Nym Dawson, a peer mentor at Golisano Autism Center, was diagnosed at age 19. She shares his experience
By Deborah Jeanne Sergeant
Receiving a diagnosis of autism is not important only for tapping resources from the New York State Office for People With Developmental Disabilities.
Even for those who do not need that level of support, it’s good to know.
Nym Dawson, peer mentor at Golisano Autism Center in Rochester, was diagnosed at age 19. Now 30, Dawson said that autism is “one way the brain works. In discovering how your brain works, it doesn’t matter if it’s ‘neuromajorative,’ it’s the operating system. When you understand in the mode your brain operates, things make more sense.”
Dawson also believes that having a diagnosis is important for identity, understanding, developing coping mechanisms and possibly directing one’s career path.
“Right around when I got my diagnosis, I was working as a teaching assistant,” Dawson said. “I was working with autistic children and seeing similarities. I saw we weren’t that different, though there is a broad spectrum in autism. I help with life planning and that sort of thing. It’s given me an entire direction. And helped me understand who I am as a person.”
A misdiagnosis of bipolar as a teen didn’t fit Dawson’s experience. But working with a psychologist and reading an article about autism pointed towards autism. After testing, it was clear that autism was the answer. Dawson received a diagnosis through a now retired psychologist.
Unlike with children seeking a diagnosis, “seeking adult diagnosis is difficult,” Dawson said. “There are not a lot of places that do it that accept insurance. It’s private pay or you have to be seeking OPWDD services to get a diagnosis. It’s fairly inaccessible because of the expense.”
Thankfully, Dawson’s father paid the test’s $2,000 fee. Helping clients at the Autism Center figure out how to afford the test, which can range from $600 to $2,000 is one way Dawson helps more people access services and better understand how they think.
“I don’t diagnose, but I talk with people about it,” Dawson said. “I’m a big supporter of self-diagnosis because of how hard it is to get a diagnosis. Most people who self-identify aren’t people who see one video on the internet. They’ve gone through immense research. No one goes through life and says, ‘Yes! I’d like to be autistic.’ I will help people have those conversations and help people get answers.”
Dawson wishes that “fear mongering” about autism would stop — especially when used by organizations to raise more donations, as if it’s the “worst thing to happen to your child,” Dawson said. “Autism isn’t a good thing or bad thing. It just is. It’s neutral. If I do x, y, and z for myself, I’ll be OK. In the neurodiversity movement, we tend to view autism as something that is neutral and something that is good about ourselves. It’s part of self-esteem. I would not trade my brain for the world. As much as I have challenges, I wouldn’t want it to be anyway than what it is.”
Neurodiversity has helped shape Dawson into a more effective advocate for people with autism, a considerable asset for this type of work. The Autism Center has provided a few accommodations as required by ADA law. However, nearly all of how Dawson works is just like any other employee.
“In my office, fluorescent lighting is a terrible sensory thing,” Dawson said. “I have a light cover that makes it easier for me to work. I also have flexibility in my work schedule which is important.”
Sensory input that is bothersome varies among people on the autism spectrum, both in intensity and in type. Some autistic people may struggle to understand interpersonal relationships and to follow more subtle nuances of communication.
It’s helpful to work for an employer that “gets” autism. Not all employers would be this supportive and Dawson appreciates this, commenting, “I’ve worked with people who’ve had a hard time getting listened to. It does happen. But I’m lucky. When we talk about sensory challenges, it causes physical pain to our bodies. It’s not just bothersome; it hurts me.”
Having a diagnosis in hand helps people on the autism spectrum receive the accommodations they need. But more than any of that, Dawson is glad to have a diagnosis to feel a true identity with others who share the same experience.
“There’s a lot of isolation of being autistic as an adult and not knowing,” Dawson said. “We socialize in a completely different way than neurotypical people and that can be extremely isolating. A lot of people I work with don’t have a good community of people who they feel understand them. Once you identify yourself that way, you open up a world of people who are just like you and shakes off some of that loneliness.”
Loneliness can significantly harm mental health. Dawson added that the life expectancy of autistic people is much lower than the general population because of suicide.
Dawson invites anyone in the Rochester area to reach out and learn more about autism if they would like additional information or direction to resources that can help.
“Find other autistic adults whether online or in a local group or anything like that,” Dawson said. “Being with other autistic people will be helpful.”