Let me start by saying that this isn’t a sad letter, it is actually the opposite. One of Derek’s co-workers recently invited us to participate with her family in the Autism Speaks 5k Walk in Altamonte Springs. The Autism Speaks organization hosts several 5K walks in Florida each year to help raise funds and to increase the understanding and acceptance of people with autism spectrum disorder.
Derek’s co-worker’s name is Kathy and she has 3 grandchildren that all exhibit traits within the spectrum of autism. Autism Speaks defines autism this way; autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 68 children in the United States. This includes 1 in 42 boys and 1 in 189 girls.
We met Kathy, her two daughters and her grandchildren at Cranes Roost Park. I asked the mothers what their experience has been like to raise children with autism. They told me that the hardest part is getting schools and teachers to accommodate their children’s needs. Each child with autism is different, and they react differently to situations. The 5K event itself used pompoms in the opening ceremony as a sensory neutral way for the audience to cheer without making noise. I never thought clapping could negatively affect a child with autism. This is that kind of information that Autism Speaks is trying to get people to understand.
So, without a gun shot, the walk began just as rain clouds rolled over the area. Even with umbrellas we all got pretty soaked on the first lap around the lake. By the second lap about 90% of the participants had abandoned the walk, but Kathy isn’t the kind of person that lets a little rain stop her or her family. So at different paces we started the 3rd lap in the pouring rain. The kids were having a blast splashing in puddles and running in circles when the youngest grandson suddenly took off running. His oldest sister tried to catch up with him but couldn’t. He disappeared and all of us panicked. What seemed to be an eternity later we heard the commentator announce that they had a lost boy at the main stage. It was him and he was safe.
I was with Kathy when she and her family found her youngest grandson. They were all pretty shook up but his oldest sister, who couldn’t catch up to him, was crying uncontrollably. Kathy held her daughters, and they held their children and they cried together. Autism can deny a person the capacity to control their emotions. So Kathy met the kids where they were, engulfed in the raw experience of loss, fear, and guilt. Even though everything was fine, she didn’t tell them how to feel, she joined them and they cried together as a family.
We have emotions for a reason. I truly believe that I saw this family heal by just letting them out and not reacting the way they should, but by the only way they could. My new understanding of autism has me thinking that the rest of us should give that “letting them out” thing a try. It feels great!
If you would like to get more information about Autism Speaks, check out their web site at autismspeaks.org and if you feel inclined to do so, donations are always welcome.
Happy Holidays – Mark Ramey