Jenn Layton Annable
Autistic people matter. Autistic women matter.
There is, however, increasingly strong evidence that autistic people, in particular autistic women, can be subject to a whole host of mental health issues their neurotypical (NT) peers do not have.
Alternatively, they may be more likely to struggle with misdiagnoses or poorly understood co-occurring mental distress and illnesses.
Consider the following research findings:
- Autistic people are more likely to suffer anxiety and think about suicide than both non-autistic people and those who experience psychosis for the first time.
- Autistic people die at higher levels than the non-autistic population across every type of disease and condition, other than infections. Being a woman and labelled high-functioning both increase this risk.
- Autistic women are more likely to successfully die by suicide than autistic men, (a reversal of risk for their non-autistic peers).
- One-fifth of inpatients or day patients diagnosed with severe anorexia also meet the clinical threshold for an autism diagnosis.
- Autistic women are far more likely than their non-autistic peers to experience premenstrual syndrome (PMT) than their non-autistic peers.
- A large percentage of women diagnosed with Borderline Personality Disorder also score above the threshold to be diagnosed as autistic.
‘The poor and inappropriate ‘care’ I was subject to’
Writing as a diagnosed high-functioning autistic woman this places me, statistically, in one of the highest risk groups within the autism cohort. I am sorry to say that my personal experience also bears this out.
Since 2012, and the birth of my first child, I have been subject to repeated mental health crises that have included stays as a hospital inpatient and in crisis houses.
In my case, as I now realise, much of the poor and inappropriate ‘care’ I was subject to actually made things much worse for me and my family. This is my first-hand experience of the ignorance, misinformation and poor support that abounds in services about the interaction between autism, gender and mental health challenges.
It not only exposes autistic women, when they are most vulnerable, to delays in their recovery, but it can also actively traumatise them. The end result is ultimately that autistic people are dying and being detained in psychiatric hospitals unnecessarily, as the tragic publicity around the failure of the Transforming Care Programme, which was supposed to get autistic people out of hospitals and into homes, demonstrates.
Research must be front and centre
Research. Solid, high-quality, participatory research, must take its place front and centre if we are to begin to unpick some of these life-threatening issues and ensure that these experiences of autistic women and girls in the UK’s mental health system cease.
Positive steps are being taken by researchers beginning to explore the correlations between mental health and being autistic.
Autistic autism researchers are beginning to put forward alternative concepts for what autism is, such as the ‘double empathy problem’ (in which autistic people consider NT people to be as different as we are to them, and so may always to struggle to understand each another) or the ‘monotropism’ interpretation of autism (that constructs deficit-based autism traits such as restricted interests in a more positive light).
These alternatives challenge the medicalised deficit-based model that has been the dominant narrative about autistic people since the difference was first identified in the 1940s.
We still have a great deal of work to do though.
The underrepresentation of autistic voices
Genuine autistic voices are excluded from research. The preferences of autistic people about the research priorities they would like to see studied are still woefully underrepresented in academia, with much of the focus remaining on causes and cures.
Major autism organisations still portray autism negatively; as a ‘thing’ which destroys families and steals away their loved ones. Autistic people’s human rights are still violated, every day, by people they consider friends, or professionals employed to support them.
This is the reality for autistic people like me, living in the UK and struggling to build and enjoy lives and enjoy positive mental health and citizenship like their non-autistic peers. These autistic people are possibly a family member, a friend’s child or even you.
So, what can you, or we, do to ensure that autistic people matter? That autistic women matter?
Jenn Layton Annable is in the final year of her MSc in mental health recovery and social inclusion. She is passionate about using research to improve the lives of people with autism, which is a central focus of Words That Carry On. This is a fund established in the name of Lindsay Riddoch and is being hosted by the McPin Foundation.
