This is a story of a hidden diagnosis of Autism (Aspergers) in my life.
Autistic women are, however, still likely to remain undiagnosed. A survey by the National Autistic Society found that 42% of females have been misdiagnosed, compared with 30% of males, while twice as many women were undiagnosed compared with men (10% compared with 5%).
The Gardian – Autism: ‘hidden pool’
of undiagnosed mothers emerging
I have known that I am on the Autism Spectrum since 2013. My assessment and diagnosis came in 2012 when I was in my thirties. I responded with utter disbelief.
I was experiencing Autistic burnout and living with my mother. I didn’t know what to call it at the time. I just knew it as Depression.
I couldn’t understand how easily my mother, who I’d moved in with, could believe that diagnosis when I knew it wasn’t true.
I finally realised it was accurate in 2013 when I heard Dr Tony Attwood on Conversations with Richard Fidler. He described a lot of my life story, in that interview about women with Aspergers.
I too couldn’t relate to the girls at the schools I went to. I had an elusive sense of a self. My journey into living as a male for a few years made more sense.
I too had been diagnosed with a psychotic condition due to escaping into imagination. I too saw contexts everywhere. Seeing patterns Dr Attwood calls it.
Over the years I met women on social media who are also on the spectrum. In real life I could occasionally see characteristics in other women.
It saddened me that I couldn’t turn to an important figure in my life. My mother.
After years of on again, off again research, I had realised that she was a narcissist.
Uncaring. Shown for instance when I couldn’t breathe from an asthma attack. She came in the room, patted my shoulder and handed me a tissue for the vomiting. Then she left to go back to watching tv.
Unreliable. She burns food all of the time. Frankly, I find it inedible at times. Horrible and unexpected in others. Unexpected things give my body a shock. That’s part of the Autism.
Controlling. She’d carry out triangulation. It’s where she would collect and pass on messages between family members. Making sure she was the centre of attention and could control our relationships.
Cruel. She stepped on her dog sometimes. No matter how many times she told it to get out of her way, it would still walk between her feet.
Like I said, she was a narcissist. I was clear on that and didn’t speak to her for four years.
A Feeling of Dread
I have a group of supportive women with Aspergers around me. We are in a closed facebook page. Its been a safe space. A lovely escape from the cruelty that sometimes even our family members can display.
Recently I read a post in that closed group that gave me a feeling of dread. It was an Autistic mother explaining how her kids ostracized her. How they wouldn’t eat the food that she’d accidently burnt.
Within a couple of hours, I sent my mum a message.
Its been a while since we spoke at Kat’s house.
I am wondering how you are doing?
How is the weather treating you? Are you in kind of summer clothes yet?
How are you?
I have a feeling of dread that I have been too hasty in thinking you were uncaring. Like when you would burn dinner, or didn’t call the ambulance when I couldn’t breathe once in Rockhampton.
Maybe you were overwhelmed and it took a while to process what was going on.
Maybe you also have a short memory for things to do, and as you would say – scattered.
These things I can relate to.
I read a post on Facebook from a mother who burned dinner a fair bit. It made me think of you.
I forget to do things within minutes, or if I walk somewhere else.
I can be clumsy when I am thinking of something else. Just this morning I dropped a lighter as I was closing a door with the other hand.
Please write back.
I feel ashamed that I haven’t spoken to you in 4 years.
I am sorry for being close minded.
She rang me back. Over two conversations we had realised that she has Aspergers. My mum is on the Autism Spectrum. One of the mass of women who have gone undiagnosed.
It truly can be a hidden disability. I can understand now how some people *sometimes* can sometimes misinterpret our traits. Think we are uncaring. I couldn’t see that before.
Women Were Refused Diagnosises
Professor Baron-Cohen made popular a ridiculous theory that dismisses that women can have Autism. If they do have it, it’s an anomoly, according to him.
Many doctors and psychiatrists routinely refused to see or diagnose Autism in females – around the world – until recent years.
I met a medical student doing her placement with my GP a few months ago. She was nice, but seemed skeptical with what I said about females being under diagnosed. I gather that this knowlege – that females are just as likely to have Autism as males – may not be taught or emphasized at University.
It is currently much more likely for a girl or female teenager to be diagnosed as Autistic than a woman. Even then many parents have to fight for their child’s diagnosis.
The professor who made popular the Extreme Male Brain theory is coming to finally recognise women with Autism:
Professor Simon Baron-Cohen, founder of the Autism Research Centre at Cambridge University and the Class clinic, dedicated to diagnosing adults with autism, agreed: “[Undiagnosed mothers are] definitely a growing phenomenon. Putting a number on it is impossible but I’m sure it’s a big number because women seeking diagnoses of autism were likely to be dismissed until just a few years ago, because autism in females was thought to be very rare.”
The Gardian – Autism: ‘hidden pool’ of undiagnosed mothers emerging
You know why she kept stepping on her dog? I think it was a mix of a few things. Partly a short memory, partly not being able to concentrate on walking and thinking at once (it’s why we can have a stilted or unusual gait) and partly a lack of sensory feedback in her feet. Plus her dog was constantly needing attention.
What I thought was triangulation and controlling our conversations? I’ve felt left out and separate for a fair chunk of my life. I know what its like to want to feel part of a group. An integral part of a group. I think she wanted to feel part of something.
To be fair, this is the second time in my life I’ve contacted her with a realisation that she hasn’t been intentionally mean. This time however, I can understand the source of her being ‘addled’ and ‘forgetful’. (I’m writing about it in my autobiography eBook series. It will be in the one for my young adult years.)
Putting things in context makes a huge difference. Its like I can see the ultimate reason for her actions, not just forgiving individual actions.
Here I have been trying to raise awareness of being a female on the Autism Spectrum. I didn’t even see that my mum is just like me. That I am just like my mum.
Late age Assessment
DISCO Assessment tool for assessing adults with a late-age diagnosis of Autism Spectrum.
The ADOS can be used to evaluate individuals at different developmental levels and chronological ages. From toddlers to adults, from those with no speech to those who are verbally fluent.
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Google search terms
Learn how certain characteristics are specific to females on the Autism Spectrum:
Google search: Tania Marshall’s list of traits of Autistic females
Google search: Characteristics of women with Aspergers.
Google search: Autism traits in girls
If you would like to learn more about what caused me to move back in with my mother as an adult, you may like to read my eBook:
Successful to Burnt Out: Experiences of Women on the Autism Spectrum
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