A large majority of respondents believed current diagnosis rates are under-diagnosing women relative to men
Respondents tended to cite social expectations and biased diagnosis tools for this
The online autistic community seems fairly diverse in terms of gender identity and age, and in particular there's a very large transgender and gender non-conforming population among autistic people in general
People on the spectrum, women, transgender and gender non-conforming respondents were more likely to believe current diagnosis rates are under representing women relative to men
Women and transgender respondents tend to have more sensory issues
Historically it has been presumed that Autism Spectrum Disorders are more common in males, especially higher functioning varieties such as the now defunct Aspergers Syndrome. Typically estimates of the rate of males to females range from a low of 4-to-1 to as high as 16-to-1 or more. However in recent years there has been a growing sense that females on the autism spectrum may be significantly under-diagnosed due to differences in the way autism manifests across gender and biases in diagnostic tools. Additionally, recent years have also seen more research into the relationship between autism and broader issues of gender identity, with researchers noting exceptional high rates of transgender and nonconforming gender identities among people on the spectrum.
To explore perceptions of this issue, I put together a brief informal survey which asked for respondents’ opinions on what the true gender ratio for ASD are. Additionally, the survey also collected data respondents’ gender identity, age and diagnosis status and their experience with any sensory issues. I administered the survey at various both various sites in the online autistic community, including r/aspergers, r/autism, r/aspiememes and the #ActuallyAutistic hashtag, and platforms for science and surveys including r/neuroscience and r/SampleSize. Over 3 days from August 31st to September 2nd I collected 531 responses from a diverse set of respondents. Here is a summary of the results
Before getting into the results, some things should be noted
Survey Targeting, Responses and Self Selection – This survey intentionally targeted the online autistic community, and for practical reasons also ended up mostly being disseminated in groups focused on neuroscience and social sciences. Moreover, being voluntary there was likely a lot of self selection in survey takers based on nuerodiversity and gender identity. Hence, overall results should not be seen as entirely representative of views held in the general population, nor are they entirely reflective of the demographics of the communities surveyed. The respondents to the survey are perhaps best understood as people with a relatively high level of investment and engagement with this issue, and the most interesting comparisons are perhaps between different categories of respondent rather than the overall results.
Gender Identity – This survey asked for transgender identity as part of the question on gender. As one respondent pointed out, this can be confusing or even alienating for transgender respondents, since they usually do identify as male/female. The wording of the question clearly distinguished between gender at birth and current gender identity so this should not be an issue, but it should none-the-less be noted. Additionally, there were a high proportion of respondents who identified as having other gender identities, including non-binary, agender, androgynous, and gender fluid. These responses will be collectively referred to as “nonconforming” throughout the summary, and will be combined with transgender responses where appropriate. This is not meant to overgeneralize or gloss over respondents, on the contrary one of the purposes of this survey is to highlight the diversity of respondents. It’s merely a practical shorthand done for the sake of making the results easier to digest.
Who took the survey
The survey received a large number of results from a diverse set of respondents both on and off the spectrum of varying gender identities and ages. Below is a breakdown of the demographics:
The Online Autistic Community
As noted, one version of the survey specifically targeted the online Autistic community. This survey received 155 responses from a wide variety of participants. Below is a breakdown of the demographics from these respondents:
These responses point to a community that’s quite diverse, and contrasts sharply with the commonly held image of the online Autistic community as being dominated almost exclusively by young men. Self selection issues aside, the community appears to represent a fairly wide cross section of people of different gender identities and age. Likewise, the disproportionately high rate of transgender and non-conforming respondents is both consistent with past research and points to an important intersection between the two communities.
Respondents were asked what they believed the true gender ratio is for ASD. The overall results can be read in the chart below:
Respondents were also given the option of providing a brief justification for their choice, which 202 respondents provided. These responses were categorized, based on their main content. The counts of these responses based on their content can be read in the table below:
Breakdown of Justifications Provided
Social Expectations and Biases in Diagnostic Tools 79
Personal Experience 60
No Elaboration Provided 27
No Reason To Believe There Is A Gender Difference 15
Genetics and Biology Reasons 12
Just a Guess 11
No Response 327
From these results we can make the following observations:
A substantial majority felt that current diagnosis rates under represent women, however a significant minority accepted them as basically correct
Overall, a large majority of respondents believed the true ratio of autistic males to females was lower. About 64% of respondents believed the rate was below the 4-to-1 rate commonly cited as a low range estimate for diagnosis, while 34% believed the true rate of males to females on the spectrum was roughly equal. A substantial minority of 35% still accepted the current diagnosis rates as basically accurate, with 21% believed the true rate fell in the lower range between 8-to-1 and 4-to-1 while 14% believed it fell in the higher range of 16-to-1 to 8-to-1.
Most responses skewed towards the middle range of estimates. A slight majority of 51% of respondents fell in the middle range of estimates, believing that the true rate of ASDs has a moderate skew towards males, less than 8-to-1 but still significantly higher than 1-to-1. Only 2% of respondents were on the extreme ends of the range, believing the rate of males to females was higher than 16-to-1 or lower than 1-to-1.
Of respondents who offered a justification for their answer, social norms and biases in diagnosis techniques were cited most frequently, followed by personal experience
Respondents offered a variety of justifications for their answers. The most common justification, cited by 79 participants, was that prevailing social norms tend to encourage women to mask autistic behaviors and make people less inclined to attribute them to ASDs. It was particularly noted that criteria for diagnosing autism were informed mostly by observing young boys on the spectrum, and therefor did not account for the fact that autism manifests differently in girls. Naturally, these respondents skewed heavily towards believing current diagnosis rates significantly undercount women.
