10 parents of autistic kids share what they wish they knew at the time of diagnosis, tips to help their children thrive
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Raising a child with autism spectrum disorder or ASD — can feel challenging and isolating. And yet it's something more and more parents are experiencing. About 1 in 36 children in the US has been identified as having ASD, according to the Centers for Disease Control and Prevention. That means that millions of families are learning how to parent neurodivergent children. Insider spoke with 10 parents and caregivers of people with ASD about their tips for supporting and encouraging neurodiverse kids, plus the things they wish they knew when their children were diagnosed. Here's what they had to say.
Make a schedule
Having a routine is critical for neurodiverse families. Many people with ASD find comfort in knowing what to expect, so having a schedule is important.
"My son responds much better when he is prepared for what is to come or can plan his time," Alison Angold, mother to an 18-year-old with ASD, said.
Mark Joseph used a schedule to help his 6-year-old conquer potty training.
"This helped him understand what was expected from him and made it much easier for him to achieve success," he said.
Get visual
Lots of families have found it helpful to use visual cues to help their children process the schedule. Whitney Ellenby has used pictures at every stage to help her 22-year-old son with ASD.
"We use visual aides with simple, concrete written explanations of what to expect for every adventure," she said. When they fly, for example, she has cards showing the boarding process, take off, time in the cabin, and landing.
Kim Stewart found that her 25-year-old son coped with unexpected disruptions better when he could literally see how they would impact his day.
"Life often happens and causes a schedule change, but if we're able to show him the change visually, prepare him and show him when a certain activity could be rescheduled if needed, it goes much smoother, and we're able to avoid difficult behaviors," she said.
Finding what works for your child might take time
While tools like visual cues and schedules help many families, there are no one-size-fits-all solutions for people with ASD.
"Every child is different, so it's important to determine what strategies and methods work best for their individual needs," Omar Al Hassan, whose 6-year-old has ASD, said.
Reach out to other parents for help, listen to what's worked for them, but don't be afraid to leave behind what doesn't work for your family, Al Hassan said.
Help your child communicate
People with ASD have various levels of verbal ability. Whatever your child's skills, it's important to help them develop a way to communicate, says Ellenby. That might be talking, written communication, sign language or a typing keyboard she says. What matters is that you can reliably communicate with each other.
Use positive motivation
Stewart once set up her sons' favorite train set in the bathroom in order to help her son get more comfortable using the toilet.
"We also provided new reinforcers only available at school (not home), so he could be rewarded according to his behavior plan and have something to look forward to," she said.
Ray Hemachandra used a spinning chair to help coax words from his son when the toy lost speech at around 6 years old. For each sound his son produced, he'd get one spin. Eventually, they moved on to using simple words like "ball" or "door" to get three spins.
"All this was done in a fun, supportive way, building skills positively and step by step," Hemachandra said.
Ask for what you need
When Stewart's son was starting school, she knew he'd be more comfortable after seeing the classroom. So, she reached out to the teacher so her son could visit the class. While there, Stewart took tons of pictures.
"We would take pictures of the room setup, the teachers, as well as different locations within the school that he would be transitioning to throughout his day," she said.
Reviewing the pictures at home made him much more comfortable when it was time to go to school.
Practice, practice, practice
Rich Seiber's son was nervous about riding the bus to school. So, Seiber started taking a church bus to Sunday service with the boy.
"We didn't need to do this; we had transportation," Seiber said. "But I wanted him to get comfortable with it. This allowed him to get familiar with riding the bus while I was with him."
Be patient with the questions
Stacy Haynes has learned to practice patience with her neurodiverse children and 10-year-old nephew with autism.
"Asking 'why?' is not disrespectful, it is how they need to understand why things are the way they are," she said. "Always give explanations."
Build your team
Building a team of professionals who are experienced in working with autistic individuals has helped Lucy Banks' autistic 8-year-old thrive.
"Leaning on our team of experts has been a huge game-changer for us," she said. "My son is a completely different child to who he was prior to his diagnosis, and that is because we trusted our team, and they have taught us so much."
Know when to say no
Trusting the experts is important, but parents also need to know when to say no to interventions and therapies, says Ellenby.
"Be prepared to abandon or adjust any therapy programs to adapt to your child's specific needs if the strategies you're using are not working," she said. Ellenby recommends giving any new intervention six months. After that, if you're not seeing changes, it's ok to stop.
Embrace the joy
Author Jan Stewart has written about the challenges her 35-year-old son faced growing up. But amid those, she learned to embrace the joy that he brought to her and others.
"He was recently at the barber, and as is his custom with his lack of filter, he chatted up everyone in the room," she said. "When it came time to leave, the barber informed him that he didn't have to pay because the customer who had just left had been so impressed with him that he had paid."