Women’s Experiences of Being Autistic
‘You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other’
Kate Seers and Rachel C Hogg (2021) Autism 1–12 DOI: 10.1177/1362361321993722
This qualitative study* interviewed 8 Autistic women diagnosed as adults using semi-structured questions.The results were then anonymised and analysed. A few significant themes were found through their experiences pre-and-post diagnoses.
The researchers used a “social constructionist framework”, which examined how language and social interactions impacted the experience of being an autistic woman.
The women all reported similar histories pre-diagnosis. These included:
• Struggling to be appropriately “feminine”, being punished for speaking out or not dressing/ behaving as other girls/women.
• Feeling “awful” about their autistic traits or as if feeling anger/exhaustion because needs were unmet was a “moral failing”.
• Struggling with relationships or being at risk of emotional or physical abuse.
• Struggling to “reconcile the expectations of others.”
Barriers to Diagnosis
Being female made it harder for their Autistic Spectrum Condition (ASC) to be recognised. Because women are socialised to prioritise empathy and social skills, their difficulties were less visible and considered to be “gender appropriate” if they appeared shy, passive or immature . Special interests were overlooked if they conformed to gender expectations (people, fashion). Being less aggressive meant they were less likely to cause problems that would lead to clinical referral.
Sexist assumptions made the women feel especially trapped and under pressure to fit in and be feminine, and also made it harder to be diagnosed.Once Diagnosed, however, the respondents felt relief and that they had “permission not to engage in gender performance” and had “released the requirement to conform”. Some said they feared if they had been diagnosed as children that their development may have been suppressed. One said they felt their autism was different to that of males.
“Punishment of Function”
Once diagnosed the women had a new problem- if they were considered “high functioning” because of ability or achievements their needs were ignored. If they were seen as “Low functioning” due to having (for example) poor maths grades then they were disqualified from having ASC.
The researchers concluded that this is evidence that functioning labels only measure how well someone meets social expectations, “rather than underlying pathology”.
Rejecting the Deficit Mmodel
Some of the women did not consider themselves as disabled, pointing to achievements such as completing university, moving out on their own or starting families.
The deficit model of autism as diagnosed did not fit, leading to several women using the (outdated) term “Aspie”. One said: “we’re wired differently, we communicate differently, we work differently, but I don’t think we’re as far as the Autism.”
The study had a very small sample size and did not consider other aspects of identity such as sexuality or culture.The study did not look at co-occurring conditions such as ADHD or consider why some many Autistic women anecdotally report misdiagnosis with depression, anxiety or personality disorders.
The researchers support the idea that what makes ASC a disability is not the pathology itself but how society treats people with ASC. It’s status as a medically defined disability is challenged when we see the behaviours that lead to diagnosis as reactions to “restrictive socio-cultural demands”, especially gendered demands placed on Autistic women which have “negative consequences” for their sense of self.
A diagnostic label brings reassurance, but more support is needed to help women integrate this into their sense of identity and through transitional times of life. Expanding what is acceptable as gendered behaviour, or understanding gender as a continuity of different behaviours instead of a binary may make the experience of ASC less damaging for women.
The study also highlighted how the diagnostic process can be biased to exclude women who need support.