Barbie Swanson has carried the heavy burden of being different. Until age 38, she attributed her difficulties to character flaws. It was an easy conclusion to come to; after all, it was her obstinate, sometimes difficult behavior as a child that had earned her the label “troubled” and landed her in foster care.
“I have struggled in so many profound ways throughout my life,” explains Swanson. “I always just thought it was because I was a bad person.”
That all changed 10 years ago when she noticed striking similarities between herself and two children whom she babysat. Both children had been diagnosed with autism. This is when Swanson experienced, in her words, an “awakening.”
“I talked to their mom about it, and she told me she had no doubt that I was autistic,” Swanson recalls. “And that was why she wanted me to watch her children.”
Autism spectrum disorders are a group of developmental disabilities that affect behavior, learning, and interaction. Many people with ASD, including Swanson, contend with sensitivities to things like noise, food and light, which can lead to meltdowns and other forms of disruptive behavior. While the male-to-female ratio of autism is 4-to-1, it affects all races, ethnicities and backgrounds the same as 2.2% of the population has ASD.
“I am profoundly aware that I do, indeed,
have a disability,” says Swanson.
“And I would like not to have it.”
Even though Swanson has never fully shaken off the feeling of “being bad,” her official diagnosis of what was once known as Asperger’s provided a sense of relief, and this was the key to self-discovery. She obsessively researched her disorder, hoping not only to understand herself at long last but also to change in ways that would improve her life. For Swanson, this is an ongoing journey.
“I wish I could say that the diagnosis was my light at the end of the tunnel,” she says. “What I can say is that I am perpetually in that tunnel, struggling toward the light.”
“I really agonized over every decision I ever made as a parent.”
A quick Google search reveals that for autism and parenting, a large majority of the information available is for parents of children with autism as opposed to parents with autism. In fact, very little research has been done on this seemingly-invisible segment of the population, and even more minuscule are support networks for these parents. This lack of awareness leaves society unprepared to interact with and assist people like Swanson and might leave young ASD adults with the impression that having a family of their own isn’t in the cards for them.
Swanson learns everything by rote but had no positive parental role models from whom to study. Like many with ASD, Swanson tends to hyperfixate, which can be beneficial or detrimental, depending on the circumstance. In her case, she became overly focused on shielding her children from harm to the point of making decisions she now regrets.
“Overprotective is too lenient of a word in this case,” she says, coming to this conclusion after years of research and self-examination.
To Swanson, the road to happiness is paved with love. Therefore, she decided early in her children’s upbringing that if they felt loved, they would automatically have happy lives. Unfortunately, the world is not always kind, something Swanson knew firsthand. She endeavored to shield her children from any perceived threat of emotional hurt, sometimes in ways that were excessive or simply not beneficial.
“As a child, I didn’t understand it and it was quite frustrating,” says Colette McDonough, Swanson’s daughter, who can look back and see that her mother’s overprotective nature was rooted in good intentions. “She just wanted to keep us safe. And now that I’m older, I can understand that.”
Swanson is a big proponent of early intervention, believing her own path and decisions could have been dramatically different had she received her diagnosis at a younger age. For that reason, she urges people to seek out intervention sooner rather than later.
“If I had been helped earlier, my life would have been different, and I believe better in many ways,” she says. “I have a good life now, but I’m already 48! Life is so short, and I have bloomed so late.”
“Love is what matters; it is the only thing that lasts.”
Despite the challenges of parenting in a world not built with autism in mind, Swanson managed to achieve what she feels is the pinnacle of motherhood:
“My kids know I love them, and that is what I determined to do.”
For more information on autism spectrum disorders or to find support in your area, visit autismspeaks.org.
Barbie lives in Williamsburg, Virginia, with her fiancé of eight years, Nat Lasley. They both work at Colonial Williamsburg, where she is a bookbinder and he is an actor/interpreter. Some of her favorite pastimes include hiking, yoga and spending time with her granddaughter.