Susan Boyle, the middle-aged Scottish singer who stumbled upon fame after competing brilliantly on “Britain’s Got Talent” in 2009, told an interviewer a few days ago that she has been diagnosed with Asperger’s Syndrome, a high-functioning form of autism. Susan is an aspie! I smiled at the thought of another role model for my son. Then I imagined Autism’s First Lady, Temple Grandin, giving Ms. Boyle an awkward call to welcome her to the club, and I smiled more.
It was a Thursday, April 24th, 2008, when a pediatric psychologist handed me a box of tissues and told me my four year old son had autism. I didn’t burst into tears immediately, but the tears started to flow as she put a label on Devlin’s violent tantrums, obsessions, speech and language difficulties, ritualistic and rigid behavior and his tendency to perseverate on certain topics/objects. My first instinct was to shield Dev from any sort of label and not to advise his pre-school teachers of his diagnosis. Then I reconsidered.
Labels are a sticky matter because they can be used for good or evil. On the one hand, labels can serve to further alienate a person or encourage a person to behave consistent with their label. Constantly pointing out that “Johnny is the sensitive one” might have the unintended consequence of leading Johnny to believe he will always be histrionic and then his hysteria develops into a self-fulfilling prophecy. “Devlin is autistic” tends to indicate that this is how I define Devlin as opposed to “My son has autism” which describes one of his attributes.
Labels can also serve a very useful purpose. From a practical standpoint, your child isn’t going to get the public services he or she needs if they don’t have a diagnosis. Educators won’t be able to address problem behaviors as quickly if they don’t understand that a child has a particular diagnosis. Teachers can’t position a child with vision problems at the front of the class if they don’t know the child has difficulty seeing the board. Potential friends may dismiss someone on the spectrum summarily if they are taught that different is bad, but I submit that those a-holes weren’t friend material anyway. If I know someone has a fear of heights, I’m not going to make them stand near the edge. This information allows me to treat them with increased understanding.
Yes, some people will jump to conclusions about the label based on their own prejudices and not investigate any further. But if we aren’t honest, if we don’t put the label out there, the negative pre-conceptions will remain because we are doing nothing to challenge them. You are unlikely to dislodge long-held stereotypes some people hang onto, so I don’t even try. But for most of us, those who have an open mind and an open heart, you have the chance to give that person a basis for understanding your child. Trust me, they already know he’s different. That cat was out of the bag the seventieth time Devlin asked them their address and recited, turn by turn, street by street, how to get to their house from here. If we, as parents, friends and teachers, act like the label isn’t self-limiting, then it isn’t, and it won’t be.
The label is just the first step in understanding Devlin. It gives us a jumping-off point to say that not everything is as it seems. As we talk about differences and special needs, we de-stigmatize them. Where labeling is a disservice to people on the spectrum is to give them a label and then not give them tools to deal with that label. Not putting a label on it makes as much sense as not telling someone of the side effects of a particular medicine because some people are psycho-somatic and will develop those symptoms based on suggestion. You would never deny the majority of folks who aren’t susceptible to suggestion helpful information they could use to monitor their own expectations of how the medicine might affect them. The same holds true for people on the spectrum. Ms. Boyle wasn’t just a weird, sometimes anti-social instant celebrity after all. Though she has been those things, she serves as proof that you are not the sum of your diagnosis.
Susan, you just became a lot more interesting to me. I can’t wait to see what you will do next.