was a boy in my ordinary public school with super obvious autistic features but I'm absolutely sure he didn't have a diagnosis because in the year 2011 only 27,8 in 100000 children in my country had the diagnosis.

I must apologise for deploring men, like they don't care at all or all of them are savage opressors. Hans Asperger's did a good research. Maybe his school didn't have girls because parents were not so eager to get rid of their calmer daughters, if this makes any sense? Like, there was a girl in my class who only talked when teachers asked her something. Nobody complained about her. Such model children don't usually get expelled from public schools. So Asperger's worked with ''difficult'' kids, and boys often happen to be ''difficult''.
I was difficult, often fought, even bit and attacked with scissors, chewed school desk, etc. I can't make judgements about so called difficult boys and calmer girls. I certainly don't know.

^^^ you made a good point! I wish the diagnosis included fMRI because there's already enough comparison studies where NT and ASD brains respond differently to the same stimuli. After all, it's a neurological condition, not just a set of behaviors. I wish everyone knew that the diagnosis was based on boys.
My aunt is dating a psychiatrist so I thought it would be a good idea to ask him if he could get me tested. I was wrong. He had only seen me one time in her garden when I was on the roof, I think, and he was gathering raspberry. After that I asked him over the phone if he could give me some tests. He said I don't have it and he won't give me any tests.
I think it's hard to prove your point when you are autistic or a suspected autistic like me. People never want to waste their time with me and try to get rid of me as soon as possible (I'm taking life in general). People don't want to do their jobs! But for me, arguing is difficult. It requires preparation for all possible outcomes of the dialogue, making lists of what to ask, and after all the cold, indifferent, hostile attitude I have to deal with I just give up.
People also don't want to read lists of questions I prepare for them! And they don't want me to read out such questions, even if it's their job to help me (again, I'm talking life in general)!
So of course it's hard to stand for yourself, get diagnosed, get help. I think the best thing to do would be women helping women in all aspects of life, for instance, funding and conducting medical research. Men only pretend they care about our lives. The only profession where women earn more than men is porn actress. I think I've made my point.

Dena Gassner was 33 when she took her son to be checked out for autism. He was three years old and had been struggling to cope with ordinary situations, facing challenges with learning, expressing symptoms of distress and harming himself. She started searching for ways to help him, and began to notice that, in her own ways, she faced many of the same problems – in her struggle to manage routine tasks, in managing stress, and difficulty dealing with others.

It was then, after years of other diagnoses, from PTSD to ADHD, from clinical depression to OCD, and a cocktail of medications that proliferated as doctors attempted to counterbalance the effects of each, combining Ritalin with Lithium, Wellbutrin, narcolepsy medications and Valium, that Gassner, alongside her son, was diagnosed with autism. It was, she says, a huge relief – at last doctors had pieced together what had been assumed to be standalone problems to regard them as a single condition.

“It took a year and a half to detox from all the other medications,” she says, to begin to feel more 'normal'. Gassner had been sexually abused as a young person, which she attributes to failing to spot warning signs. This obscured more fundamental issues, causing physicians to focus on the “noise” it generated, but failing to spot the problems underneath: intellectual development out of step with her peers, organisational problems, and missing social cues.

With diagnosis, Gassner was able to meaningfully describe and control her condition. Before, she felt shame at her inability to “be productive” – she had grown up in a household where everything had to be put away neatly, and would break down in tears to announce that she was “so disorganised” as a way to excuse her inability to be similarly neat.

She now realises that she experiences a different form of memory processing. To Gassner, objects stop existing once they’ve been put away: she needs things laid out. It also helps to prepare scripts in her head before entering unfamiliar situations, which lessen the anxiety of having to explain herself to others in a language they will understand. Gassner’s experience is by no means unique. But why did it take so long for her to reach a diagnosis?

At an incidence of 4:1 male to female, autism has primarily been seen as a male condition, and Hans Asperger, who first theorised the condition in 1938, initially thought it was exclusive to males.

With ‘higher-functioning’ forms of autism – a term that relates to higher IQs and greater ease adapting to the norms of the world we live in – the incidence is higher still, at 10:1 male to female, raising important questions about autism's relationship to sex and gender, and why it is that so few women have been seen to have autism.

