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?
11 thoughts on “What is Autism Awareness?”
Reblogged this on Retirement – My New Reality.
Even today, the guidance counselor and principal of our school have a very narrow opinion of what autism is and how it manifests. Each case is so different, I think we can be aware but not understand. And that’s what we really need, Autism Understanding Month. I’ve read much of the medical literature. The place where I’ve gained most of my understanding it through first person blogs of individual and parents of kids on the spectrum.
Really, at this point in time, Autism Understanding Month seems to make so much more sense.You’re right, the dry medical and even educational stuff is not very helpful, but that was all that I could find in the nineties. I was so excited when I discovered memoirs and autobiographies about people with autism. And now, blogs. But Jeff, don’t forget to read the stories in my book some day. 😉
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Yes, you’re right. I’ve just sent your book name to my work email. I’ll look for a copy tomorrow.
Lol. Just joking really, but it does have stories like blogs do. I am going to start a mission soon to ask people to request it at their libraries. Oddly, it is not in my own library. They have an odd policy. It is in a neighboring library system. If you can’t find it at your library you might know who to ask to request it. It is available on Ingram Spark, which is where many libraries order their books.
We get all of our books from Ingram. I get nervous requesting books and usually just shoot for a library loan. In this case I’ll make the recommendation that we buy it.
I’ve been thinking about this a lot. As the weather changes and soon, daylight savings will cause the sun to be out later – the kids play on the street a lot more. And it causes me such DREAD. No matter how much autism awareness on gives, two kids on the street are just mean to Declan. They expect a kid to be a kid and have little compassion or understanding to differences. I like your list. The kids are not open minded and that really is a requirement for autism awareness. And I agree with Jeff. Our school is the same – there is a very narrow definition of what autism is. I’ve had one school psychologist say she didn’t think Catelyn was autistic, even though she was already diagnosed, she felt Catelyn was just depressed. Another said she wasn’t sure if she “saw” the autism in Declan, which blew my mind. Both times, though, I felt they were operating on a very strict narrow path when it came to autism – clearly not fully aware.
Oh my gosh. How frustrating to have the school react that way! The changing criteria for diagnosis probably contributes to the confusion and lack of understanding but… not good. Sometimes I have a hard time remembering which stories made it into my book so you may have read this, but one young adult told me about the depression which was a struggle for him in middle school. His depression was overlooked because all people saw in him was the autism. There definitely needs to be more awareness about the fact that both autism and depression can exist together in the same person, in addition to other things.
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I never heard of autism until the mid-1990’s either. When I was a little guy it was all lumped together under “retarded”. If you weren’t bad enough to be retarded then it was all a moral shortcoming. You obviously didn’t want to be social, you were lazy in class, and your clumsiness would disappear if only you’d practice.
High functioning autism or Asperger’s didn’t even enter my head until my late 50s. But when I saw the diagnostic criteria it was like reading the definition of my life.
You are not the only adult I have heard this from. One woman diagnosed in later life told me she’s rather be autistic than stupid any day. She grew up thinking she was stupid. What a challenge is must have been to you and such a relief to at last know a reason. Although, just knowing the name for your struggles doesn’t make them go away.
With World Autism Day around the corner this is so timely! Awareness alone means little without action toward understanding, acceptance and inclusion.
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