We have many well-meaning friends and family who send us articles — lots and lots of articles — about autism. Because it’s headline grabbing, most of the articles pertain to new theories as to what the root cause of autism is, which range from vaccines (which has been debunked time and time again and is a conversation I will not entertain) to gestational diabetes (didn’t have that) to urinary tract infections (didn’t have that either) to premature birth (Nate was two weeks late) to automotive exhaust (I had to drive to work. I was in the car for 20 minutes a day.). There is a huge giant list of these theories — and they remain just that: theories. These studies publish their preliminary findings, they get splashy headlines, and then they disappear. There’s no pamphlet about “the causes of autism” and pregnant women aren’t warned about these biological and environmental concerns because none of them have been proven with significant, meaningful data. In fact, many have been disproved since the time of publication.
Some of the articles also discuss a “cure” for autism. The conversation about a “cure” really gets my blood boiling. Autism is not an illness, it’s not a disease–it’s a disorder. It can’t be cured with a serum or fish oil or an enema of bleach or a change in diet or anything else. One can “grow out” of the diagnosis as defined by Diagnostic and Statistical Manual (DSM) of Mental Disorders (in fact, some will simply no longer qualify as autistic when the new DSM is released…but that’s a whole other kettle of fish) but, regardless, the truth remains that you are, at some level, autistic — just like you’re male or female, white or black, tall or short.
What causes autism doesn’t matter much to our family–because it’s already here. What is most interesting to us are studies that help us understand autism — help us know what life is like from our wordless boy’s point of view and can allow us to help him become the best person he possibly can be. (Isn’t that every parent’s goal?) Two really great studies came out recently that made us very excited and I thought I’d share them with you here.
The first one I heard yesterday on NPR. (We listen so often that I feel compelled to get Nate a “I Heard it On NPR” t-shirt….) Nate and I were running errands and All Things Considered came on the radio. One of the lead stories was about a Stanford University study that studied the “pleasure circuits” in the brains of autistic and neurotypical kids. Using 20 autistic children and 19 neurotypical kids, researchers used an MRI to compare their response to the human voice. The story said, “In typical kids there was a strong connection between areas that respond to the human voice and areas that release the feel-good chemical dopamine.” But this connection was reduced in children with autism. Since dopamine makes us feel good and happy, speech and response to language is biologically and neurologically provided to neurotypical kids. For autistic kids, there’s a significantly lessened physical reward for either action, which fully supports the ABA therapy that provides that extrinsic motivation for the child whether it’s a piece of a cookie or the reward of using a favorite toy. (Nate? He will work for a kernel of popcorn.)
The second article I saw over on the Facebook page of The Ryan Files, a blog that follows the adventures of Ryan, who has PPD-NOS, which is on the autism spectrum. It was published in the U.K.’s Daily Mail and summarized the findings of a post-doctorate fellow at Child Study Center at Yale University (which is where the Yale Autism Program is housed, one of the foremost autism study centers in the country) and her colleagues at Vanderbilt University. They asked 20 kids with autism and 26 neurotypical kids, all between the ages of 8 to 17, to watch brief video clips of moving black and white bars and asked the kids to identify which direction the bars were moving, left or right. As correct answers were given, the length of the video clip was shortened; this allowed researchers to measure how quickly each child perceived motion. Guess what, folks? They concluded that children with autism see twice as quickly as their neurotypical peers. My favorite quote? “In fact, the worst performing participant with autism was roughly equal to the average of the participants without autism.”
So why do these study findings matter to me? Because they start piecing together what Nate’s daily life is like. These are all things we’ve suspected but now they’re being verified. Since a very young age, Nate has seen and paid attention to an incredible amount of detail ranging from counting dust particles in the air to finding random patterns in brick grout to quickly finding the tiniest images of clocks or the numbers 2 and 5 as we stroll in store aisles. Nate sees everything and a big part of his daily therapy is helping him learn how to focus on a select part of that everything. For instance, if there’s a lot of commotion going on when he’s unpacking his backpack at the start of the day, his therapists put their hands on the sides of Nate’s eyes to create blinders to block out the extra activity, and restate the task. This “resets” Nate’s focus and lets him get on his way. Without it, he sees me, the clock, his friends, his teachers, the cracks in the floor, etc., and Nate completely loses focus. As for the hearing, it’s something we continue to struggle with. Nate’s four and he still does not respond to his name, which is no longer just an inconvenience but has become a significant safety issue when he gets loose and runs in a parking lot or other public areas. In fact, it’s widely believed (and described by individuals with autism who can speak) that Nate hears every sound — the traffic outside, the bird calling, my fingers on the keyboard, his breathing — at an equal level, unable to tune into one and tone down the others. Getting a window into the neurological reasons as to why this happens helps — and so does the reassurance that ABA therapy is the right way to go. (For our family, it is the only way to go.)
Though Nate’s nonverbal, he’s made some dents into communicating. He can request things he wants through sign language, pointing, and his iPad. But he can’t answer questions such as “What’s it like to see?” or “Did you hear me call your name?” So studies like these help us see the world through Nate’s eyes and allow us to reflect on what ways we can change course to help him in every day life. And now, Nate has been accepted into an autism study at the Autism Study Center at Yale. The only hurdle? Nate has to complete both an EEG and a MRI. We are most concerned about his reaction to the MRI though Yale has very smartly created both written social stories and a video social story about the experience. We will be scheduling our mock MRI and EEG shortly; if Nate does okay with that, then we will advance to the real version. If he completes that, then we’re in the study. I’ll write more about it later but, for now, we’re just hopeful that we can contribute to the amazing research going on every day about how to best help individuals with autism.