DULUTH, Minn. — Eighty years after its first diagnosis, people with autism are fighting to erase the stigma surrounding the disorder.

Autism spectrum disorder describes a group of developmental disorders that typically appears during early childhood, and affects a person’s communication and behavior. In 1943, child psychiatrist Leo Kanner first diagnosed early infantile autism in Donald Triplett, and attributed the disorder to poor parenting.

Triplett, who later became known as “Case 1,” died in June at 89.

Jillian Nelson is a policy advocate with the Autism Society of Minnesota, a nonprofit dedicated to supporting people with autism. According to Nelson, in the decades since Triplett’s diagnosis, autism has begun to evolve from something to be cured into a community of people.

“We’re seeing the development of taking back this diagnosis from a pathology to creating a meaningful culture and community,” Nelson said. “It’s so powerful because when we find places that we belong and when we’re surrounded by people like us, there’s so much support and understanding.”

Nelson grew up struggling in school knowing there was something different about her, and after several rounds of diagnoses, was told she had autism when she was 21. Although her diagnosis made her life make sense, Nelson said she hid her autism for years due to stigma and lack of understanding surrounding the disorder.

Finding other people in her community has helped support and validate her autism, Nelson said. However, she added people who do not experience ASD still view people with the disorder as others.

“We still look at individuals that have higher support needs and assume that because their challenges are more visible, that their lives are less valuable,” Nelson said. “I’d like to see us stop that and understand that where we really are in the world of autism is needing acceptance and appreciation across the board.”

Part of that acceptance comes through diagnosis, a process that has continued to evolve over recent decades, according to Nan Huai, a psychologist at Caravel Autism Health in Duluth.

Doctors diagnose ASD in children through testing including behavioral observation, conversations with parents and tools that have been developed in recent years to collect data, according to Huai.

Huai added that technology has significantly advanced in the last 20 years to provide more accurate diagnoses for children, but treatment plans are still often not what families expect.

“Out of love and hope for their children, some parents want autism to be cured,” Huai said. “Families feel this is something, a disease of infection, that can be gotten rid of.”

Nearly 3% of children have been identified as having ASD, according to the Centers for Disease Control and Prevention.

Whether it’s researching ways to activate kids’ brains or simply joining in their playtime to encourage social interaction, Huai said the earlier a child is recognized and supported as having autism, the more their lives can be changed for the better.

“As far as current science tells us, this is a lifelong condition, and what we are doing through therapy is teaching kids how to manage, cope and survive despite some of the barriers brought by autism,” Huai said. “Children with autism have a lot of wonderful characteristics. They are different, but no less.”

Shannon Swegle, who lives in the Rice Lake area, first noticed her son, Jack, was developing slowly with social skills and speech when he was 14 months old. After continuing to notice signs of autism, doctors diagnosed Jack with ASD in 2020, and the family has worked with Caravel since it opened in 2021.

“I remember there being lots of tears on my end, just fears and anxiety about the future,” Swegle said. “The official diagnosis, it’s bittersweet, but it definitely helps open doors for further support.”

Caravel and people in the ASD community helped Swegle determine next steps for Jack following his diagnosis. While she considers her family lucky for the support they received, Swegle said they had to navigate treatment without information, social workers or even county-provided disability services for more than two years.

Additionally, Jack’s parents went on their own journey to accept their son, and eventually became advocates for other members of their family or people in their community who do not understand ASD or the people that experience it, Swegle said.

Jack, now 6 years old, remains largely nonverbal. However, despite his diagnosis, Jack enjoys pictures and books, and loves potty jokes and making his family laugh.

“It’s not all doom and gloom. There’s so much joy with our Jack,” Swegle said. “He’s made me a better parent than I ever would have been before because you have to be a very present parent, and he’s made me more open-minded about other people.”

© 2023 Duluth News Tribune
Distributed by Tribune Content Agency, LLC

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