An Autism Diagnosis Survival Guide
Expert advice for families, from parents who have been there
Photo courtesy of christa harder
Christa Harder of Charlotte with her three children, two of whom have autism. Her 7-year-old son Nolan, left, was diagnosed in 2013 when Harder was pregnant with now 5-year-old twins Neil and Nora, center and right. Neil was diagnosed with autism two years later.
Seven-year-old Nolan Harder of Charlotte was always a little different. As a toddler, he would lick the carpet and walls. He’d bang his head on doors. He didn’t speak until well after his peers.
And yet, when Nolan was diagnosed with autism at age 2, his mother Christa says the news still felt staggering.
“The beginning is awful for anybody,” Harder says. “I felt very alone. People kept saying, he’s just a kid, he’ll grow out of it. But he didn’t. It was like, is my child ever going to talk? Is he ever going to have friends?”
Harder’s experience is common. According to experts at the Autism Society of North Carolina, many parents feel overwhelmed, alone and anxious about the future during the first months after their child is diagnosed with autism.
“It’s like you’re running a gauntlet on a daily basis and it wears you down physically and emotionally,” says David Laxton, director of communications for the Autism Society of North Carolina. “Each person’s experience is different, but you don’t have to feel like you have to figure it out on your own.”
To help, we’ve compiled a few tips.
1. Get a medical diagnosis. A medical diagnosis is critical, says Jill Lorenzi, a medical instructor at the Duke Center for Autism and Brain Development. Not only will a diagnosis pinpoint your child’s needs, but without it, it may be difficult to access many of the services that will help your child most. “We know that individuals with autism learn differently, so focused help for the child’s needs are important,” Lorenzi says.
A comprehensive assessment includes a thorough evaluation of the child’s strengths and weaknesses, as well as screenings for additional medical conditions.
2. Take a breath. “I would say, the first step is to take a deep breath and recognize the freedom that comes with a diagnosis,” says Sara Passey, Apex mother of 12-year-old Max, who has autism. “I know that sounds strange, but when you know what it is, you have an idea of where to go. Getting a diagnosis lets you say, OK. This is a new adventure. Let’s go.”
It’s important to remember that your child is the same individual he or she was before being diagnosed, Laxton advises. Your child will continue to grow and develop, even if it’s at a different pace than his or her peers.
“It is not something that is the end of the world, but you have to pace yourself,” Laxton says. “It’s not a sprint. It’s a marathon.”
3. Start with evidence-based research. “You could spend all day and all night for years and not be able to scratch the surface of what’s out there (regarding autism advice),” Lorenzi says. “When you’re trying to find a few things that will work, it’s quicker to narrow down to evidence-based resources first. Anchor yourself to an organization like Autism Speaks or the Duke Center for Autism (and Brain Development).”
4. Reach out. Remember, you are not alone. Reaching out to other autism parents can be enormously beneficial, says Brenda Candland of Holly Springs, whose son, Franklin, has autism.
“Find other parents who have children with autism,” she says. “You’re not alone. Even though all autistic children are different, you all share a common goal: You love your child and want what’s best for your child.”
Laxton suggests finding a social media support group for tips and moral support, or connecting with the Autism Society of North Carolina, which offers workshops for parents and grandparents of the newly diagnosed throughout the year.
“Just being able to talk to somebody — to share what your fears are, your questions — having somebody you can talk to who’s been down that path is so much better than googling all night long,” he says.
Photos courtesy of Sara Passey
Max Passey, 12, was diagnosed with autism when he was almost 2 years old. His mother Sara, also pictured, encourages self-care and celebrating every small victory.
5. Take care of yourself. Many autism parents say it’s hard for them to find the right way to include self-care in their everyday lives. Some autistic individuals rarely sleep. Others become violently upset by anyone new, making finding a babysitter a distinct challenge.
The idea of “taking some time for yourself” can seem laughably unrealistic, Passey says, but it’s important to try.
“That kid needs you to be your best, and you can only do that if you’re taking care of yourself,” she says. “You don’t have to be removed from the situation. You don’t have to go anywhere. You just have to find something that fills you and give yourself permission to do it.”
Self-care could mean meditating for five minutes, taking the time to eat well, exercising, or writing a quick journal entry. Laxton says he knew one parent who recommended using a paper shredder for stress relief.
“You have to figure out what you can do so that you can be the best parent for your child,” Laxton says.
6. Have hope. “It’s not always doom and gloom,” Harder says. “It might feel that way initially, but it gets better. It’s still hard, and it isn’t fun to see your child struggle, but you figure out how to work around things. You’ll adapt. It does get easier.”
While an autistic child’s developmental process will be different from a neurotypical child’s, she will continue to develop.
“Continue to hope and dream for your child,” Lorenzi says. “You might have to tweak your goals or think about them a little bit differently, but there are so many strengths to be utilized and so many great things about people with autism.”
7. Trust yourself. Since every child with autism is different, you are your child’s best advocate. Your child will respond to some settings or therapies better than others. Trust yourself to know what makes the most sense for you and your child to try.
For Bridget Palys and her daughters Emma and Lily, who both have autism, the online classrooms of North Carolina Virtual Academy made more sense for them than a traditional school.
“With online school, they learn in a comfortable atmosphere where they both absorb their lessons without the distractions they experienced in the traditional school setting,” Palys says.
8. Identify resources. As autism awareness has grown, so have the resources available to families. Find out what’s available in your area, including autism specialists, autism-friendly summer camps, workshops and other information, by visiting autismspeaks.org or autismsociety-nc.org.
Autumn Linford works as a freelance journalist in and around the Triangle. She has a master’s degree in journalism and is the mother of three children, including a son with autism.