Time to fix the gender diagnosis gap for autism
As well as increasing global acceptance and understanding of the condition, this year’s Autism Awareness Month should be used to highlight growing and concerning gender diagnosis gaps.
Four times more boys than girls are diagnosed with autism, according to Spectrum News, yet more women are referred for a diagnosis in adulthood than men. This suggests they are missed in childhood and raises questions as to whether the prevalence of autism in girls is higher than those diagnosed.
Autism effects a range of behavioural traits, from difficulties with communication skills to repetitive behaviours and overreactive sensory experiences. However, medically and socially, society has grown accustomed to recognising autism through a male presentation. Well known hallmarks of the disorder, such as hyperactivity and fixated interests, tend to be heavily externalised by boys. Meanwhile, females internalise these symptoms, and may instead present with anxiety, emotional ‘breakdowns’, and more passive bouts of misbehaviour.
Whether due to genetic differences or social expectations, there remains a concerning gender gap in both research and diagnosis. The Autistic Girls Network (AGN) campaigns for better recognition and diagnosis for autistic girls. Their 2022 white paper, Autism, Girls, & Keeping It All Inside, outlines the key differences in presentation of autism in girls compared to boys. It addresses the stereotypes leading to late referral, such as girls simply ‘being shy’, and discusses the complications when autism is left undiagnosed.
As AGN boss Cathy Wassel recently said, “we need everyone to be able to see those young people who never raise their hand or speak up in class, who are situationally mute, who are on the edge of friendship groups, who have strong sensory sensitivities. ”
AGN’s paper also suggested that 20-35 per cent of females with anorexia nervosa may also be autistic. This evidence for an increased co-occurrence of autism and eating disorders in girls is lacking representation in autism diagnostic tools, therefore widening the gender diagnosis gap.
Within their white paper, The AGN lists key recommendations that would benefit both acceptance and diagnostic tools used in relation to autism. They suggest that the presence of co-occurring health conditions should act as a flag to referral for autism investigation, with diagnostic tools adapted to include typical female presentations as well as male. Improving research not only on autism in girls, but also the intersectionality of ethnicity, aging, menstruation, and menopause is needed.
“We need to get rid of the stigma as we have a whole generation of women who weren’t recognised and are only now realising why they have felt different, and often ‘not enough’ all their lives,” continued Cathy, “we need this to happen especially in schools, which can be very difficult places for our autistic young people. ”
As Autism Awareness Month draws to a close, the push for overall acceptance and understanding across society must continue. But so should the medical and research community be urged to take practical steps to shrink diagnosis gaps based on gender and ethnicity lines. It is essential for healthcare workers to understand gender-specific presentations of autism for diagnosis, consideration and education should be systemic.
