Autism AMA: Diagnosis

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Megan asks:

The APA recognizes five “dimensions” of Autism that lie on the spectrum: Aspergers, Rett’s Disorder, PDD NOS, Autistic Disorder, and Childhood Disintegrative Disorder. Where do you fall on the spectrum? When were you diagnosed, and what were the first behaviors that were presented that led your parents or teachers to refer you to a clinician?

With the APA’s publications of the DSM-5 in May of 2013, these dimensions are categorized together as Autism Spectrum Disorders. This has also changed how Asperger symptoms are diagnosed under the new guidelines. There are four main criteria, under which are numerous sub-criteria that must either be met collectively or individually depending on the category:

  1. Deficits in social communication and interaction not caused by general developmental delays.
  2. Demonstration of restricted and repetitive patterns of behavior, interest or activities.
  3. Symptoms must be present in early childhood (May not become apparent until social demand exceeds limited capacity).
  4. Symptoms collectively limit and hinder everyday functioning.)

Then the diagnosis is measured for severity. Different “dimensions” of the previously used DSM-4 would measure with different severity levels under different criteria. (As an aside, there is ongoing research that could lead to ADHD being one day reclassified as an Autism Spectrum Disorder.)

That said, most of those labels will probably be used colloquially for a few more years. Under the DSM-IV (which was the first publication to acknowledge high-functioning autism and Asperger Syndrome), I would have fallen under the Asperger’s category rather than autism largely due to having no reported language delay in early childhood. As to how I discovered this about myself – well, sit back. This is a long story.

When I was a child, the DSM-3 (published in 1980) was in full use. At that time, autism was categorized alongside mental retardation. This means a child or adult would need an IQ at least one standard deviation lower than average to be considered for an autism diagnosis. Since my IQ was and is considerably higher than 85, there was no diagnosis. I often joke that there were three main categories for children in the DSM-3: Hyperactive, Retarded, and Get Over It. Since did not fall under the first two, I was in the third. So, while I was an odd child, sometimes problematic and prone to outbursts, occasionally argumentative, antisocial, and accused of “daydreaming”, I was also very smart, organized, clean, and got good grades. So no one referred me to anything. The DSM-4 was first published in 1994, by which time I was a sophomore in high school, a little too late.

Self-realization has come in stages. The first came in high school, when (incidentally the same year the DSM-4 was to be published) I had a moment of blinding self-clarity, realizing that 1. I had next to no friends, 2. I had no idea how to *make* friends, and 3. I kind of smelled bad. Number three was easy to fix, and I’ve been quite the fastidious one about hygiene ever since. The first two were a bit harder, so I went about studying the social interaction of the species homo sapiens. From that, I discovered social habits of likable people, and I began to practice them myself. In short, I developed a character of sorts I wore in public, and I still wear him to this day. (It’s also why I’m terrible at theatre, because it has to be me, pretending to be Social Me, pretending to be this character, and then some weird Inception-level stuff happens, and I just can’t keep up.)

Stage two is really short. My would-be wife was working on her psychology degree, concentrating on neurological psychopharmacology, and I was helping her study for an exam. This was in 1998 or 1999. Suddenly, she said: “You know, you should look into autism. I think you may be autistic.” (Actually, her statement was more thought-out than that and contained evidence.) I immediately dismissed her hypothesis and went about our study session. Now this is important: If you ever want an autistic person to change their mind, you have to make them think they discovered the contradictory information themselves. This can take a long time.

Stage three happened in 2001. I entered my role as a classroom teacher and immediately thought I was going crazy. Somehow, I had managed to stay in very sensory friendly music environments all the way through my college career, including internships and student teaching placements. I was completely unprepared for how painful the sound of the recorders would be, the sheer number of transitions, the challenges involved with internally prioritizing the various stimuli happening every second in an elementary classroom setting. I was at near-panic levels every day, and I was having a hard time controlling my temper, and I had no idea why.

Stage four happened in 2003. We were putting a boy through the GEI process (which would later evolve into RTI). His name was Nick. He had been in Mary’s third grade class my first year teaching. Now he was in Kim’s fifth grade class. I liked Nick. He reminded me of myself, uncannily so. He still does in some ways. Anyway, this boy was going through the GEI process for the umpteenth time, but his parents were patently refusing to allow testing for their son. The team was gathering all of the evidence, and, while they were doing that, they were effectively making the case that I’m autistic, so I went to research individually, and found the case compelling, so I made it my mission to convince mom and dad to test. I realized, however, that a diagnosis for any child would likely mean a retroactive diagnosis for one or both of the parents, since Autism Spectrum Disorders have a high hereditary correlation.

Through working with myself and them, I developed what I called the Stages of Grief for Self-Identity, derived from the Kübler-Ross model for grief. When a child is going through the autism screening process, a parent will often see him- or herself in the rubrics. When this is the case, they have to reach a stage of acceptance before they can allow their child to receive a diagnosis. It goes like this:

  • Denial: “There’s nothing wrong with my child. They’re just like me.”
  • Anger: “Why are you singling out my child? Why won’t you give him/her a chance?”
  • Bargaining: “Just wait a couple more years. I’m sure this is just a phase.”
  • Depression: “I don’t know why I try. You must think me a terrible parent.”
  • Acceptance: “A diagnosis for my child is basically a diagnosis for me.”

I’ve been through all of those, and I worked to help Nick’s parents navigate those same emotions. When his diagnosis came back as Aspergers Syndrome, I had my answer. I’ve never sought formal diagnosis. I have a ton of excuses, but no good reasons. I kind of just like things exactly how they are. It was tough enough to get to where I am that I don’t want to add any more variables that could upset my happy equilibrium.

I hope that helps you understand my journey, and maybe it can help some of you work with parents who might be living in denial land.