Very Different...Just Like the Rest of Us

A number of years ago, I was frustrated about Darrin Khan’s school experience more than normal. With each passing year he grew more distant from his peers and he started pleading nearly every morning, “No school? No school?” In some ways it would be easier if there were teachers or other students or the school to blame, but the students were nice to him, his teachers liked him, and his school was very good. The bottom line is he didn’t feel like he fit in. But why would we expect a kid with autism who doesn’t talk much, and was 2-3 years behind his classmates to feel like he fit in? 

The system is designed to keep him in mainstream classes with his same-aged peers, which meant he was understanding less and less of what was being taught. He was given additional time to work on his weaknesses, and often that was at the expense of his strengths which is not fun for anyone. The way he coped with anxiety was often misunderstood, so the coping was often addressed as a behavior issue, and his anxiety grew. He was doing amazing things at home when he was given the freedom to explore his interests, but he was bored out of his mind at school and grew to hate it. 

I was out of ideas on how to fix the situation and would often wonder about the message we were sending him. At the height of my frustration I decided to write down exactly what I thought that message was. This was the result.

I’m sorry kiddo, but you just don’t fit, there are metrics and standards that teachers must hit, hypocrites, I admit, and your grit is legit, isn’t fair, not a bit Kiddo, you just don’t fit.

You get points for courage, being different is rough, you give them your best, and it has to be tough, for you to believe, that you’ve got the right stuff, when you’re told every day, your best isn’t enough.

They wish they could teach you, but you just don’t fit, you are too far behind, so just quietly sit, they don’t expect much, so that’s what they’ll get, it isn’t your fault buddy; you just don’t fit.

I share that story because it influenced my dissertation research and the findings offer some important lessons for all of us. I found an awesome youth sports program in Maryland (Sports Plus) for kids and young adults with autism spectrum disorder, that seemed to be doing everything right. The program started in 2005 because some parents had a child with autism who wanted to play sports and no programs existed. The data shows that most programs for kids with autism fail, so few exist. The founders weren’t trained in special education or ABA therapy and they had only one philosophy; do what it takes so the program works for each child. It’s their mission to figure it out and more than 95% of first-time participants return for additional programs. 

I wanted to understand how this program was succeeding where so many others have failed, so I interviewed the parents of 14 kids with autism who participated in the program. Three themes emerged that are applicable to all kids – especially the ones who just don’t fit. 

1. Meet them where they are. This theme is all about acceptance. Being different is the norm with this group, so it doesn’t matter how odd a kid is or what challenges he or she brings with them when they show up, they are accepted. The reason the program can accommodate a group of diverse outliers is because they have an individualized approach to both instruction and intervention. Each child challenged based on “where they are” and there are no comparisons to where the group is or where they “should” be. The coaches and volunteers also keep track of the triggers for each participant and the intervention strategies that have worked in the past. These are reviewed prior to each practice.

2. Let them be themselves. When kids are actually being themselves in a group setting, it means they are comfortable in the environment and they likely feel a sense of belonging. It’s a sign that anxiety is under control, defenses are down, and they are willing to be vulnerable about revealing their oddities. There is no judgement in this group and no price to pay for being different. If someone is struggling with something that day and has a meltdown, they are simply brought aside and allowed to calm down in whatever manner works best for them. Importantly, it does not become a spectacle that derails the program because there is an understanding that meltdowns will happen from time to time and embarrassment only increases the child’s anxiety.

3. Never give up. This theme is about the progress being made in the program and the potential for the kids in the future. We tend to think of most disabilities as fixed, but autism is a brain disorder and the brain is not fixed. Neuroplasticity and neurogenesis allow our brains to continue to develop throughout our lifetimes. This program doesn’t think in terms of what a child can’t do; they think only of what a child hasn’t done, yet. The kids and coaches know when an effort is being made, so effort and progress are recognized. That is important for motivation and it is an expectation of the program. They make sure that the kids experience winning and losing and participation without effort is not celebrated. The participants understand that they are competing against themselves and striving for personal bests at their own pace. Personal bests increase confidence and motivate kids to strive for more. Most kids on the spectrum will reach the destination they are pursuing eventually (whatever destination that may be). Some will arrive on a bullet train, but most will take the scenic route and that needs to be OK. For example, a number of kids in the Sports Plus swimming program over the years have made so much slow and steady progress that they eventually qualified for their high school swim teams. That would have never happened in a mainstream youth swimming program. 

This research was on kids with autism, but there are many lessons beyond those kids. I think we all want to be accepted for who we are, be comfortable being ourselves, and pursue life at our own pace. Maybe the most remarkable thing about this research is that the findings are remarkable at all.

Darrin Steele is a father, VP of Sport for the International Bobsleigh & Skeleton Federation, and holds a PhD in Educational Leadership, Research and Policy.