Men do seem to have a higher predisposition to developing autism. Male foetuses seem to be more vulnerable to health problems in general. They have a higher mortality rate and are more prone to a range of health issues – ear infections, for instance. Meng-Chuan Lai, director of gender research at the Autism Research Centre in Cambridge, says this vulnerability may result from hormonal disturbances related to sex differentiation, immunological development, and development of the gut microbes – all mechanisms thought to relate to the development of autism.

With ‘higher-functioning’ forms of autism – a term that relates to higher IQs and greater ease adapting to the norms of the world we live in – the incidence is higher still, at 10:1 male to female, raising important questions about autism's relationship to sex and gender, and why it is that so few women have been seen to have autism.

Men do seem to have a higher predisposition to developing autism. Male foetuses seem to be more vulnerable to health problems in general. They have a higher mortality rate and are more prone to a range of health issues – ear infections, for instance. Meng-Chuan Lai, director of gender research at the Autism Research Centre in Cambridge, says this vulnerability may result from hormonal disturbances related to sex differentiation, immunological development, and development of the gut microbes – all mechanisms thought to relate to the development of autism.

Despite certain differences between men and women, some scientists are unconvinced that they fully explain the disparity in autism diagnoses. Lai argues, for instance, that the perception that the condition mostly affects men has led to a bias in the diagnosis. Lise Eliot agrees: “From the outset, [autism] was defined as more prevalent in males. Furthermore the different way boys and girls are socialised means they express autism in different ways, which has led to diagnostic criteria that fails to spot some female patients.

Social camouflaging is a coping mechanism used by autistic children as a way of adapting to the ‘neurotypical’ world through mimicking behaviours, preparing ‘scripts,’ such as Gassner describes, and using other fitting-in strategies. Because girls experience socialisation which emphasises fitting in more in general, masking can often be more pronounced, making them more likely to evade diagnosis. “Women are taught to fit into situations. It isn’t acceptable for girls to be blunt,” Gassner says. Exploratory research into this camouflaging suggests that autistic women camouflage more than autistic men, that it is related to reduced wellbeing, and that it decreases as time passes after diagnosis.

Will Mandy, a clinical psychologist specialising in autism in girls and women at UCL, explains that where younger girls may have flown under the radar, their social world becomes immensely more complex around the age of 12-13. It’s common that additional mental health difficulties creep in for girls with autistic traits during this period, as “the demands being made on their social skills are outstripping their social capacities,” Mandy says.

The struggle to cope with this increasingly nuanced social world can be immensely stressful for girls with undiagnosed autism, and Mandy suggests this may be one of the reasons for the additional issues in terms of anxiety, OCD, ADHD, eating disorders and depression. It is striking, he says, that regularly across the scientific literature, at least a quarter of women who are suffering with anorexia nervosa appear to have high levels of undiagnosed autistic traits as well. In addition, there is some research suggesting autistic girls may be more vulnerable to sexual abuse, as Gassner's experience anecdotally corroborates.

Indeed, many women and girls who suspect they have autism have reported huge hurdles in accessing appropriate care. Mother and autism activist Mandy Chivers spent seven years fighting for doctors to take her seriously, and Lily was ten by the time doctors finally agreed on a diagnosis of autism.

Lily, who is now twelve, is finally in a school which specialises in helping autistic kids, but her road to this point has been marked by misunderstanding and mistreatment. At age six, Lily was locked in a cupboard by a teacher; in another school, which claimed to be able to serve autistic needs, a teacher asked Chivers to make her daughter promise not to have meltdowns in school, which are a common experience for autistic children when they feel overwhelmed.

Medical professionals refused to help Lily, apparently reluctant to give a diagnosis to a girl. Chivers says that people from the council regularly responded with, “oh, she’s pretty – oh, she might grow out of it – oh, she doesn’t really look autistic”. By contrast, Chivers’s son, who is also autistic, only took three years to be diagnosed. Lily kept being prescribed drugs to treat ADHD. “My daughter was so high she got about five days’ worth of words out in about two minutes,” Chivers says, but was told by the NHS that if they refused the drugs they’d be discharged from the system. One professional asked Chivers if she knew what “kids in special schools looked like” when she insisted Lily needed to be sent to a specialist school.

Four and a half months ago, she set up FIGS – Fighting Inequality for Girls on the Spectrum. It now has 1850 members across the country, and works to advocate and raise awareness. Other online initiatives, such as the #doilookautisticyet hashtag, are helping to emphasise the stereotyping inherent in the present approach.