My Life with Autism
My life was always characterized by a strange duality. I was dux of my high school, but I didn’t have a best friend to share secrets and friendship bracelets with. I concluded my degree with a two-piece degree, but I couldn’t make eye contact with the sweet boys in my classes. I work professionally and was done with a doctoral scholarship with a headhole, but at the age of 31, I have never had a friend.
Diagnosis and Understanding
The shame of my difference was all-consuming until I was diagnosed as autistic at the age of 28. Finally, my life made sense: my sensory quirks, physical health struggles, and especially my "social awkwardness". For many women like me, an autism diagnosis comes later in life – if we are ever diagnosed. According to recent investigations, almost 80% of autistic women at the age of 18 do not remain diagnosed.
The Struggle for Diagnosis and Support
For a long time, autism was seen as a "male" disease, with four times as many boys being diagnosed as girls. Now, however, experts recognize that autism is much more common in girls and women than previously assumed. Nevertheless, the diagnostic criteria for autism remain male, which means that girls and women are often not diagnosed and not supported. However, even with a diagnosis, autistic women are often denied appropriate support.
My Experience with the National Disability Insurance Scheme (NDIS)
When I applied to the NDIS, I was confident that I would finally get help – support that I need especially because of my social isolation. I have no partner, and my two parents died. After a year of waiting for my application, I got a life-changing call from a woman with a sunshine. "Just calling to let you know that you are now a participant in the NDIS," she said. The relief flooded over me, but it was short-lived.
The Lack of Understanding and Support
In my first planning meeting, an NDIS employee asked me what support I would like to have. "Psychosexual therapy and physiotherapy of the pelvic floor," I replied. "And maybe a hearing aid for my left ear." "How are those related to your autism?" she asked. I explained how my social fear and trauma are stored in my pelvic muscles, a condition known as vaginism. I made it clear that one day these therapies would give me trust and physical ability to have a normal romantic, sexual relationship, just like everyone else.
The Reality of Autistic Women’s Experiences
Studies show that autistic women often have a poorer level of sexual function, feel less good in sexual relationships than autistic men, and also have a higher risk of becoming victims of sexual assault or abuse. According to a recently conducted study, 9 out of 10 autistic women experienced sexual violence. I am among them. Despite such statistics, the support for autistic women is scarce and difficult to access, even for so-called "high-functioning" autistic people like me.
The Need for Change
I think it shouldn’t be that difficult. But it is. And it has real effects. In a pub where the noise worsens my hearing disability, I can’t really hear the guy that approaches me to talk. He finally gives up and apologizes politely and goes away. I have a panic attack and leave. On Facebook, I see how old school colleagues post about their partners and children. On Instagram, I see that one of my oldest friends announces their engagement. I wonder what a speech therapist would say. The underlying current of medical misogyny drives ignorance of how autism presents in women and girls and why "reasonable and necessary" support could be.
Conclusion
I need physical and mental therapy so that I can build my self-confidence and heal my traumatized body so that relationships are not terrifying and so that sex is not painful. I am not alone in the fight with romance and sex. It is time for change, and it is time for autistic women to receive the support and understanding they deserve.