The next most common reason given was personal experience, which was cited by 59 respondents. These responses were almost evenly split between those who accepted current diagnosis rates as basically correct and those who felt they undercount women. Many respondents pointed to their experiences seeing men more frequently in autism support systems and media portrayals, while others noted instances of women largely not being considered for ASD or having difficulty obtaining a diagnosis despite clearly displaying traits.
Genetic or biological factors were occasionally mentioned, such as theories about radical gene expression being more prevalent in males and exposure to hormones during pregnancy. Conversely, many respondents did not believe there was a credible reason for rates to vary by gender, with some citing the diagnosis rates for low functioning autism which are closer to 1-to-1.
Respondents who believed current rates of diagnosis were somewhat more likely to say they were guessing or not provide a justification at all, suggesting they may just be accepting them as a default.
The high response rate affords us an opportunity to do a more indepth analysis comparing the views and characteristics of different groupst. This yielded the following insights.
People diagnosed with ASD were more likely to believe that the true rate of ASD among women was roughly equal or significantly about the current rates of diagnosis
There was a significant difference between the perceived true gender balance of autism between people who had been diagnosed as being on the spectrum and those who believed they may be on the spectrum and those who had not. About 50% of respondents who were not diagnosed and did not believe they were on the spectrum basically accepted current rates of diagnosis as being more or less accurate, compared to only 25% of those who had been diagnosed and 30% who believed they may be on the spectrum. Generally speaking, it seems the closer someone was to having a diagnosis the more likely they were to believe current diagnosis rates were under representing women.
Women, transgender and nonconforming respondents were more likely to believe that the true rate of ASD among women was roughly equal or significantly above the current rates of diagnosis
There was also a significant difference by gender identity. About 67% of women believed the true rate of ASD among women was below the current rates of diagnosis.compared to 50% of men. Transgender and nonconforming respondents were most likely to believe current diagnosis rates were under-representing women, with 86% believing the true rate was below the current diagnosis rates.
The rates of autism reported among male and female respondents was similar, but notably higher among transgender and nonconforming respondents. The balance of those who suspected they had autism versus those who were diagnosed was similar between men and women, while the proportion of diagnosed respondents was high among transgender and nonconforming respondents
Among respondents to the survey, the male and females reported being on the spectrum at roughly comparable rates of 53% and 58% respectively, and within those the proportion of those who were diagnosed versus those who suspected they were on the spectrum were similar at between 3-to-2 to 1-to-1. Given the targeting and self selection of the survey this is probably not reflective of the population. This is unfortunate, since it means we can’t really investigate issues like whether women need to resort to self-diagnosis more often or not.
However, the high rate of autism (85%) among transgender and nonconforming respondents probably is reflective of the population, as is the high proportion of diagnosed cases to those who suspected being on the spectrum (3-to-1). This is consistent with past research on the matter which has found that transgender and non-conforming populations have have high rates of autism, especially among transgender people born female who identify as male.
Women, transgender and nonconforming respondents who were diagnosed with ASD or believed they may be ASD were significantly more likely to have severe sensory issues than men
While large majorities of respondents on the spectrum reported having sensory issues, there were significant differences across gender, particularly based on severity. Among respondents who were diagnosed or suspected they may be ASD 24.5% of Women reported serious sensory issues compared to only 13.5% of men. The rate was even higher among transgender and nonconforming respondents, with 35.5% reporting serious sensory issues.
This may reflect differences in the way autism manifests across genders. Recent research suggests that women on the spectrum are more likely to have atypical sensory profiles. It’s likely social norms also play a big factor. Since the social/behavioral impacts of autism in women tend to be more obscured and misattributed, sensory issues may be one of the few things that might lead people and their therapists to seriously consider ASD as a diagnosis. Alternately, social pressures may encourage men to downplay their own sensory issues and refuse to acknowledge them as a problem. All this points to a need for greater appreciation for sensory issues when addressing autism.
All this points to an expanding understanding of Autism and its relationship to gender issues, at least within the realm of people with the most immediate stake and familiarity with the issue. Moreover there seems to be a widespread desire to correct for previous imbalances in support and recognition. Adjusting public perceptions and diagnostic criteria to make them more aware of the ways autism presents in females is widely understood to be an important step in helping women on the spectrum gain a better awareness of themselves and adjust accordingly. As are changing social norms which dismiss autistic traits in women, or which encourage them to inappropriately mask at the risk of developing depression, anxiety and various other mental health issues.
Similarly, our results serve to highlight the importance of recognizing the relationship between autism and non-cisgender identities. People on the spectrum are much more likely to have fluid gender identities, and even cisgender people on the spectrum often only associate themselves with the birth gender very weakly. This highlights the fact that trans issues are often neurodiversity issues and vis-a-versa, and creating broader acceptance for both is an important step for allowing people on the opportunity to lead fulfilling lives.
Men on the spectrum would benefit from this as much as anyone. While often framed as the “winner” in autism diagnosis and support, in fact a narrow and restrictive understanding of autism is almost as harmful to men as anyone. Most immediately, hurts men who themselves manifest autism in atypical ways. But just as important, it exacerbates the widespread social isolation and alienation that men on the spectrum tend to experience. While this survey should help put to lie many of the notion that the online autistic community is a haven for incels and the like, there are plenty of reasons why said communities often need to explicitly warn against red pilling and suicidal ideation as they can be prime targets for such things. Building an understanding that a wider swathe of humanity shares their issues and can be a source of mutual support can alleviate this.