This week’s story comes from Tess in Tasmania. She discovered her own autism with the help of her daughter and is now an advocate for the neurodiversity movement. Her blog is called Neurodiversity Goddess, which contains content specifically relating to autistic females and their family and friends.
Tess’ Diagnosis Story:
I am a late diagnosed 42 year old woman from the far north west of Tasmania, Australia. Throughout my whole life I felt different to others, but never really knew why. I had previously been diagnosed with ADHD at the age of 4, and panic disorder when I was 26, but in recent years felt like these diagnostic labels didn’t quite explain all of my challenges, and there was something more or something missing. I had cared for my brother-in-law for 8 years who was autistic with an intellectual disability and worked as a counselling therapist, but throughout this time I had not even pondered that I could be on the spectrum. It seems silly now, but I think I thought that autism was only something that affected males.
I started learning about the unique traits and characteristics of autistic females last year, around the time my 7 year old daughter was being assessed. When I was researching autism in females, the stories and characteristics were so familiar to me. I watched a video of a woman speaking about what being autistic was like and it was almost as if she was telling my own story. When my daughter was having her autism questionnaires completed, it painted a picture of the little girl that I also was. I felt I couldn’t ignore that fact that I was most likely autistic too, so I sought out a professional assessment. I felt like someone had handed me a key to a box that held all the answers to why I had felt different my whole life and felt like I had never really fitted in. It explained my challenges I had experienced in the social world, education and employment, as well as the gifts I had of high intelligence and a highly complex mind. I underwent an assessment with a psychologist experienced in diagnosing females on the autism spectrum, which confirmed I was autistic, and I experienced the start of what I would call a revolution in my life and world.
After my diagnosis, I felt a mixture of elation and terror, which is probably common for many late diagnosed females. I felt happy and excited that I had an explanation for who I was, that I had answers to my life and a greater understanding of how my brain was wired, but I also initially felt scared about what having a diagnosis of autism meant for me personally and professionally. I feared it would change how people viewed me or how it might affect my future employment opportunities. I also experienced what I would call an identity crisis, where everything I had thought and believed about myself was being reprocessed and reframed through now knowing I was autistic. I went through a period of grief as I mourned the loss of opportunities or help I may have received if I was diagnosed as a child, and how my life path may have gone with extra support. I processed trauma and loss for the way I had been misunderstood, treated, bullied and even preyed on by both other children and adults throughout my life. I spent a lot of time reprocessing past experiences and behaviours in my life through the autistic lens. Post-diagnosis was intense, emotionally loaded and took lots of my energy as I unpacked my life and moved through to acceptance of who I was. Around the same time I was also working through my daughter being diagnosed and getting support and therapists in place for addressing the challenges autism brings her, and physical health issues with Ehlers-Danlos Syndrome. Last year was probably the most mentally, emotionally and physically demanding year of my life, but also the start of the most empowering journey I have been on yet.
The neurodiversity movement was a game changer for me. It helped me to go from thinking that I was a human being with a “disorder”, to embracing my different mind and the gifts it brings. I felt myself shift from trepidation to acceptance, and even pride for who I am. This is what I am also modelling and teaching to my daughter, and anyone else I can along the way.
As I worked through to where I am now, I felt a passion emerge for raising greater awareness and acceptance for autistic females. I was inspired by other autistic people I had met and connected with after my own diagnosis, and felt that I had a lot to share with the world about autistic females, as well as smashing the myths, stereotypes and negative beliefs about autistic people. I connected with my neurodiverse community (see links below), and I “came out” (for want of a better word) as being autistic. I joined the board of a major autism organisation and most recently started a Facebook page for empowering and supporting autistic females and those who know and love them (Neurodiversity Goddess). I am hoping that by being open about my journey as well as advocating for autistic females that I can foster better or earlier diagnosis for females, as well as creating a sense of community and validation for those who have already been diagnosed.
I may have been late diagnosed, but I believe it is not too late to make a difference for myself and other autistic females.
Below are some links that have been a big part of my journey
Autism Tasmania: https://www.autismtas.org.au/
The Sisterhood Society: https://www.facebook.com/thesisterhoodsociety/
Spectrum Women: https://www.facebook.com/spectrumwomen/
Yellow Ladybugs: https://www.facebook.com/yellowladybugs/
H2Au:the stuff of our life: https://www.facebook.com/H2Au.thestuffofourlife/
Autism Womens Network: https://www.facebook.com/AutismWomensNetwork/
Jeanette Purkis: https://www.facebook.com/jeanettepurkisbooks/
Becca Lory: https://www.facebook.com/BeccaLoryCAS/
Allison Davies: https://www.facebook.com/allisondavies.com.au/
One thought on “Diagnosis Story 16: Something More or Something Missing”
Thank you for all the links, Tess. Very useful !