In the latest article by Temple Grandin in Autism Asperger Digest, one of the most famous autistic people in the world implored us: “Do Not Get Trapped By Labels.” When someone with the renown of Dr. Grandin speaks, the autism world perks up its ears and listens.
Dr. Grandin makes a valuable point with her words. The definition of autism has changed radically over time; it becomes broader with each rewriting of the Diagnostic and Statistical Manual, which is the manual in which the American Psychiatric Association sets forth the diagnostic criteria for psychiatric (and some neurological) conditions. The article goes on to say that autism is a huge spectrum that lumps quirky computer engineers in with people who are severely disabled. And today, we are diagnosing more children than ever with autism spectrum disorders; in fact, as Dr. Grandin rightly points out, many children on the “mild end of the autism spectrum” overlap almost to the point of becoming indistinguishable from their gifted and talented peers.
When the same type of students get put in different silos, they often go down different paths. My observations at conferences indicate that about half the children who are brought to an autism conference are gifted in at least one area such as math, reading, or art. In later chapters, I will discuss the need for developing their strengths. When I attend a gifted education conference, I see the same little geeky kids going down a different, very positive path toward a career in science or art. I want to make it very clear: geek, nerd, and mild ASD are the same thing. There is a point where being socially awkward is just part of normal human variation.
The issue I take is that “geek” and autism are not the same thing at all. Autism is far more than social awkwardness; it involves struggles with engaging with other people, effective communication, and sensory issues that affect daily life. It is entirely possible to be a geek without being totally disabled in society, and it is entirely possible to be autistic without being geeky. I’m a lot of things and I have a lot of interests and abilities and weaknesses. I’ve got a lot of adjectives covered; if you want bubbly or excitable or intense or even total know-it-all, then I am your girl… but I can’t say that I would use (nor has anyone else used in reference to me) the word “geeky” as a descriptor. And, in fact, when people first meet me, “autism” is not what comes to mind either. But spend more than a few hours with me, and you will notice differences… you’ll notice my frustration when I cannot communicate as I want to, my social awkwardness (and sometimes outright, though unintentional, rudeness), and my inability to function in chaotic sensory environments. You’ll also notice that my strengths are incredible (writing, academic research, factual memory)… and my deficits are almost shocking. In fact, when people discover some of the things that challenge for me (things like crossing the street or cutting my food), they often think I’m trying to be funny or dramatic. When we continue to present autism as “just a little geekiness,” we promulgate this idea that someone like me should not have actual challenges in this world, and that when I do, it’s due to a lack of trying hard enough.
Dr. Grandin says that these “geek/nerd/mild ASD” kids would do better if we focused on their gifts and talents and paid less attention to their autistic tendencies. The kids we put in the gifted and talented silo go on to be apprenticed to their fathers’ physics labs and publish scientific papers before the age of 20; the kids placed into the autism silo grow up with such a focus on their autistic traits that they never have the chance to excel and learn to identify themselves as autistic over and above their abilities.
When I was a child, there was constant focus on my intelligence and ability with words. This will read as a paragraph-long brag session, but bear with me, because the point is in the way the adults in my life focused on my strengths to the total exclusion of identifying and working on my weaknesses. I was identified as gifted, tested, and placed into a special program in first grade, earlier than any student in my district had been identified before. That year, I was pulled out and taught from the fifth-grade reading curriculum. My verbal IQ was over 140 (tests stop at 150), and my state test scores were all above the 90th percentile, every subtest, every year. I earned college credits starting in 10th grade and combined my junior and senior years into one, so that I could graduate a year early. I had a 3.9 GPA at an elite private college by my senior year.
Aren’t I special? I was something else alright. The adults in my life had done such a good job of painting a picture of this intelligent child that I identified myself with a single word: I was smart. I had no idea that I even had any other traits, certainly none worth mentioning. I didn’t know that I was creative, or passionate, or loyal. I couldn’t even relate being “smart” to any real-world value. “You should be a doctor,” they said. So, “I will be a doctor!” I said. Why? Because I was smart, and that’s what smart people did. Even the most desirable traits become faulty when we define ourselves by them and render ourselves to one single facet.
What about the dark side, though? My struggles were totally ignored because, hey, I was SMART! I had SKILLS! Who cares about the fact that I was terrified of professors after inadvertently disrespecting several and setting off explosions of frustration at my inability to communicate with authority figures? Who cares about the fact that, by my senior year in college, I had no friends… none from high school, and none in college? Who cared about my regular meltdowns, not to mention total shut downs in which it was as if someone flipped an off switch? With regularity, I would lose my ability to speak and could not leave my dorm room. I had debilitating sensory issues and missed many classes throughout my academic career when I simply could not socialize or put up with the sensory environment of the classroom. I couldn’t write a check, couldn’t do my own laundry, couldn’t safely cross the street or cut the food on my plate… but, remember… smart, and, skills!
I don’t deny that we focus too heavily on what our kids cannot do and not nearly enough on what they can do, but take Dr. Grandin’s words with a great big heeding that balance is crucial. It does our kids no more good to focus on their skills and ignore their deficits. I was the epitome of was Dr. Grandin suggests in not being trapped by labels; I had no label until I was 21. I was the extreme of ignoring deficits and focusing on strengths, and clearly, this model breaks apart every time the person at its center breaks apart when her very real needs are ignored.
My other question about Dr. Grandin’s words is just why it is a bad thing for a child to self-identify as autistic. If we insinuate that it’s wrong to identify himself as such, then the implication is that autistic is bad. “We don’t want you to think of yourself as autistic!”
I dream of and work toward a world where autistic denotes many things, not the least of which is a community of people in which individuality is prized over mindless conformity.
From experience, the autistic community is one in which I can be myself, strengths and deficits and quirks all told. And, it is one in which I matter… not some highly-touted, academically brilliant version of me, but the me who cannot contain her excitement over cats, loves her friends fiercely, gets overstimulated very easily, has awesome creativity, and communicates far better through typing than with her voice. Those are the traits that the “Smart! Skills! Abilities!” years of my life totally ignored, and those are the skills which I have learned are the real of me… not the set of my skills that merit applause and attention, but the totality of me as a person.
It’s the me that the autistic community embraces and encourages. A whole-person perspective… and perhaps that is what I recommend when we work with “our kids.” We need to develop their skills and their identities as whole people. Part of that includes recognizing their strengths, and part of it involves noting their weaknesses (but never equating “weaknesses” with “autism”). There is so much more in between and above and around strengths and weaknesses… interests, preferences, joys, frustrations, expressions, and, yes, neurology.
We’ll be here to welcome them, the whole of them, to join us in changing the world.