Does your child scream if he can’t wear his favorite shoes? Does he enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Does he fear the toilet, the market, the dentist?
This was part of a post about “The Thinking Person’s Guide to Autism” left by Shannon Des Roches Rosa, mom to an 11-year-old son with autism, as well as a high-profile advocate and educator for autism awareness.
If so, take note — he’s trying to tell you how he feels and what he needs from you: behavior as communication, she continues.
“Pay attention to cues — what is your child trying to tell you?” says Lynette Fraga, PhD, VP of Early Care and Education and Special Populations at Care.com. “Parents and care providers have to be incredibly responsive and sensitive to children with autism regarding their behaviors,” she says, imparting a necessary vigilance and hyper-awareness on the part of the parent.
Amanda Friedman, co-owner and director of Emerge & See Education Center, agrees, adding, “We need to become translators of our children’s behaviors.”
After speaking with several child development experts and parents of kids with autism, we highlighted the four most challenging autism behaviors and provide advice on how to best handle them.
Sleep can be tough for kids with autism, as they tend to have highly sensitive nervous systems. Even the slightest variation in their day can affect their sleep for the night.
“We have to be extremely careful not to give Leo anything that has any caffeine,” says Des Roches Rosa, who lives in Redwood City, Calif. “He can’t have any chocolate after 3pm or he will be up all night. He’s a very active, athletic boy, so we make sure he gets a lot of exercise during the day. If not, he also doesn’t sleep.”
Many parents find that creating a nocturnal oasis helps a lot. Eileen Riley-Hall, author of “Parenting Girls on the Autism Spectrum,” says to think sensory-wise: room-darkening shades, a white noise machine, weighted blankets. “Basically anything you can do to make sleep more appealing,” suggests the mother of two teenage girls on the spectrum.
But beware the common pitfall of unwittingly enabling their irregular sleeping habits, says Friedman. “A lot of parents feel that when their child wakes up in the middle of the night they have to get him something to eat, turn on the TV, and immediately cater to the fact that he stirred or woke up as opposed to bringing him or her back to bed. It’s just a matter of teaching their bodies that it’s still nighttime and we’re not going to start the day just because you woke up.”
One way to do this, Friedman suggests, is through visual supports like the TEACCH program method: “Show them a picture of a clock and a picture of Mom and Dad and say, ‘You can come into our room when your clock matches this clock.'”
Autism Speaks offers free downloadable toolkits, one of which is all about sleep.
“Kids with autism are historically tremendously picky and selective and limited in what they will eat,” says Riley-Hall. “It’s a sensory thing; you have to have lots of trial and error, certain textures, certain foods.” When her girls were younger-they are now 13 and 11-she didn’t make them eat anything they didn’t want to eat: “For me it’s more important for mealtime be pleasurable. Everybody eats more if they feel relaxed, so in the past I have made them something different to eat and then we all sat down together to eat.”
Alison Berkley, co-owner and co-director of Emerge & See Education Center talks about a tactic learned from Susan Roberts, an autism educator and consultant with a specialty in picky eaters.
Getting your child to eat a variety of foods starts with expanding their tolerance level: “It doesn’t even need to be that the child eats a new food but that they tolerate it being on the table,” says Berkley. “At the next meal they tolerate it being on the plate and then they tolerate just touching it. Then you can slowly expand their repertoire of food.”
She recommends a slow, gentle and positive approach “because you want them to take their fear and anxiety around food and transform it into a sense of empowerment and a sense of control.”
Meltdowns happen, that’s a given. What matters is how prepared you are and how you can minimize their occurrence.
“Don’t put your child in over his or her head,” warns author Riley-Hall, who is also an English teacher at an inclusive high school in upstate New York. “I have parents I talk to who say, ‘Well, everyone is going to Six Flags for the day,” and I’m like, ‘Well, you might not be able to do that.’ If you know it’s a situation where it’s going to be really long or really difficult, you’re just sort of setting them up. You have to accept that there are limitations that come with having a child with autism.”
With a tantrum, the child is still in control, they want to get their own way, explains Riley-Hall. With a meltdown, they can’t calm down and at that point either they’ve gotten themselves so upset or so overwhelmed they’re no longer in control of the situation. “And they can be difficult to judge,” she says. “It’s really important not to always give in to meltdowns because you’re afraid of them. The basic thing is to hold them and calm them and wait until they can calm down themselves. I know some kids have really egregious meltdowns, so it’s important not to put them in a situation where you think they may have one but if they do, just keep them safe and soothe them in whatever way you know works until they can recover.”
If a tantrum happens in public and unwanted eyes (and comments) are directed your way, you can curtail further scrutiny simply by handing out pre-made wallet-size cards that say things like, “My child has autism,” with a website listed for them to learn more. You can get these through various autism organizations or make your own.
Aggressive and self-injurious behaviors are fairly common in children with autism, says Des Roches Rosa. When her son Leo acts aggressively, it’s usually due to sensory overload or frustration with his inability to communicate his needs effectively. “Most times, when people better understand the basis for the aggressive or self-injurious behavior and then accommodate or support the person with autism, things can improve dramatically,” she says.
Des Roches Rosa swears by data tracking: “We keep scrupulous notes about Leo and his behaviors and all the factors in his day.” Having done this for years, De Roches Rosa incorporates notes his day: what he eats, how much he sleeps, even whether his father is on a business trip. “We can actually identify seasonal behavioral arcs. So when something is wrong, we can go back and figure it out.”
Certain things can set Leo off, says Des Roches Rosa. “Like a change in barometric pressure, which can really affect his sinuses. When he’s acting out there’s usually a reason for it and in almost all cases we can find out what it is.”
But when Leo went through an extremely violent phase, Des Roches Rosa called in a behaviorist. “A good behaviorist is purely there to analyze and understand and come up with positive solutions for behavioral issues,” she explains.
So what does Des Roches Rosa do when Leo’s in the throes of aggressive or self-injurious behavior? “We have to consider safety first,” she says. “We move away, we say very loudly and clearly, ‘Stop’ or ‘No’ and make it very clear with a very different, very strict tone of voice that what he’s doing is not okay.”
Something to Remember
“If you know one child with autism, you know one child with autism,” says Dr. Fraga, referring to a popular saying within the autism community. She adds, “There is so much diversity in terms of how autism plays out with each child. The idea that everyone is the same is mythical.” This uniqueness can be embraced as well as prepared for.
Julie Z. Rosenberg is a mom to two kids (one of whom has hemiparesis) and lives in Brooklyn, New York. She has written for ParentDish, New York Times’ Motherlode and HuffPost Parents, and produced a monthly column on Park Slope Patch, called You Don’t Know Jack, about navigating the complex world of being a special needs mom.