When Iris Gray was young, she was always saying the wrong things.
If Gray was out shopping with friends, trying on dresses or a friend dyed her hair a new colour and she didn’t like it, Gray told them it didn’t look good.
Once during a family gathering, her father was forced to turn off a hockey game and Gray told her aunt and uncle how mad her father was for having to turn it off.
For Gray, she felt she was being honest rather than offensive or hurtful, however, it was her lack of social skills that began getting her in trouble. She admits she didn’t have many friends growing up and often felt isolated from other people at school including her siblings, because of the things she would say.
“I always felt like I was different from my brother and sister and from the kids at school. I never really fit in anywhere,” said Gray, who lives on the Songhees reserve. “I was always saying the wrong things and getting people mad at me, sometimes unintentionally insulting people and just being very blunt and honest.”
Growing up wasn’t much easier. After graduating from high school, she found it difficult to hold down a job. Because making eye contact with other people was “very overwhelming,” Gray did poorly in job interviews or other customer service jobs.
After a breakup in the early 2000s, it was her ex who sent her several links to pages on Asperger syndrome.
According to Autism Speaks, Asperger syndrome is an autism spectrum disorder considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviours.
“I thought ‘gee, this sounds like me’,” Gray said.
However, receiving an official diagnosis was not so easy. According to Gray, it’s extremely difficult to get diagnosed as an adult.
Patrick Dwyer facilitates Authors with Autism, a peer-support sharing and writing group at the University of Victoria, and said the high cost of diagnostic assesements as an adult, which range from $2,000 to $4,000, are a big deterrent for many.
“For someone who is already an adult, and who has just started considering the possibility that they might have autism, it is more difficult to obtain a diagnosis,” said Dwyer, who was diagnosed with autism when he was roughly 11 years old.
“It’s possible that young women on the autism spectrum learn to cope better on a surface level, which means their challenges are overlooked. So, you might say the first barrier to obtaining a diagnosis is learning that autism is even a possibility for them.”
When Gray was 36 years old, she was attending an employment program through the government and was able to take a neuropsychology assessment.
After eight hours of filling out forms, interviews and taking tests, Gray was diagnosed with Asperger syndrome.
“It was a huge relief,” said the now 48-year-old. “I already knew that this is what I had from reading about it, I just didn’t have the official diagnosis.”
Being diagnosed with Asperger’s or autism comes with its own set of challenges. While children who are diagnosed receive help from the government, there are few services for adults, said Gray, adding she was hoping to find employment support, help keeping her home clean, financial budgeting or meeting other people with the same diagnosis.
In 2015, Gray decided to start her own meet up group called Victoria women with autism and Asperger syndrome, specifically for women.
The group, which has roughly a dozen members, meets twice a month to talk about a range of topics from learning how to manage the disorder to Donald Trump.
Gray said the group has helped her connect with others and make friends — something she hasn’t been able to do in the past.
The group is also hosting the Austim’s Own Conference on Sunday, Aug. 21 from 3 p.m. to 8 p.m. at the University of Victoria’s Vertigo Lounge, which will include presentations and speeches from members of the autism community.
For more information visit meetup.com and search Victoria women with autism and Asperger syndrome.