This month is Autism Awareness month—and everywhere you go, parents are pledging funds for autism programs and research at walkathons, beef-and-beer nights and silent auctions being held across our region. This type of financial support is great and necessary, but so is practical support on a day-to-day basis. And when it comes to autism, that can be trickier to give.
What, exactly, is autism and how comfortable are we in dealing with those who have it? It’s a question people are asking nationwide. Former Philadelphia Eagle Rodney Peete, whose son R.J. is autistic, is a big part of that conversation, having written Not My Boy! A Father, A Son and One Family’s Journey with Autism, in which he offers kids and parents tips on how to better understand the disorder and communicate more effectively with those who have it. Taking a cue from Peete’s book, Suburban Family asked area experts and parents of children with autism to shed some light on these rarely talked-about aspects of the issue.
What Is Autism?
It may seem a simple question, but the answer is quite complex. Autism is a developmental disability that’s frequently described as being on a spectrum, with the term autistic spectrum disorder (ASD) referring to an individual’s degree of functioning in three areas: speech and communication, social and emotional relationships and behavior. While people with ASD often exhibit similar characteristics, the degree of severity differs in each case. There are many people with autism who function successfully at school and work, while others struggle with simple tasks. One individual may have minor difficulties with speech and communication; another may not be able to communicate at all.
Like many kids with autism, 5-year-old Tommy Ellison from Egg Harbor Township was once affected by sensory experiences in a negative way, causing him to have unpredictable outbursts many people found difficult to understand. “He would struggle with loud noises, crowds and changes in routine,” says his father, Tom Ellison. “Tommy often couldn’t touch shaving cream, because he would react harshly to the texture of it. Many autistic people struggle with the feel of certain objects.”
Those on the spectrum may also perform self-stimulant behaviors, or repetitive actions, like repeating the same word or organizing items in the same way over and over again. “This can make it difficult for [autistic people] to develop peer relations, since [most patients] aren’t interested in what others are doing,” says Sharon Jurman, senior director of Early Childhood and Outreach Services at Bancroft Neurohealth in Haddonfield. “They may also experience difficulty learning through traditional teaching methods.”
Finding Common Ground
Whatever teaching methods they do respond to, autistic children are often afforded the opportunity to learn alongside so-called “normal” students in inclusion classes all over the area. The year her autistic son, Jordan, joined a fifth-grade inclusion class at Woodcrest Elementary School in Cherry Hill, Debbie Schmidt hoped his classmates (and their parents) would understand what her son was going through—but wasn’t sure they could. This concern led Schmidt and Christy Carlson, the parent of another autistic child in the class, to found the nonprofit organization Just2Moms (Just2Moms.com), through which they created a kid-friendly assembly and DVD they take to schools throughout the tri-state area to help explain how children with autism experience the world.
The film features four social situations that could be challenging for children with autism: a birthday party, a beach outing, an afternoon on the playground and a trip to the movie theater. All of the events encompass a wide variety of sensory experiences—the smell of a birthday cake, the feel of the sand at the shore, the loud noises during a movie—that could adversely affect kids with ASD.
“At a birthday party, for instance, so many of the activities are announced: ‘Now we’re going to cut the cake.’ ‘Now we’re going to blow out the candles.’ It’s all transitions, and transitions can be very difficult for kids with autism to deal with,” says Schmidt. “They could react to a sight, a sound, a smell—you can never predict what’s going to happen.”
Despite the possibility of a disruptive reaction, people who don’t have ASD can still communicate successfully with an autistic child. Ultimately, Schmidt says, “in a situation that might involve a child with autism, you should treat that child like you would treat your own child or family member.” And that’s something you can teach your kids.
If your child is already in an inclusion class, his or her teacher may or may not have addressed the issue in detail, other than explaining that certain students have different challenges and might be accompanied by a teaching aide. As a parent, however, there are things you can tell your children about how to treat those with ASD in a way that makes them feel more like part of the class.
Deb Dunn is the outreach director at the Center for Autism Research at CHOP in Voorhees. During autism-awareness workshops at local YMCAs, mom’s clubs, camps and parent organizations, she teaches people of all ages how to include autistic children in activities, by working through their behaviors to make them comfortable. “I try to talk about inclusion,” she says. “Many autistic children may not appear to be welcoming, so you have to seek them out. You need to make explicit invitations for autistic children to join in activities.”
Spending time with the same kids frequently also helps children with ASD, as playmates and their parents learn to relate better to the autistic friend. Far too old for playdates, Jordan Schmidt, now 14, has what mom Debbie calls “hang-out” time with kids in his class who aren’t on the spectrum. “They play video games, watch movies, sit at the computer—all the things that regular 14-year-olds like to do,” she says.
Schmidt communicates with the parents of these kids, letting them know about Jordan’s triggers and how they should deal with them should an outburst occur, and she praises their open hearts and understanding. “It’s not always a perfect situation, but my child wants the same things your child wants,” she says, “just to be like everybody else.”
Bancroft’s Jurman offers some concrete tips on how to communicate more effectively with someone who has ASD. These include making eye contact when you speak; communicating in short, direct language; and never touching a person with autism without permission. Schmidt concurs: “Every child with autism is so different,” she says. “Some are so huggable; some hate physical closeness.”
Outside school, when it’s likely that an autistic child will be accompanied by a parent, experts agree that the best thing you can do when you’re unsure about a situation is to ask questions. “Ask, ‘What’s the best way for me to communicate with your child?’” advises Jurman.
All children have difficulties in one arena or another, and an interaction with an autistic child is an opportunity to teach kids to be empathetic. “One [traditionally learning] child may struggle with math, while autistic children have difficulties with sensory overload… walking into a crowded room or joining a group of their peers,” says Dunn.
Letting kids know what life is like for autistic kids is a prime opportunity, says Ellison, whose son’s symptoms have now improved to the extent that he’s no longer exhibiting traditional autistic behavior. “It’s a chance to teach your children humility and to teach them how to help.”
Parents Teaching Parents
As important as it is to give children the skills to communicate with kids who have ASD, parents can also use a bit of help in this department. Because it’s not always evident by the way he or she looks that a child with autism has a disability, there is a great tendency for bystanders to engage in “surface judgment” when the child acts out.
“When you see a person with autism having a challenging moment, you don’t have to look and judge, thinking: ‘Why can’t the parent control their child?’” says Just2Moms’ Schmidt. “It would be great if other parents who see a situation just look at what is happening without judging.”
Bancroft’s Jurman goes a step further and encourages someone who witnesses a child having a meltdown at the park to walk up and ask the parents if they need help. Even saying, “I saw your child do something and I was wondering why they did that,” can open a door to meaningful dialogue.
This is particularly true when you see someone with a young child. Many autistic children aren’t diagnosed until about 2 years of age, so the parents and siblings of younger autistic children have new obstacles to learn about and cope with every day. “Parents, especially those with young autistic children, need others to be tolerant and recognize the stresses of the families dealing with autism,” says CHOP’s Dunn. “They need to be shown some support.”
Published (and copyrighted) in Suburban Family, April 2010.
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