Last updated on November 26, 2023
“I celebrate every autism diagnosis!” declares a post circulating among autistic self-advocates.
I read this in several ways.
First, the positives. Diagnoses help individuals receive services and supports. For many people, a diagnosis also helps understand struggles. Diagnoses also ensure, with disclosure, some legal protections.
The negatives exist, too. Believe it or not, the Diagnostic and Statistical Manual excludes some diagnoses as comorbid (co-existing) with autism. Therefore, an Autism Spectrum Disorder (ASD) diagnosis can remove other important diagnoses, as my wife and I have discovered. The DSM5 “levels” of autism are also used by schools to suggest some services aren’t needed. After all, a “Level 1” surely doesn’t need significant supports, right?
It is a shame assessments are expensive, time-consuming, and a privilege of class, location, and other factors. Because our daughters were in the foster care system, their early assessments were covered by the state. I’m not sure I would count that as a “privilege” since the cost to the children was high.
Leigh, our nine-year-old, began the latest assessment on her birthday. From the initial intake interviews to the final report was six weeks or so.
Her diagnostic label was changed to ASD “Level 1, across the matrix” in the assessment. I’m “A2/B1” and she’s “borderline 1-2” in the “A” domain of social skills and communication.
What do the domain levels even mean? Are they valid? My “1” during an evaluation might be “2” or “3” under stressful conditions. It is an interesting debate within autism communities since the DSM is a subjective, non-medical, observational checklist. Labels change, models change, and we’re supposed to make as much sense of things as we can.
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
(1) Deficits in social-emotional reciprocity
(2) Deficits in nonverbal communicative behaviors used for social interaction
(3) Deficits in developing and maintaining relationships, appropriate to developmental levelB. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
(1) Stereotyped or repetitive speech, motor movements, or use of objects
(2) Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change
(3) Highly restricted, fixated interests that are abnormal in intensity or focus
(4) Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment
And each of these two domains is assigned a level of severity by the assessor, ranging from (1) minimal supports required to (3) very substantial supports necessary.
Autism, as the evaluators noted, is not our primary concern with the girls. We were their foster parents for many years and anticipate that trauma issues should be our focus when supporting our daughters. Yet, the trauma diagnostic criteria keep changing, too.
The DSM5 now disallows comorbid diagnoses of Reactive Attachment Disorder (RAD) and autism, which is absurd. At least they don’t disallow ADHD and autism, which is a common dual diagnosis.
The DSM is deeply problematic. I spent a good deal of my doctoral studies critiquing how convoluted the update was after issues with the DSM-IV-TR.
Being an autistic and autistic parent requires debating a mental health system that seems intent on denying lived realities.
Celebrating a diagnosis our daughter needs to secure her educational rights would be celebrating the lack of inclusion within our schools and wider society.
If we appreciated people as they are, without requiring proof or evidence of some differences, that would be a reason to celebrate.
The new evaluation and labels will provide IEP/504 Plan debate points, based on our past experiences with schools. Not only are we dealing with the post-COVID return to school, but a new set of diagnostic labels.
Individualized Education Plans are required for students with specific disabilities, which includes autism. The Individuals with Disabilities Education Act (IDEA) ensures that schools tailor learning goals for students eligible for IEPs. A student with an IEP does not always meet the same academic outcomes as classmates.
I don’t want lower expectations for Leigh or her sister Anne.
By contrast, 504 Plans only offer additional supports and accommodation to students, without changing (lowering) academic goals. A student with impaired vision or hearing might qualify for a 504 Plan because the physical disabilities do not suggest a cognitive, intellectual impairment.
The autism label being within the realm of IEPs tends to signal that a student cannot meet academic objectives. Teachers assume a lot, mostly negative, about Neurodiverse students. They can claim otherwise but listen to the deficit model of autism invoked by educators.
Autism is a label defined by deficits a person is expected to overcome with supports. We can wish for a different model, but that’s the one we have and the mental health model my wife and I need to make work for our daughters.