Is a gendered approach to Neurodiversity helpful?
For a long time, it has been thought the ratio of Autistic males to females was 4:1. However, some studies are now suggesting the rate could be closer to 2:1.
This change is due in part to an increased awareness that women and girls can present quite differently, and clinicians are increasingly adapting the illustrations around the diagnostic criteria to reflect this.
An interest in mathematics and dates, and special interests in trains, vehicles, and engineering have traditionally formed the basis of the illustrations used to clarify the diagnostic criteria for Repetitive and Restricted Behaviours (RRBs). Many Autistic women and girls exhibit the same behavioural qualities but have entirely different interests. Often the topics are far more in line with cultural norms e.g., animals, pop stars and authors. And because these interests have been judged to be “culturally normal”, they have not been viewed as evidence of Autism, more as typical childhood “obsessions”. Therefore, as markers for Autism they are ignored.
This historical bias has led some researchers to investigate the idea of a female phenotype of Autism. Such an approach could play an important role in addressing the imbalance in the diagnostic tools. However, there is more to the gender question than simply male versus female. Not all females present as per the female phenotype and in the same way not all males will present as the traditional male oriented criteria describe. A binary approach is not going to cut it.
For example, how many men have masked their struggles, survived the education system and chosen to work in industries where their difference may be seen as an asset or just more common, therefore unremarkable? The IT and engineering industries being stereotypical examples of this. These men and boys, not disruptive at school, camouflaging just enough to get by, likely represent a hidden and underdiagnosed group too. Would it occur to these men, struggling to understand why they experience life in the way they do, to read literature discussing masking in Autistic women and girls? Probably not unless they have already been asking themselves questions about their gender. This means a whole lot of shared experiences may remain completely off their radar.
And there’s more:
Anecdotally it seems being Neurodiverse increases the likelihood of a person being part of the LGBTQ+ community. There are now several pieces of research confirming this with further research suggesting the number of Autistic and ADHD people not identifying with their assigned-at-birth sex may be as much as seven times that of the general population.
Autistic people already struggle with exclusion from the Neurotypical world. Demarcation of Autism along traditional gender lines has the potential to add yet another layer to this, particularly as, in some countries, societal change means more and more people feel able to embrace their non-binary and transgender identities. Even if the gendered illustrations are broad, the fact they would still be associated with either male or female is unhelpful for those individuals who may not feel they fit either label.
The implications of a missed diagnosis or misdiagnosis for any of these groups can be substantial:
- Difficulties with relationships and employment remains confusing and distressing, not only in terms of attainment and employment, but also in terms of isolation, anxiety and depression
- Suicidality – 7 times more common in the Autistic community than in the general population
- Inappropriate medication (where a misdiagnosis has occurred) can lead to a feeling one’s life has been “wasted” or “passed in a haze” – phrases used by Autistic interviewees
- Low self-esteem and self-doubt leading to unhappiness and underachievement
- Unable to access appropriate and timely support
- Increased risk of maltreatment where vulnerabilities remain unidentified
The Autistic community is still dealing with the impact of decades of gender bias against women and girls as it is. The last thing we need is to create more minority groups simply because they do not conform to male or female phenotypes. Society likes simple stereotypes and in promoting a binary approach we could simply be creating a new set of problematic myths.
Some researchers are beginning to talk of broader, generic illustrations being the way forward. It is my feeling this is the way to go.
There is a lot more information about the issues raised here in The Undercover Autistic: Navigating Your Diagnosis