Considering Autism Awareness Month is April, I thought it might be useful to have a post to talk about it. Let me take a moment to be frank, Autism is a “popular” topic in Washington DC and a popular cause in Congress. And I say that in not a fully “positive” way. Legislators want to “solve the Autism problem.” As to what should/could be done, there is a lot of contention and even confusion…and not just on the Hill, but amongst the community. Cure vs. Care or Neurodiversity vs. Significant Disability etc etc. The recent New York Times article “Nominee to Disability Council is Lightning Rod for Dispute on Views of Autism” about the appointment of Ari Ne’eman to the National Council on Disability and the subsequent hold on his confirmation illustrates this.
I have had the pleasure to work with Ari on several occassions in the past to lobby for legislation that would help provide supports and services to families with a member who is on the autism spectrum. I have also lobbied for additional funding for reasearch into Autism itself. At the time, I also had the benefit for working for an organization that included professionals who were doing cutting edge behavioral research and psychological interventions, as well as providing mental health supports to families. I had experts who could tell me about what was going on in the field and what practicies worked and what didn’t. And working with the Autistic Self Advocacy Network (ASAN) gave me the perspective from individuals who were on the spectrum themselves. It is much easier to develop policy and legislative solutions when you have the information at your fingertips. Sadly, because of the cause celebre that Autism has become, I am not so sure that all of the policy-makers and their staff have that same understanding. In fact, I’m not sure how much of the general public has an understanding.
So, I’m going to take a moment to offer an explanation of Autism; not the science, not the tear-jerker stories, but an honest appraisal from a blog written by a mother who has a son with Autism, Bud and her discussion with his class at school. It is probably THE clearest description I have ever heard and offers an intimate portrayal that we “grown-ups” should heed.
She opens with Question #1 – What is Autism?
Below is a shortened version of her explanation for just Question #1.
“Let’s think about the brain as a machine. You know that your brain controls everything you do. You use your brain to think about things and to make your body do things. Your brain also controls things that you don’t even think about. You don’t have to remember to breathe, because your brain does it automatically for you. You don’t have to remember to blink, because your brain does it. So, sometimes you USE your brain to do things and sometimes your brain just does things because that’s what it’s wired to do.
“The same thing is true in autism. Bud uses his brain for everything, too. But because there are differences in the way his brain is connected, there are differences in the way his brain reacts to things.
“Now, we all know that your brain is a machine that’s made of tissue and neurons and nerve cells. But let’s pretend it was a more simple machine. Let’s pretend your brain wasn’t made of tissue and neurons and nerve cells, but instead, it was made of metal and plastic and electrical wires. And let’s pretend that when you put that metal and plastic and electrical wire together, it turned into a toaster.”
“And let’s pretend that MOST of us had toaster brains. Some of us might make white toast and some wheat toast or rye toast, and some of us might make light toast and some of us dark toast. Some of us might only toast bagels, and sometimes we might even burn the toast, but for the most part, all of our brains would be able to do the same thing: make toast.
“Because we have brains that are really GOOD at making toast – we will want to have a world where it’s REALLY important and REALLY valuable to make toast. Right?”
Heads nodded around the room.
“Now let’s pretend that Bud’s brain is ALSO made of metal and plastic and electrical wires, just like our brains, except that when HIS metal and plastic and electrical wires get put together, they turn into a totally different kind of machine. Instead of being a TOASTER, Bud’s metal and plastic and electrical wires turn into a HAIR DRYER.”
I swear, I heard gasps.
“Now, there’s nothing WRONG with a hair dryer, right? Hair dryers are great! There are some things that hair dryers are really good for. There are some things that a hair dryer can do even BETTER than a toaster. But it is REALLY, REALLY hard to make toast with a hair dryer.”
They laughed again, and nodded, and totally, completely got it.
“So, in our pretend world, even though Bud has a perfectly wonderful hair dryer brain, it’s going to be hard for him, because we toaster-brained people have decided that the most important thing that people do in our world is make toast. And Bud probably can make toast with his hair dryer, right? But he is going to have to work a lot harder to make toast with his hair-dryer brain than we will with our toaster brains. It will probably take him a lot longer to make his toast. And no matter how hard he works, his hair-dryer toast will probably always look different from our toaster toast.”
The room filled with murmurs of understanding.
The discussion continues throughout March with more questions and answers with an amazing closer on April 2nd. Children always seem to “get it” better than we ever could. Please do go check out the rest of her blog posts.
Question #2 – Why does Bud repeat things from TV? – Or Meanings, Feelings and Wacky Hair
Question #3 – Why does Bud say the same things over and over and over? – Or Sing Out Loud, Sing Out Strong
Question #4 – Why does Bud run in circles? Why does he need movement breaks? – Or Shake Your Sillies Out
Question #5 – Why do noises bother Bud? – Or Thats Not What I Hear
Question #6 – Why does Bud miss his mom so much? Why does he get really attached to people and want to be with them all the time? – Or Konnichiwa
Question #7 – How can I be a better friend to Bud? How can I be a person Bud would like to hang out with? – Or Friendly Talk
Question #8 – Will Bud always be this way? – Or Where Are We Headed?
Question #9 – Does Bud know he’s different? – Or Different Like Me
Question #10 – How can I help? – Or With a Little Help From My Friend