I began to volunteer at the Jason Roberts Challenger League two years ago. On my first day, I vividly remember being very apprehensive about the next hour and a half. You see, while I did have experience working with kids—I had worked at the YMCA the two summers prior—I did not have experience interacting with children with special needs, and it intimidated me.
Autism spectrum disorder, or ASD, is a developmental disability that can significantly impact the social, communicative and behavioral skills of the autistic person. In 2014, the Autism Society conducted a study that shows that about 1% of people around the world, 3.5 million of which live in America, are on this spectrum.
Down syndrome, otherwise known as trisomy 21, is a genetic disorder caused by having a partial or complete extra copy of chromosome 21, resulting in one more chromosome than is usually found in our genetic code. According to a study done in 2008 by the CDC, around 1 in every 1,200 people in the U.S. had Down syndrome.
Both disorders are serious, life-altering disabilities that drastically change the lives of children and their families. Now imagine being told that your child is being diagnosed with DS-ASD: both Down syndrome and autism.
This is the reality of many of the families that sign their kids up for the Jason Roberts Challenger League. The JRCL is a baseball league that services children with special needs, and gives them a place where they have the opportunity to be active, have fun and feel welcomed.
Now I know I’m not alone in this feeling. Often, we look at people with autism and Down syndrome and other disabilities, and we see something that scares us, because they’re us, but not “us.” Sometimes they don’t have some of the core abilities that make humans so unique, like speech. They can put us on edge, just like the depths of the deep blue ocean or the vacuum of space: an irrational fear of something that is so close to us, yet so unknown.
But it shouldn’t be that way.
I know now because I have spent a significant amount of time around people with these special needs, that they are some of the easiest people to interact with on the planet. As an example, this spring one of the kids asked me when my birthday was, and I told him: June 28, 2002. He asked me, “So you’re turning 17?” and I said “Yes, yes I am,” and he wished me a happy birthday as we were about to start the game. An hour later, as the game ends and I’m beginning to walk away from the field, five or six other kids came up to me and wished me a happy birthday, because they were either told it was my birthday or overheard the original conversation. When I said thank you, they all started grinning, and one of them even offered me a hug.
The amount of joy they got out of simply being kind to someone was—and is every time I witness one of these acts of pure kindness—heartwarming. They are caring, funny and kind, and just as deserving of our respect, time and understanding as the rest of humanity. The only problem is, they often require a lot more of these things than an average person.
The position I hold as a volunteer at the JRCL is a special “buddy.” I work with kids that need people to support them. At the JRCL, there are all sorts of levels of special needs. Some of the kids have high-functioning autism or Asperger’s syndrome and do not need to be heavily supported, whereas some of the kids with more severe cases are non-verbal, meaning they cannot speak and instead communicate with sounds and gestures.
Additionally, when describing them as “kids,” I don’t necessarily mean that they are still under the age of eighteen—which many of them are—but many of them aren’t. This year is the league’s 25th year, and a few of the kids have been there for all 25 years. Some of them are well beyond their teen years, but every single person there in a baseball uniform acts like a kid, which is one of the reasons that raising and supporting a child with severe autism or down syndrome it’s a lifelong commitment for parents.
It may be very time-consuming, but that doesn’t mean it’s any less rewarding. In that same Autism Society study, they found that in the U.S., the average lifespan cost to support someone with an intellectual disability is $2.4 million, whereas it’s just under half that for someone without an intellectual disability. This is especially startling when you realize that the average life expectancy for someone with autism is significantly lower than those without an intellectual disability. The British Journal of Psychiatry recently found that in Sweden, the average life expectancy for those with autism sits at around 40-54 years of age depending on the severity of their ASD diagnosis, opposed to the normal 70 years for the general population.
However, not all cases of autism are as severe as the cases of the kids I work with at the JRCL. Autism is a spectrum, meaning that the range of how impacted the person is, varies greatly and many people who are on the spectrum you wouldn’t know they were upon meeting them. I have several friends with Asperger’s syndrome or high-functioning autism, and they are some of my closest friends and some of the brightest people I know.
That being said, what is the main issue? It has to do with the societal view of who is normal, and the stigma that comes with being “different.” There’s no arguing that autism and Down syndrome make those who have them different from most people who don’t, but that isn’t a bad thing. They have things taken from them, but the stuff that was taken away gets redistributed somewhere else. A kid with autism who has poor social skills may be extremely gifted intellectually or have a particular set of skills that serves them well in mathematics, or memorization. For example, one of the things I’ve found out is that all of the kids I’ve worked with have lost their innate sense of bias: they look at a person, and they see a person, without harboring preconceived notions or judgments. No more, no less. If you’re a human, they treat you as such.
Most of us aren’t accustomed to working with this group of people, and so we feel nervous when we encounter them. I know I certainly was before I started working at the JRCL. But I do think the time and effort that goes into getting to know this absolutely incredible group of people is worth it.
It brightens my day every time I go to that baseball diamond because I know that whatever little bit of happiness I bring to their lives, is impacting someone who may not have much else.