My life has always had this strange sense of duality.
I was the high school outcast, lacking best friends or shared secrets, let alone friendship bracelets.
I graduated twice, but I just couldn’t bring myself to make eye contact with the attractive people in my classes.
I’ve worked professionally and was even sought after for a doctoral scholarship, yet at 31, I still find myself without a boyfriend.
It wasn’t until I was diagnosed with autism at 28 that everything clicked into place for me. My social habits, mental health challenges, and, particularly, my discomfort in social situations started to make sense.
For many women like me, autism is often diagnosed much later in life—if at all.
A recent survey noted that nearly 80% of women with autism aren’t diagnosed by the time they turn 18.
Historically, autism was viewed as a “male” condition, with boys being diagnosed at a rate four times higher than girls.
However, experts now understand that autism is actually more prevalent among girls and women than previously believed.
Still, the criteria used for diagnosing autism remain heavily biased towards the male experience, which leaves many girls and women undiagnosed and without the support they need.
Despite having a diagnosis, women with autism often encounter significant obstacles when it comes to finding the right kind of support.
Take my experience with the National Disability Insurance Scheme (NDIS), for example.
NDIS promotes “choice and control” for those involved, aiming to provide necessary support that enhances the quality of life and social skills for individuals with disabilities.
When I applied, I hoped it might provide me some help, especially given my feelings of isolation.
Without a partner and having lost both parents, I was in search of that assistance.
A year later, I finally received a call that felt life-changing. A woman with a cheerful voice told me, “I just wanted to let you know that you’re now a participant in the NDI.”
The relief I felt was immense, yet short-lived.
During my first planning meeting, NDIS staff asked me what support I was looking for.
I mentioned, “Psychotherapy and pelvic floor physiotherapy,” as well as “maybe a hearing aid for my left ear.”
Then the question came: “How do these relate to your autism?”
Somewhat awkwardly, I had to explain that my social anxiety and trauma manifest in a condition related to the pelvic muscles.
These treatments seemed to make sense to me—not just for healing, but because I wanted to build the confidence to engage in normal romantic and sexual relationships.
She responded, “Not everyone with autism experiences trauma.”
Her continued remarks weighed heavily on me, pointing out that there wasn’t a clear link between autism and the treatments I requested.
It was gut-wrenching.
Eventually, it became clear that while psychotherapy and physical therapy could be covered by NDI, the system still offered me speech therapy and support workers, even when I have no speech issues and can navigate life on my own.
As someone knowledgeable about disabilities, I understand why things fell through the cracks.
The NDIS, along with many services aimed at assisting those with autism, continues to lean toward a long-standing male-centric model of diagnosis and treatment.
This bias leads to a lack of understanding concerning how autism presents itself in girls and women, meaning that the necessary support often goes unprovided.
Yes, they offered me speech therapy because of my autism, but as a woman, it’s simply not what I need.
What I truly require is both physical and psychological support to rebuild my confidence and heal.
And it’s not just about my experiences with relationships.
Research indicates that women with autism often experience lower levels of sexual functioning and have an increased likelihood of facing sexual violence.
A staggering nine out of ten women with autism report having experienced sexual violence, and I am among them.
Despite these grim statistics, access to support for women with autism remains alarmingly limited, even for those deemed “high-functioning.”
Reflecting on my NDIS experience, I find myself thinking, “Why should this be so difficult?” Yet, it is, and that carries significant weight.
In noisy pubs, I struggle to hear conversations, often leading to feelings of isolation as others try to engage with me and then leave disappointed.
Eventually, I find myself retreating, overwhelmed and in tears.
On social media, friends are sharing milestones like engagements or family photos, and it stings—a reminder of what I long for but can’t seem to reach.
I remember moments at a gynecologist’s office where pain overwhelmed me, accompanied by waves of shame for feeling so unprepared.
What would a speech therapist say about all this?
