Where are we as a society today when it comes to autism awareness? What does the term mean or, more importantly, what does someone who is “aware” of autism do differently than someone who is not? These are questions I sometimes ask myself.
Parents of children with autism have told me that their child does not look different than other kids, so they are judged. We can see wheelchairs, white canes, and hearing aids that make it clear to an observant person that someone has a special need.
For the most part, we can’t see some tangible, concrete indicator that a person is on the spectrum.
I was raised in a time and place where everyone around me was what people then would have called “normal.” I remember that during the course of my nine years in elementary school, I met a friend’s acquaintance who was deaf. There must have been a bus stop for special school near where I crossed the road to get to my elementary school because I vaguely remember meeting and occasionally saying a hello to a girl about my age who was “different” than me.
It seems to me now that in the nineteen-fifties and sixties some other family in my subdivision must have had a child with a disability! If so, I never saw or knew of them.
In college, I majored in elementary education and minored in special ed. In those days, special ed degrees were not cross categorical like they are now. I won’t even tell you what words, now politically incorrect, were on my first certifications that proclaimed my authority to teach children who had learning or physical challenges.
Autism was not something I learned about in the early seventies before graduating from college with a special education degree.
Actually, I never heard of autism until the mid-1990’s. I was teaching in a general education kindergarten at the time I met my first student with autism. He was probably the first student with that diagnosis to attend our school, I believe. By the end of that school year I was frustrated because I did not know “best practice” for reaching and teaching that child.
I began learning about autism.
Did I have “autism awareness” by the end of that year. NO, I did not. I had merely heard the word autism and met one child on the spectrum. I had read some dry literature.
So, what is autism awareness?
When do you “get there?” More importantly, what do you do when you have arrived?
Am I at the end of my awareness journey?
Here are some of the steps that I feel have helped me on my path.
- 1. Education
- 2. Mindfulness
- Stepping out of my comfort zone
1. Education – When I met that first child, I began reading and researching. Materials were scant in those days. Now we have access to books, videos, television documentaries and the internet to help us learn just a little more. As a caring adult, I believe it is up to me to continue to educate myself about autism.
2. Mindfulness – I must admit that when I began my journey to learn more about autism, it was all “book learning.” I did not yet understand how those “diagnostic traits” could look different in every child.
Nor did I recognize meltdowns as something other than just plain bad behavior. I didn’t understand that this behavior did not reflect belligerence, but was an attempt to survive in an overwhelming world. I need to be mindful that when I see children and adults struggle in public, I should not judge. I do not know their story.
3. Open mindedness – follows from mindfulness or maybe works with it. It is really about looking at family interactions. As I listened to people tell their stories, I observed their lives through a different lens – one that did not focus on judgement but on understanding. As long as I judged, I would not become aware.
4. Stepping out of my comfort zone – In the twenty years after I met that first child on the spectrum, many more autistic children came through the doors of my school. I also found other opportunities to increase my awareness. I became involved with children with autism through religious education classes at my church. My lens expanded during those years. I felt like I had made it. I had achieved this illusive thing called autism awareness!
5. With all my hard-earned knowledge I felt called to take action of some kind. I began with my conversations with families of children with autism. I believed that I could help families share their stories so other parents would know they are not alone. My own knowledge and awareness would help me provide a backdrop for parent stories. Parents were surprisingly willing and eager to tell others about their experiences. They, too, believed that this book would help support other parents.
In listening to these stories, I understood that my autism awareness still had a long way to go!!!
I realized that I am still lacking in awareness of what families of a child with autism experience.
It was a shock to realize that parents have to continually advocate for their child for financial support, educational programming that is the best for their child, medical support that causes less problems than it cures. And so much more.
So that takes me back to the beginning of this post. What does autism awareness mean and what does someone who is “aware” do? (I am talking about people who are not parents of a child on the spectrum.)
Maybe it is not so complicated. Maybe each person needs to educate themselves just a little, be mindful of those around them who experience autism in some way in their lives, look at people around them with an open, non-judgmental lens, and step out of their comfort zone to be kind and to act in some small way to help.
What do you think autism awareness means? What does it involve?