Getting to be a valued member of their community should be the norm for all kids -- but for kids with autism, it is too frequently not the case.
Media stories are full of parental struggles to get their kids with autism included in the larger community. Stories of exclusion from the public school system, from restaurants, from stores and airplanes are commonplace. The "no one came to my kid's birthday party" has become somewhat of a genre in autism circles. And, if you know any autism parents, you'll know the exclusion of autistic kids from extracurricular activities or field trips is a regular occurrence.
In other words, kids with autism are too often systematically excluded from their communities. But this has costs -- for everyone.
Here's what real inclusion looks like.
Over the years, we've had many calls from our son's school -- addressing his particular anxieties, his learning challenges and his inability to sit still and focus for long periods of time. Our son, Casey, has autism, a neuro-developmental disorder that is often characterized by rigid and repetitive behaviours, difficulty with social communication and uneven intellectual development, among many other challenges. Regular participation in an integrated public school has not always been easy for him.
So getting a call from Casey's school was not an unusual event. But this day was a good day.
The teacher told me that Casey went to his weekly choir practice, but the choir master was running late that day. Normally, choir starts with a warm up. The choir master sings a line and the kids sing the line back in a call and exchange format.
The choir master finally arrived but she was still trying to get organized and the kids were getting restless. Unprompted, Casey stood up and sang the first line of the warm up -- the choir master's usual line: "Stand up" -- he sang quietly.
All the kids settled, and then stood, and sang in response, "Stand up." Then Casey sang the next line, "Feet apart." And the kids responded, singing, 'Feet apart.'
Casey led the choir through their entire warm up as if it was the most ordinary moment. The choir master stood back, amazed, and watched the little magic happen. It was a moment of community, and Casey was an integral part of it -- heck, he was the ringleader.
Evidence now shows that meaningful "peer interactions" with typically developing kids offers those with autism significant social and intellectual benefits -- while at the same time benefiting those who interact with them as well.
A meta-analysis of 'peer mediated interventions' examined 45 distinct studies conducted over several years and concluded that teaching typically developing kids to both mentor and befriend those with autism was "highly effective" at promoting lasting positive social interactions. This was true across genders, age groups, settings and kinds of activities targeted. Interestingly, it was found to be most effective in 'natural' play settings versus clinical settings.
The studies ranged widely from establishing a "buddy system" -- pairing a neurotypical child with an autistic child (peer networking) -- to peer mentoring (children teaching children) and group play, where all the children in the group work toward a common goal. As the researchers noted, the results weren't just temporary but had potential long-lasting effects and helped seed the ground for improved language skills, adaptation to other integrated settings and more positive and long-lasting relationships with peers.
So the kids with autism benefit tremendously when their community includes and engages them meaningfully in natural play and learning. But what about the typical peers?
Turns out, they like and learn from it too. In a study that engaged typical peers in the social learning of kids with autism, the children were surveyed afterward. Eighty-three percent of the typical peers said they "enjoyed it very much" while 17 percent said they "enjoyed it." Teachers also reported the benefit of students helping each other, valued the promotion of tolerance and understanding, and felt it could reduce bullying.
Teaching all kids how to interact meaningfully with each other is real community building in other words, and has benefits for all.
We've been fortunate that Casey has been part of an integrated public school that knows and practices community building daily. It's not just part of their pedagogy, but part of their value system as educators. Casey's taking control of the choir that day wasn't just a demonstration of his leadership abilities -- a pleasant surprise to all of us -- but was a demonstration that he knows he belongs, and the kids do too.
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Say “hi,” introduce yourself, ask questions... just be yourself. And don’t be horrified if your child asks why our child looks different or "talks funny." Instead of shushing them and pulling them away use it as a teachable moment. You can even ask us to help. “You can tell if someone has good intentions,” shares Louise Kinross, the mother of a young adult with a rare genetic condition and creator of the BLOOM blog.
Parents of children with special needs appreciate the help or will tell you if they don’t need it (please don’t automatically step in and start wheeling our kids around, though). And if you’re the friend of someone who has a child with special needs offer a cooked meal, a coffee date or an hour of babysitting. Our stress levels are sky-high and we always appreciate an offer or real, specific help.
Staring is rude, but if you feel compelled to stare at least offer up a smile. But don’t worry if you just happen to be staring in my kid’s direction while in a sleep-deprived, zombie-like state -– we’ve been there and we won’t hold it against you.
“A friendly smile and/or a hello is so much more welcome and goes a long way in breaking the ice,” says Liza Sneyd, mom to two children with cerebral palsy. And teaching your child to smile is a lot easier if you’re flashing us a grin yourself.
Invite us to playdates and to birthday parties. If you’re not sure how to accommodate our child or how they can participate in activates, just ask us. We’re usually experts in modifying or figuring out creative ways for our kids to enjoy the things that other kids like.
“Hold the door for my daughter instead of letting it slam shut on her and her wheelchair,” says Lana Jones, who has a teenage daughter with cerebral palsy. “Don’t step in front of my son’s wheelchair so he can’t see,” shares Barb DeRoo, mom of a son with cerebral palsy and creator of Zach’s List.
Despite the fact that I get asked to write articles like this, I am not a perfect parent. My kid can get on my very. Last. Nerve. She can also warm my heart like no other -– just like any kid. When you say: “I don’t know how you do it,” my answer will always be: “It’s simple. I do it because this is my child and I love her. It is all I know.”
More often than not parents of kids with special needs have a strong belief in the strength and resilience of their kids. Our kids face insurmountable odds, often with a smile on their face and a lot of strength in their hearts. They are super heroes, not victims. And while you’re at it remember that our lives may have some extra challenges, but we still face the same difficulties you do. Treat us like parents -– it is what we have in common.
Don’t use the word retard (replace it with ridiculous instead). Don’t ask: What’s “wrong” with a child? Initiate age-appropriate conversations and don’t automatically use baby talk. Use "people-first" language that puts the person before the disability (e.g a child with autism, not an autistic child). It’s not about being politically correct, it’s about the fact that words matter. After all you are reading this, right?
Kindness isn’t sympathy or pity –- it is being a good person. Teach your children the same. It really is that simple.
Follow Kathleen O’Grady on Twitter: www.twitter.com/kathleenogrady