I attended last month's phenomenal International Meeting for Autism Research (IMFAR) conference with no little trepidation -- just thinking about conferences' social expectations makes me panic. I don't mind the actual sessions and keynotes; those are structured and predictable (and I actually enjoy speaking -- in fact I'll be speaking at my third BlogHer conference in August). It's conferences' socially "dynamic" non-session time that freaks me the hell out and makes me cling to my friends like a barnacle. Yet I had a fabulous time at IMFAR, hanging out with a group of acquaintances and instant friends who were all members of, or deeply invested in, the autism community. So when I came home, I had to wonder -- if I'm usually such a social maladroit, yet am at ease in an autism environment, what does that say about me?
I do have a kid with autism. And I'm not the first person to observe that parents of children with autism often have more than a few quirks themselves -- in fact that was the crux of this week's Childhood Autism Spikes in Geek Headlands NewScientist article, as well as fellow IMFAR attendee Steve Silbeman's 2001 Geek Syndrome article (Steve was so taken by "autism, the variety of human cognitive styles, and the rise of the neurodiversity movement" that he's revising and expanding his article into a book). Being an autism parent has always been a convenient way to laugh off my social ineptitude. But what if I'm more than just quirky? I came home from IMFAR determined to explore the matter.
The first thing I did was take the AQ (Autism Quotient) test. I was careful not to exaggerate my responses, taking the milder options when unsure. I still scored 32, above the test's threshold. What does this mean?
Psychologist Simon Baron-Cohen and his colleagues at Cambridge's Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger's report no difficulty functioning in their everyday lives.
I consider my score reasonable for a autism parent, as my day-to-day functionality seems unimpaired to me. Others have welcomed their above-the-threshold AQ scores with more than a "fair enough;" Dawn Ellis's response was relief and elation:
I do not feel disabled. In fact, I feel liberated, like I have more information with which to make better decisions in the future. I am free from having to reconcile what I see with what I’m told, I now have permission to trust myself.
The AQ is not the only way to test oneself for autism tendencies. Like Laura from Life in the House That Asperger's Built, I also took the BAP, or Broad Autism Phenotype test. My result:
You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don't like changes, especially unexpected ones.
We already know social skills are not my strong point, and friends and family can confirm that I throw a hissy fit when my carefully plotted routines are disrupted. Does this mean I think I have autism? Well, no. As Kev at Left Brain Right Brain wrote,
…There is a difference between having enough of the symptoms to qualify for a diagnosis of autism and not having enough of the symptoms of autism to qualify for a diagnosis of autism. In one scenario a person has autism as medically defined. In the other scenario, they don’t.
I doubt that a clinician's findings would vary all that greatly from my self-administered AQ and BAP results. What I do feel -- and I didn't need test results to confirm my feelings -- is that I'm a bonafide member of the autism community. And there's a reason my son and I are so firmly united in our opinion that anything different is BAD -- we're related; we share not just blood but traits.
Honestly, I think we're all on the autism spectrum, just as we are all on the sexuality and so many other spectrums. Most likely, I fall into the category John Elder Robison describes in his new book Be Different as proto-Aspergian: "People with plenty of Asperger quirks but not too many disabilities … lots of engineers, scientists, geeks [hi!], and common nerds are in this category." This is comforting information to keep in my pocket, and helps explain why my IMFAR social experience was a delight -- I was among people whose social needs mirrored my own.
Knowing my autism test scores doesn't explain everything about me -- like how I ended up spawning a six-year-old social bottle rocket, or why I've glommed onto incredibly outgoing partners in both my personal and professional lives. But the knowledge has helped me understand that my social anxiety isn't a character failing, nor is it likely to get any better without support (as a kindly nurse practitioner told me five days ago, after a two-week-long debilitating panic attack). But like Dawn Ellis, I now have more information, and can make better decisions in the future.
Have you taken your AQ and BAP tests yet? Where are you on the autism spectrum?
There really is a reason Shannon Des Roches Rosa communicates so much more fluidly through social media than she does in person, and why she's always slightly flummoxed about responding to comments on ThinkingAutismGuide.com, BlogHer.com, and Squidalicious.com.
More from parenting