Guest Blogger: Terra Starr Smith, Counselor, Podcaster, Writer, Follower of Joy.
Belong – to go along with.
“You only are free when you realize you belong no place — you belong every place — no place at all. The price is high. The reward is great.” – Maya Angelou
“Does he talk at all?” a little boy asks as he stares down at me from the monkey bars and points to my nine-year-old son spinning around on a piece of playground equipment. It is a question I handle often. Being outside is an immense joy in Finn’s life. We get extra excited when we happen upon a space with adaptive equipment. It is a beautiful day with a clear blue sky, there are just enough people at the playground, and Finn is having a lot of fun watching the other kids play.
I turn my attention to the curious little guy and state, “He cannot talk with his mouth, his name is Finn, you can say hi to him, and he knows what you are saying.” The next question is hard to answer when anyone asks and more complicated when a youngster inquires. “Why can’t he talk?” I explain that Finn has autism, and I take a deep breath. In the warmth of the sun and the laughter of the other kids, I have relaxed and let Finn play without my usual hypervigilant supervision. Now, I am pulled back to reality and the varied truths that my son is autistic, he is different, and he wants to play with friends. He wants to be included and belong.
Photo: Terra Starr Smith and Sara Sell
Playgrounds are, in a way, the first tests of belonging when we are young in school. From the time we enter kindergarten, we hope to hopscotch our way into a group of friends that will help us navigate the elementary schoolyard trial and tribulations. We soon realize that belonging and not belonging means the difference between connection and disconnection, the difference between inclusion and exclusion. “You can’t play with us” conjures for most of us at least one memory of being excluded. We quickly learn how important it is to belong in the place where we spend eight hours a day.
The feeling of not belonging is so powerfully uncomfortable we often investigate the effects of exclusion. A 2011 study noted the substantial overlap between social rejection and physical pain. The authors state, “Activation in these regions (of the brain) was highly diagnostic of physical pain, with positive predictive values up to 88%. These results give new meaning to the idea that rejection “hurts.” They demonstrate that rejection and physical pain are similar not only in that they are both distressing – they share a common somatosensory representation as well.”
When we do not belong, we hurt. When full humanity is not extended to a person, regardless of ability, it hurts. Autistic individuals face significant barriers to belonging, and the many myths of autism fuel these barriers to inclusion. Many believe autistic people do not want social interaction or love, and this is not true. Unfortunately, autistic persons of color and their families face even more substantial barriers to belonging.
Recently, I spoke with Maria Davis-Pierre, the Founder and CEO of Autism in Black Inc. Her organization aims to bring awareness to Autism Spectrum Disorder and reduce the stigma associated with the diagnosis in the black community. She is a licensed therapist, and we talked about the Black parent experience when you are raising a disabled child. “We have stigmas that we have to deal with not only inside our community but outside of our community that cause a lot of barriers. Our experiences are different just because we are Black. When we are talking about support systems, we have to navigate those things differently because we are Black and we have a disabled child.”
She cited studies that discuss how “helping professionals” do not even want to discuss the autism diagnosis with Black mothers because of the stigma that those moms are “just trying to get a check.” She also discussed the school system and how the type of language used on Black children’s Individual Education Plans (IEPs) further stigmatizes them.
Maria shared the experience of her autistic daughter’s IEP paperwork and words used by the teacher to describe how her daughter is “not good at resolving conflict.” Maria explained Black children are wrongly seen as more aggressive than their white peers at very young ages. This wording served to further label her daughter as combative and different and did not address the real issue of her daughter’s anxiety. Amazingly, but not surprisingly, the simple wording on an official school document can mean the difference between inclusion or exclusion for an autistic child.
How do we cultivate a sense of belonging in our autistic loved ones and especially in autistic persons of color? What steps can we take to practice inclusion and acceptance? It starts with extending full humanity to all autistic individuals. We must allow people with autism to show up fully as themselves in all spaces and offer the financial, medical, and mental health and community resources to families who help support autistic individuals. We must do the anti-racism work in our schools, communities, and business places to address critical gaps in those offered resources and continue to build local, state, and national policies that seek to make it easier for those with autism to fully participate in their communities. We need to fully fund public schools and allow teachers and students to have what they need to imagine a truly inclusive setting. And finally, we need to center autistic voices and follow the lead of Black activists and parents like Maria.
The most fundamental human need is to belong. As Dr. Angelou stated “The price is high. The reward is great.”
Support of Autism
Yale Child Study Center, one of our network organizations, provides support for those living with autism in a variety of ways.
One avenue is through their faculty run program SELF (Socialize, Experience, Learn, and Have Fun). SELF fills a gap by providing supports for girls and women on the autism spectrum. “Over the last ten years, ASD interventionists and researchers have begun to appreciate that the development of socialization and communication processes for girls and women is quite different from that of boys and men…The initiative is designed to address these communication and socialization differences through recreational and communal activities. These activities allow our participants to pursue their particular interests and leisure activities in a safe and supportive environment.” The SELF initiative allows for activities and interests to be explored through female peer groups, i.e., horseback riding and swimming. Great support in this area where autism and gender intersect.
For more information about CSC’s current research on autism and neurodevelopment, please visit autism.fm.
Our hearts were full as we read this Washington Post piece about a young man named Ryan Lowry. Ryan is autistic and his recent outreach seeking a job (and the response it received!), speaks to the goodness in this world. No doubt there will be many who take “a chance” on Ryan. He and others living with autism are more than worthy.
Word to the wise. Our differences make us stronger and better. Let’s champion and celebrate the acceptance and inclusion everywhere.