Adult spectrum diagnosis offers insight, relief to N.L. woman

“Nihil de nobis, sine nobis,” meaning nothing about us without us, was a rallying cry in disability activism in the 1990s.

For advocate Trudy Goold, the problem with the old way is clear.

“So many things are done by observation, as opposed to knowledge,” says the

St. John's, N.L. woman. “And when you're just observing, all you've got to go on is how you would interpret the behaviour that's going on. One of the big problems is it's just what a neurotypical sees happening, and they interpret that behaviour based on their own lens, based on how their brain works.”

Goold was diagnosed with Asperger's (which has since been rolled into Autism Spectrum Disorder, although there is still debate about this in the community) in 2012, when she was 35 years old. Until then, she had been left to navigate the particularities of her own mind without a framework to guide her. When she was 18, her mother brought her to a mental health centre to be assessed.

“At the time, my coping mechanisms were failing, and I was effectively turning into a shut-in. Not good for me,” remembers Goold.

“I had an hour-and-a-half interview with a psychiatrist, and got told at the end, ‘Well, if you're an Aspie, you're the most well-adjusted Aspie I've ever met.' And I just mentally went, ‘Thanks a lot ... not', because that was no help whatsoever.”

In the spring of 2007, Goold's youngest sister, who was studying speech pathology, forwarded three articles on autism.

“I managed to read through one-and-a-half of the three of them and burst into tears, had a meltdown. And we figured out later that it was relief,” says Goold. “Because I was seeing myself in these papers. It wasn't that my brain was a mess and I was lazy and a procrastinator, it was very black and white that that was me.”

In 2012, Goold went to an outpatient facility armed with information on autism diagnosis and the testimony of family members. She was able to obtain an official diagnosis. This designation opened up doors previously shut and led her to other people whose experiences were like her own.

“Not only did it give me access to the disability tax credit and the RDSP, because I was completely burned out and my sensory issues mean that I have problems getting a job, it also encouraged me to look more into autism,” says Goold.

“A huge part of autism is executive function issues, and I hadn't known about that until I actually started to do a bit more research after my official diagnosis. I started going to the blogs of other autistic adults.”

Goold has since learned that situations like hers are not uncommon for autistic women. The condition presents differently in women, so women are therefore less likely to be diagnosed early. They are better at appearing neurotypical. But there is a cost to putting up a front, and Goold believes we're just beginning to see it in the uptick of adult diagnoses.

“All those things added together, there are tons of girls and women from my generation and up who were never diagnosed. It was never recognized,” says Goold. “We're getting around the 30, 40, 50, 60 age, and we're burning out because of the sheer stress of masking, of appearing neurotypical, and we're left going ‘I don't know what's going on, but I can't do anything.'”

A science fiction writer, Goold used to use imagination as an escape. When she was younger, she found herself using it too often as an escape from discomfort or boredom, losing herself in other worlds while there were people right in front of her. Learning more about autism has helped her gain control of that part of herself.

“It's brought me into the here and now. It's helped make me more content with myself. I'm a lot happier with who I am now,” she says.

Her cats, Imber and Tarma, have helped get Goold through difficult times.

“Having my cats helped and has always helped. Cats are nice and cuddly, and a lot of autistics tend to get along well with cats.”

That isn't to say her imagination has faded away. She now uses it to help her sleep, or to generate ideas for her writing. Stereotypes of autism often portray individuals without imagination.

Armed with her diagnosis, Goold aimed her formidable creativity in her blog, tagaught.net.

“I'm pretty open. I went and created a blog of my own to pay forward what I'd gotten from the blogs of other autistic adults. When it comes to stuff about being autistic, i'm pretty open,” says Goold.