Rising From the Ashes: My Journey With Autism and HSAM
From the time I was born I’ve always felt autistic and I can remember every day of my life. As a toddler I enjoy organizing the cutlery drawer, reading the street directory and doing jigsaw puzzles. I did that so often I hardly ever played with my more “age appropriate” toys. Cuddling and showing any other form of affection has always been unnatural to me. Whenever someone tried to hug me, I screamed in fright. The same thing happened if I was given a plastic cup which was an unexpected color.
Mum strongly felt I had autism, so at the age of 6 she took me along to get assessed by a psychologist. Despite having virtually all of the classic characteristics, we were told I couldn’t be autistic due to the fact I had a separation anxiety disorder with my mum. They also said my unusual characteristics were a result of stress from my parents’ divorce and I would outgrow them all. I continued to receive psychotherapy for childhood depression, but it was treated as a temporary aid.
I struggled with school and had no extra support in the classroom. Once, I was awake until the early hours of the morning (for three nights in a row) completing an assignment. On the third night, I finally managed to complete it and went to bed smiling because I was so happy with myself. Yet, I sobbed the next day because I was given a detention for not reaching the standard which the teachers called acceptable.
At the age of 15 (in 2005) mum insisted on getting me assessed once again for autism, and this time I came out with a diagnosis. Everyone in the room was in agreement it was unfortunate this had come so late in my childhood and especially school career. Yet, we were told it was common for females to miss a diagnosis because ASD traits can express themselves differently for us.
My early adult years were the hardest of my life. I was depressed because I had no idea who I was or where my passions lay. Due to my depression, I was unable to think about my future at all. Instead, I was intensely fixated on my past.
In early 2011 my parents called me inside the house to watch a “60 Minutes” episode about a group of people who had Highly Superior Autobiographical Memory (HSAM). The people in the show were able to relive every day of their life since childhood in precise detail. I thought that kind of memory was completely “normal” and I couldn’t understand why the story was describing it as incredible.
My mum and stepdad believed I too, had HSAM and asked if it was OK to send the University of California, Irvine — who were studying the people in the segment — an email. I wasn’t expecting a response because I knew our email would be one of millions, we live all the way in Australia, and I certainly wouldn’t consider myself a “lucky” person.
Amazingly, I did receive a reply in a mere two weeks.
After a variety of thorough tests, the UCI officially diagnosed me with HSAM in May 2013. I do most talks with the McGaugh/Stark lab over Skype (in the early hours of the morning Brisbane time). Occasionally I visit them in California and get to enjoy the Universal and Disney parks. Since May of 2016 the Queensland Brain Institute/University of Queensland has been doing a study of my case simultaneously.
My involvement in research has also gotten me into a few media stories. In October of 2015 “Press Association” wrote an online article about my HSAM and autism (in addition to me being so obsessed with Harry Potter that I’m able to recite the books each night to enable me to fall asleep).
Little did I know within six hours that story went viral worldwide, and all throughout the next day media were contacting me from everywhere. “Good Morning Britain” decided to have me featured on their show, so my family and I were told to be at our local television station in just a few hours time. The story aired via a cross-studio broadcast. I was also featured on “Channel Seven News” here in Australia and “Sunrise.”
I must mention here live television is terrifying beforehand but feels great while on air and afterward (much the same as how HSAM research tests and public talks at seminars feel to me).
There have also been a fair few magazine stories I’ve been in, including “Woman’s Day,” “Take 5,” “Logan Magazine” and “Real People UK.” When it comes to newspaper articles, the list is enormous. Many newspapers from around the world picked up on the “Press Association” story, and it’s been featured in articles of — literally — every language.
Most recently I was featured in a “60 Minutes Australia” story alongside another participant in the UCI’s HSAM research study, Markie Pasternak. Part of the epsiode was filmed in my house, and the other half was filmed in the United States. This included footage of me at the University of California Irvine, and also at the new Harry Potter park at Universal Hollywood.
As a career, I blog for a company called “SpecialKids.Company.” In addition to making and selling purpose-made clothes for children with disabilities, they also provide written support for people of all ages with disabilities (including autism). I’m also doing public talks on the topics of human memory, autism and anxiety.
I can be found on Facebook under “Teens and Adults on the Autism Spectrum.” At this moment we’re an online support group where our family shares articles, posts news, and I myself do monthly webinars. We’re hoping our community will eventually grow further so we can expand our support into the offline world. Our content is 100% G-Rated. Though our main focus is to help autistic people in the age groups who get overlooked in mainstream funding.
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