A young adult with autism and two moms with kids on the spectrum share what they thought the future held—and how good it can be.
April is Autism Acceptance Month, and I wrote a feature for Parents magazine about the Future for Kids with Autism. As part of my research, I talked with autistic adult Lydia Wayman as well as Ariane Zurcher and Shannon Rosa, both moms to young autistic adults. We talked about what they thought the future would hold in the early days after an autism diagnosis, how the future has been brighter than they imagined, and what advice they have for parents of autistic kids. They had many insights, and I'm thrilled to share them with you!
Lydia Wayman, 28, is an autistic writer, speaker, and advocate with a B.S. in elementary education and a M.A. in English. When she was growing up, Wayman struggled with sensory issues ("full-blown aisle-7-of-the-grocery-store meltdowns") and finding community. Now, she lives independently with support, has a job she loves at a nonprofit, and her advocacy has led to opportunities to speak at national ASD conferences.
"Our autistic community wants to know your one-of-a-kind kiddo and help him or her feel like a part of things," Wayman says. "And we want to help you parents feel less anxiety about your children growing up and moving toward independence."
Lydia's best advice for parents: "Don't ask if your child can do something—ask how he or she can do it. Find the bridge (support, skill) that will span the gap between now and the goal. Some goals seem impossible, but the surest way to keep it out of reach is if the adults give up. The child who grows up asking 'how can I?' learns to see challenges as a chance for creativity and growth. He or she will say: 'I can and I will—watch me!'"
The Zurcher-Long Family
Things have changed a lot for the Zurcher-Long family since their daughter Emma got a diagnosis at age 2. After the diagnosis, her parents were given a list of all the things Emma couldn't do. But Emma, who's now 14 and who began writing in 2012, has wildly overturned the experts' assumptions about her capabilities.
"Had someone shown me a clip of our lives today," mom Ariane says, "I wouldn't have believed it. Emma is flourishing!"
Now, Emma is homeschooled, she types on a keyboard attached to her iPad, she's taking an English class and theater at a regular high school, and she's taken over the blog Emma's Hope Book. Emma also gives conference presentations and she's co-directing Unspoken, a first-person documentary about what it's like to be autistic.
"Find as many autistic people as you can and read their blogs," Ariane advises. "Go hear them speak, read their books, listen to them on YouTube, go to conferences created by autistic people. Finding people who shared my daughter's neurology made all the difference in the world because I saw autism was not something to be frightened of. If you are as fortunate as I've been, your entire life and your child's will change because of those friendships."
The Rosa Family
Shannon and Craig Rosa and their three children are quite famous in the neurodiversity/ASD world. Shannon is senior editor at the website Thinking Person's Guide to Autism, and son Leo was the "boy who loves green straws" in Steve Silberman's groundbreaking book Neurotribes. When Leo was first diagnosed at age 3, Shannon struggled with her own negative perceptions and worried about Leo being fulfilled, secure, and happy as he got older.
But, these days, Leo's all of those things. He still needs full-time supervision, but he also plays soccer, is a self-taught swimmer, enjoys traveling, is a regular at local cafes, and is learning to communicate more effectively with a symbol-to-speech device. In fact, the Rosas and their extended family often spend Thanksgiving at Cabo San Lucas in Mexico in order to have a "Leo-friendly" holiday once a year.
"Be smart about the advice you heed," Shannon says. "Be wary of approaches bent on 'fixing' your autistic child; look for resources about supporting and understanding autistic children, and how they process the world. And listen to autistic writers—some of the most helpful insights about parenting my son have come from autistic people."
Jamie Pacton lives in the Pacific Northwest where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com and Twitter @jamiepacton.