ELLSWORTH — With 1 in 54 children identified as having autism spectrum disorder (ASD) in 2016, according to the federal Centers for Disease Control and Prevention, there are more families than ever looking for guidance and support on helping children cope.
“It’s very individualized for every child,” said Rachel Bousquet, director of education and residential programs at KidsPeace in Ellsworth.
As the name suggests, the disorder is a spectrum, with kids (and adults) falling on all levels.
“Some individuals you’d have very little idea,” said Meaghan Allen, a certified behavior analyst who works with children at KidsPeace. Those with milder forms “might be very interested in a particular topic and have a hard time going away from that topic. That might be somebody on a level one or level two.”
Others might repeat or echo words or phrases, have trouble making eye contact or repeat actions over and over again. They may be sensitive to sounds, harsh lights, or even things like too much clutter or patterned wallpaper.
“When you’ve met one person with autism you’ve only met one person with autism,” said Allen. “We work with children on one end of the spectrum to the other.”
KidsPeace’s 12-acre campus on Graham Lake remains open for kids who board there and may not be able to return home. The center’s kindergarten through 12th grade day treatment center has closed for the time being. Just like parents across the country whose schools are closed, parents of children with ASD are now finding themselves in the role of caregiver and teacher.
“What do you do when you’re used to having all of these supports that aren’t as accessible right now?” said Allen. “The biggest thing is to be able to forgive yourself. Everybody’s going to survive and get through it. We all make mistakes and we all learn from them.”
For those at home with children on the autism spectrum, routine is key, said Allen. “Keep consistency. Predictability is really important, I think, for individuals at large, particularly with individuals with autism.”
Hands-on activities can be helpful, said Allen, but try to do just one at a time, to keep kids from being overwhelmed. “It depends on what the child is able to take in.”
Backyard scavenger hunts are a good idea, said Allen, as is “working in down time with no expectations.”
“Try not to be stuck inside all day.”
The Autism Society suggests allowing extra time to accommodate schedule changes and using clocks and charts to explain when schedule changes will occur. Building a blanket fort or having a designated quiet space may also be helpful for children with sensory processing issues.
“Our clinicians are in contact with families at least weekly if not daily,” said Allen. “Of course, some children are really excited at the prospect of missing a school day. Others are really missing that structure and realizing how important it was for that socialization piece. They’re missing their friends.”
There are also a number of good online resources to keep kids engaged: museum tours, live feeds from zoos.
“There are so many educational games out there,” said Allen.
It’s also important for parents to take a break, if they can.
“I think right now is really the best time to encourage kids to engage in some more independent activities,” said Allen, adding that of course “some supervision will certainly be necessary.”
Even setting up an activity in the same room, said Allen, might allow parents to have a little down time.
“I think the take home message is really just be as creative as you can but know that mistakes are OK. Some parents, depending on the severity of the case and how many resources they’re able to access, it’s OK and it’s going to be OK. Reach out to all of the resources you possibly can.”