When Sam was young and first diagnosed, I wanted so badly for her to have Asperger Syndrome. I remember that when she was in preschool I asked the district’s autism itinerant if he thought she might have Asperger’s. Please, please say yes! “No, I don’t see that at all. She has autism,” he said in a somewhat surprised voice. It took days for me to pick myself up from that one.
Of course Asperger Syndrome has been eliminated from the DSM-V. Researchers claim that life outcomes, by a variety of depressing measures including employment, independent living, and social connectedness, are comparable for those diagnosed with Asperger’s and high-functioning autism. By high school the two groups are largely indistinguishable. The original diagnosis from early childhood offers far less predictive power regarding a person’s ability to navigate anxiety and find a level of contentment than we used to think. Some people now say that acquisition of life skills is more determinative; some believe it is one’s facility with “perspective-taking.” Both sets of skills can be just as underdeveloped in a child diagnosed with Asperger’s as in a child diagnosed with classic autism. Still, in the hierarchy of diagnoses, Asperger Syndrome always wins the popularity contest.
After coordinating a support group for ten years, I’ve noticed a pattern in the way parents new to the group describe their children. During the early part of the diagnostic process, which I’ve seen take place for children as young as three and as old as ten, the parent explains that something is off. It might be a slight learning disability, or it may be that the child has a mild form of ADD (always mild). Then the doctors are wondering if the child has ADD, but they are also considering Asperger’s (always Asperger’s, never autism). If the diagnosis finally ends with Asperger’s, the parent usually describes the child as having “ADD, and possibly some characteristics of Asperger’s.” If the doctors say the child is on the autism spectrum, the most common explanation I hear is that the child has some autistic traits, but no one is really sure what is going on.
A surprising number of parents ask me for an off-the-cuff diagnosis of their child. Do I think the diagnosis the doctors offered is accurate? The child is able to . . . (fill in the blank), and that ability is inconsistent with the diagnosis. Right? In other words, my off-the-cuff diagnosis should confirm the parent’s opinion that the doctor did not really get to know the child and. is. wrong.
With no relevant expertise I have no business, on an ethical level, even profering an opinion. So I do not. What I do offer, though, is some advice that I hope amounts to wisdom: the label matters in terms of obtaining an IEP; the label matters for a physician who is choosing among possible medications (although with regard to the medication most families learn, to their dismay, that finding the right drug(s) involves much trial and error). The label does not matter for much else. Your child needs whatever support your child needs. If your child needs the space to get up and walk around the classroom, what difference does it make if that need arises from ADHD or ASD? If your child has retreated so deeply into video games that he’s not sleeping enough, does it matter if his diagnosis is AS or ASD? If your child cannot organize herself to get out the door in the morning and complete assignments at school, does an EFD diagnosis (executive functioning disorder) require different interventions than an AS diagnosis?
As I’ve been thinking about this three-part blog post, I can’t decide if I’m conflating two experiences: the “at least my child is not as bad-off as yours” instinct, and the “please make my child quirky but OK” plea. Sometimes the answer is, for me, an obvious yes. Apples and oranges. They do not belong together. But sometimes the two hierarchy/lowerarchies seem deeply intertwined. We cling to the hierarchical thinking because we convince ourselves of the predictive power it has, the power to push our children closer to “normal” in adulthood. Nonverbal learning disorder is better than ADD. ADD is better than ADHD. ADHD is better than Asperger syndrome. Asperger’s is better than lots of things: cognitive impairment, bipolar disorder, and most classic autism. Most classic autism is better than most schizophrenia (at least in my personal version of the hierarchy). As I said several weeks ago, a disability like deafness doesn’t even register for many of us.
I’m not suggesting that we eliminate this transitive ordering from our brains. To do so seems inconsistent with being human. But in addition to limiting our ability to empathize with others, I worry about the hierarchy within diagnoses becoming a self-fulfilling predictor. Regardless of the label, we need to capitalize on our children’s strengths and scaffold their growth where they need it. Sam never “achieved” an Asperger’s diagnosis and of course never will; the DSM and her developmental history preclude it. She’s accomplished an awful lot, though, that some teenagers with ADD, some teenagers with Asperger’s, and some kids with anxiety disorders don’t’ manage. She also has not flourished in ways that some of these other teenagers have. The point is that the label, absent the unique person receiving the label, does not predict the future. The label can help us to interpret some of our child’s behavior and to understand some of his or her experience. That’s it. To put this in complete jargon-speak, the “key take away” of this post is that we parents need to abandon a certain rigidity in our thinking, stop being stuck on the labels, and maintain flexibility in our interactions and expectations.
And here ends the hierarchy/lowerarchy. Next week: celebrating creativity.