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Dr. Alexandra Johnston Ph.D

PhD, MAPP, GCER, GCUT, BEd, BArts
 

Academic, Social Anthropologist, Applied Positive Psychologist

Autistic Women Share Their Diagnosis Stories

"As Dr Stephen Shore notes, if you’ve met one autistic person, you’ve met one autistic person."

Dr. Alexandra Johnston Ph.D

Discovering how autism ‘fits’ me has been the single most significant discovery of my life. Far more significant than the theory I developed through my PhD. This complex process of understanding I might be autistic began through reading Hannah Gadsby’s memoir ‘Ten Steps to Nanette’, during the summer of 2022-2023. Hannah writes candidly about her experience of being neurodivergent and subsequently receiving an ADHD and Autism diagnosis. My partner Cherie and I both read Hannah’s memoir and observed significant parallels between Hannah’s story and mine. Being all too familiar with the pitfalls of self-diagnosis, I took a deep dive into the research literature. I am an academic after all!. Every step of that process was revealing, especially the difficulties associated with the pathway from hunch to diagnosis.

Through my literature review I located the research laboratory team Embrace Autism, intended as a platform to distribute research and experience-based information on neurodivergence. Dr Natalie Engelbrecht developed this body of work to empower neurodivergent queer, other gendered, people of colour and indigenous folk make sense of life and offer a strength-based lens to help acknowledge the full spectrum of attributes associated with neurodivergence. Embrace Autism offers access to validated screening tools, and links to relevant research. I completed every psychometric measure (and more) the site lists as being part of their screening process for diagnostic assessment. I scored very well! And cried a lot.

It soon became clear to me this pathway can be prohibitively difficult as neurodivergence in older queer women like me remains chronically underdiagnosed. I was determined to find accessibility and traction within the system. This was not a smooth process. Accessing a clinical specialist who works with neurodivergent queer adult women to perform the assessment was essential for me. After interviewing seven different neuroaffirming therapists, I signed up with the one who made me feel safest.

I anxiously awaited (a relatively short period of three months) to go through the clinical diagnostic process. This process would determine whether I am autistic, an ADHDer and/or an OCDer. I had huge difficulties sleeping during this time and found it nearly impossible to get myself to work. I entered into a cycle of meltdowns and eventually had to shut down all social engagements. During this time my lifeforce was sustained through engaging with neuroaffirming biographies and podcasts. I furiously took notes while reading and listening – just as a good social anthropologist should! I subsequently wrote a 45,000 word thesis, in which I organised relevant information aligned with the DSM 5 criteria to support my clinical diagnostic process.

As autism is a lifelong developmental condition, my thesis described how I was in the past, from early childhood, primary school, high school, university to the present. I reflected on when I first noticed the symptoms, with a focus on of how I function in both my inner world and the world outside. When I shared my thesis with the clinical psychologist who conducted my assessment, they commented that published clinical research about autistic queer late diagnosed women is lagging at least a couple of decades behind what is being presented in clinical settings – such as my story. They encouraged me to publish my 45,000 word thesis. This is my next big adventure.

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The Autistic Academic

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Quotes & Memes by Autistic Women
Resources/Articles about Autistic Women
Resources/Websites on Autism in Women
Resources/Videos about Autism in Women
Podcasts about Autism and Women

Do you have a formal diagnosis of autism? 

Grief on the Autism Spectrum
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