A couple of years before my oldest child was born, the DSM, the Diagnostic and Statistical Manual of Mental Disorders created by the American Psychiatry Association (and used by insurance companies and school systems to mete out services), officially re-evaluated its autism diagnosis, further slicing it into "high" and "low-functioning" subsets.
"High-functioning" children with average to profoundly gifted IQs who used language with relative ease but had difficulties with social interaction and coordination would now be given an Asperger's Syndrome diagnosis. "Low-functioning" children with significant neuro-cognitive delay and difficulties with using and acquiring language would continue to receive an "autistic" diagnosis. Children who didn't fit neatly into either of these two camps would be given a "waste basket diagnosis" of Pervasive Developmental Disorder-No Other Symptoms (PDD-NOS).
This last diagnosis was continually criticized because it encompassed such a large range of abilities, deficits, and possible outcomes that it provided little therapeutic guidance on its own. In an effort to give the PDD-NOS diagnosis more value, additional research categories sprang up just as we were looking for answers about our child, and so, instead of receiving an accepted, understood diagnosis, three neurologists (and thousands of dollars we didn't have) into our search we were told that our oldest son had Multiple Complex Developmental Disorder, a little-known research category that acknowledged our son's ADHD, nonverbal learning disorder, anxiety, sleep disorder, tic disorder, auditory processing disorder, learning disabilities, sensory integration disorder, and severe gross and fine motor delays, but was not used for billing by insurance, was not understood by my school district, and because of an association with psychosis and schizophrenia (that we have never seen evidence of in our son), proved deeply stigmatizing when communicating with teachers.
Putting a name to an atypically-developing child can establish reasonable expectations and identify best therapeutic interventions. Giving a name to my son's set of strengths and deficits should have made life better, should have helped us access services, as well as a community of support. But it didn't. In some ways, the diagnosis we received made things worse. Instead of "autism," my son's IEP category has always been "OHI," or "other health impaired." This has resulted in longer waits and harder fights with our school district to provide necessary services and therapies – a recurring, increasingly-antagonistic cycle every time we felt his IEP needed refining.
As an example: despite repeated requests, our school district balked for a year on even evaluating my child for occupational therapy. That year was characterized by failure and toxic home-teacher communication where my child was labelled "oppositional" and "lazy" and I was labelled "crazy, over-indulgent, and Munchausen's-by-Proxy" by his teacher. When he was finally evaluated the following year as an 8-year-old student for gross and fine motor issues, my older son was found to be functioning on an 18-24-month-old level.
Services ensued but somehow as his advocate I remained suspect. My son's 4th grade teacher once informed me, "I've heard about you and I'm writing down everything you say to me." Even more distressing, our odd "reputation" bled over into my ability to advocate for my younger son as he, too, entered school. This bizarre, unprofessional treatment finally culminated in a team meeting where the school principal demanded to speak to my younger son's immunologist before okaying the health accommodations on his IEP. Despite the paperwork and doctor's notes in his file, it turned out she did not believe that he had an autoimmune disorder. Even after all of this "diagnostic confusion" finally came out into the open, it took years for our home-school rapport to normalize. Today, I finally feel that my children are appropriately valued and cared for by my school system.
And now, almost twenty years after its debut on the diagnostic scene, the APA is pulling the Asperger's label from it's latest revision of the DSM and moving away from providing diagnosis based on IQ. Asperger's, along with Pervasive Developmental Disorder-No Other Symptoms and Childhood Disintegrative Disorder, will be folded back under the Autism umbrella. A great many people are not happy with this move. Some are worried that their affected family members will no longer be eligible for supports and services. Some are unhappy to be losing the cachet that an Asperger's diagnosis sometimes bestows. Some are concerned that the diagnosis will be useless because it will attempt to put too large a range of abilities and deficits under the same category, turning autism into a (wait for it...) waste basket diagnosis. I actually expect for my son to be welcomed back into the autism camp and hope that this change makes accessing transition supports a little easier during these last years of his childhood – though nothing in this journey so far has been smooth or predictable, so perhaps I'm deluding myself. We'll see.
There's a saying in the autism community: If you know one child with autism... you know one child with autism. In advocating for my son without a useful diagnosis, I've always had to demand that the people that work with him look at him as an individual. This has not always been intuitive or easy. Despite the fact that IEP teams are mandated by special education law to develop Individualized Education Plans that unearth and examine the strengths, weaknesses, and aspirations of each special education student, the practical reality is that schools prefer to place children into pre-existing systems based on labels and hierarchies. By turning autism into such a broad label, the APA is essentially telling schools that they will have to look at each child as an individual – a fact that will be incredibly disruptive to business as it currently functions but may, in the long run, benefit affected children and result in better service delivery, better education.
I may be in the minority but I am okay with saying goodbye to Asperger's...
