by Dr Catriona A. Stewart
Autistic girls and women have been described as being like swans – appearing to glide across the surface of life but paddling furiously under the surface just to keep afloat! Until recently, it was believed there were substantially more autistic males than females, with a ratio of approx 4:1, and the gap widened in autism with no co-occuring Learning or Intellectual Disability to approx 9:1. It is now becoming widely accepted that females with average to high intelligence, those who might have, in the past, attracted a diagnosis of Asperger syndrome, may especially be misdiagnosed or overlooked.
There is a range of possible reasons for why this might be the case, including that most previous research has involved male participants and therefore expectations are that autism is a ‘male thing’ are perpetuated. It has been suggested the tools used to assess females may not be not appropriate, but an alternative interpretation might well be that clinicians applying the available assessment tools for autism must use their professional and clinical judgment with few trained in, or knowledgeable of, autism in girls and women. It’s important to note that some of the aspects of autism presentation identified as being specific to girls and women are not necessarily so. It’s possibly more that our awareness and improved understanding of what autism means in females has helped to challenge some of the stereotypical ideas of autism in a general sense. For example, the often-cited abilities of girls to ‘mask’ their autism (to glide like swans…) is also reportedly experienced by some boys and men.
It’s believed that some of these characteristics are at least more common in women but it’s also important to remember that the expectations on individuals - the social pressures, the strategies and tools available for managing day-to-day life - are not gender neutral in a gendered society, and much will depend on the life circumstances of the individual autistic person, their family, their personality, the resources and opportunities available to them and also of course, any co-occuring conditions.
Despite our increased awareness of autism in girls and women, professionals working in the field of autism and other general practitioners including teachers, GPs, social workers, health visitors, police... may not always have had access to the kind of training or experience that would support their work effectively when they come into contact with autistic women or girls. They may not recognise the possibly ‘atypical’ presentations of autism or be aware of some of the specific needs of this population. There is very little in the way of female-informed service provision or even strategy, in terms of specific educational needs, health-care, including maternity and post-natal services, mental health support and so on. When women begin to identify either their daughter or themselves as having autism traits it may be difficult to have family or friends understand, as there is so little available information and the general understanding is still of autism as mainly affecting boys and men.
Underpinning all my work is a commitment to retrieving the authentic autistic voice and lived experience not just as valid but essential; those experiences and voices are increasingly signposting academic and clinical research directions and adding to a richer, more helpful narrative around autism, which has historically been presented in stereotypical and very negative terms. That negative language and stereotyping can cause a great deal of damage to the sense of self, mental health and well-being for the individual young person or adult. I have worked passionately for years to change the language and perceptions of autism, especially as effects females and their families and to create a positive form of visibility, identity and relational community for autistic girls and women.
By Dr Catriona A. Stewart, chair of Scottish Women's Autism Network (SWAN) (@CatrionaSScot)