Why We Need to Think Differently About Autism

Number 1 on our list about What Is Autism? is "Different Sensory Experiences," namely:

For example, heightened sensitivity to light, difficulty interpreting internal physical sensations, hearing loud sounds as soft and soft sounds as loud, or synesthesia.

"Qualitative impairment in social interaction" is the first item mentioned on the DSM IV-TR diagnostic criteria, with "marked impairment" in "eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction" specifically mentioned. If you (perhaps a parent whose child is said to be presenting with symptoms of autism) are reading the DSM criteria for the first time, it's the notion of "social impairment"---of something lacking in social interactions with others---that is first listed. But I'm not sure that it's the best place to start thinking about what autism is.

Indeed, when Charlie was just diagnosed, my husband Jim and I thought that he didn't have any sensory issues. Nine years later and these have become much more apparent; he's become very sensitive to sound and touch, in particular. And "difficulty interpreting internal physical sensations"---this seems to provide a sort of explanation for when Charlie does something "out of the blue." Sudden cries, sudden distress in his head---I know there's always a reason for these occurring and I've come to think that it's that Charlie feels and senses something, and this something feels wrong, and the way he communicates it is through his voice or head or body.

And thinking about what he does some things as happening due to sensory distress----to over-stimulation----helps me to grasp at understanding why, last night, one moment Charlie was curled up in a blanket with his CDs and DVDs arrayed around him (just as he has had them for months) and the next moment, fear and distress and Charlie knocking everything away, away, away, and us running to him, totally beside himself.

I know there's more than a little disagreement about talking about autism as "disability" and "difference" instead of "disease" and "disorder," as noted on our list of autism controversies. The reason I talk about autism as the former, as "disability" and "difference," is because those terms help me to understand why Charlie got so upset last night. The CDs and DVDs spread out all over were too much and he was overstimulated and, as some of the CDs and DVDs are about things that Charlie liked in the past (Barney) and no longer has, did memories of losing them and sad, sad feeling creep in? He wasn't "being bad"; he was scared and flailing and it's not easy to hang onto him, now at 11 1/2 years old. 

In the UK, the National Autistic Society has been running a campaign called Think Differently About Autism. It wasn't easy when Charlie got so upset last night, but thinking differently about why he did gives us a better sense of how to help him, and how to help him communicate what he was experiencing before it's too late. And if there's one thing we won't stop doing, that is it.

Image from pjentoft.com