A Teaching Aside
This is a post concerning a student losing their diagnosis of autism at a 3 year follow up. For disclosure, my perspective on this situation comes from a general dislike of the DSM-IV-TR and what has been a tendency toward liberally diagnosing (i.e., over diagnosing) of Autism Spectrum Disorders within the last decade.
This third grade student (“Adam”, obviously not this student’s real name) has been in a small group classroom for autistic students and I have been working with them. However, from the first day I worked with Adam I was a bit confused because I did not see the traits I normally associate with autism. I saw some profound intellectual disability and a general lack of appropriate social behavior, but not autism.
Adam generates stories in their head about what people are going to do to cause harm. And some of these stories are rather graphic (one involved being pushed down stairs and being kicked in the head until dead). Adam also perseverates on what they think the other students are thinking about doing in the near future and punishes the other students for thinking about causing harm (usually by screaming, “That’s IT!”, storming across the room and trying to hit the other students with a chair WWE-style or punching them). Adam also began screaming at other students, “They are trying to scare me! Argh! THEY HATE ME, I CANNOT STAND IT!” because the students were making hissing noises across the room, not even looking in Adam’s direction or even aware Adam was in the room.
Adam also shows problems having a grasp of reality and fantasy. They are convinced they are married to Lightning McQueen and have to figure out how to make their spouse human. Adam becomes irate and inconsolable if it is Tuesday when they want it to be Wednesday-and physically attacks anyone that asserts otherwise. Adam has developed an increasingly disruptive problem with moving on from one activity to another. They stand up early, demand to be allowed to move early to the next activity, but have to immediately be allowed to go back to the previous table to do the task they had just finished. It is as if the proper sequence of events is not processed correctly by Adam but rather gets jumbled. This has turned into a daily battle in which the teacher has to take Adam off to a corner because Adam has begun attacking students, throwing chairs, and trying to force their will upon everyone. Adam will also scream when being disruptive that they just want to do some unrelated task from a week or more ago that they just thought about and will disregard an entire day’s work to pursue this random, inappropriate thought.
Adam does have serious deficits for appropriate social behavior. But Adam does seem to understand social interactions and how to act appropriately, they just fixate on either some paranoid or random ideation that takes the place of reality. This fixation removes them from any social group and makes them awkward and inappropriate. However, Adam can be perfectly appropriate at other times.
Wait, none of these behaviors are congruent with an ASD diagnosis
No, they are not.
However, the history of Adam’s ASD diagnosis was that the family was given the autism checklists and the diagnosis was made by a specialist with the expectation of seeing an autistic child. This was under the DSM-IV-TR criteria for Autism Spectrum Disorders. In my opinion Adam was misdiagnosed because ASD was an easy diagnosis that would give the parents the help they wanted to manage Adam’s behavior. From that point on, Adam was placed in special classrooms dedicated to teaching children with autism and treated as an autistic child with serious deficits for social interactions that needed to be worked on.
Fast forward a few years and we find another story. Given the new criteria in the DSM-5, the concomitant diagnosis of intellectual disability disorder needs to be independently evaluated, not just added to an autism diagnosis based on low IQ scores. In dotting the i’s and crossing the t’s, adaptive function was specifically evaluated. This is a necessary step since an intellectual disability disorder no longer depends primarily on low IQ like the mental retardation diagnosis in the earlier DSM it replaces. An intellectual disability diagnosis now requires a profound lack of adaptive function. In short, by specifically evaluating adaptive function, it was determined that Adam’s poor social skills were in the domain of social adaptive function. Not in any of the domains specifically attributed to autism. In fact, Adam failed to specifically meet any of the diagnostic criteria for autism.
However, Adam met all the criteria for intellectual disability disorder, and the adaptive behavior deficits fit Adam eerily to a “T”. So we now have a student with intellectual disability but no autism.
What we regret most as a team of teachers is that by putting Adam in an autism-centric classroom and exposing them to only autistic peers with poorly formed social skills, we have actually done a grave disservice to Adam. In other words, by trying to cure a nonexistent autism, we only reinforced poor social skills in Adam by only requiring that they show appropriate social skills compared to the rest of the autistic children in the classroom. We have not provided “normal” kids or peers in a mainstream school environment. We have not specifically corrected inappropriate behaviors when they were still better than the rest of the class. In other words, we failed Adam because we paid more attention to the diagnosis rather than the child.
So what can we do for Adam
Basically what we are doing for Adam is relatively simple and straightforward. We no longer assume Adam is autistic. We have been requiring that Adam stay in the reality that the rest of us have agreed upon as the real one. We require that Adam not make things up and perseverate on problems, assignments, etc. long past. We require that Adam transition from one task to the next properly and not be disruptive. We hold Adam to task. We no longer assume that Adam has to work to overcome autistic tendencies. In other words, we are trying to help Adam overcome any bad habits that may have been picked up over the last 3 years of being in small group autism classrooms. The goal is to get Adam into a resource or self-contained classroom next year. That is the right place to be, and access to non-autistic peers daily at school will only benefit Adam. Also, life skills classrooms are better equipped for Adam, as the teachers specialize in improving adaptive function, both in academic and general life contexts.
I truly hope that Adam will benefit from the change. In my opinion losing an autism diagnosis will be the best thing for Adam because it was a false label that only held Adam back. I feel really bad that we have not been able to give Adam what they need this past year. My fingers are crossed that Adam will be able to thrive in their new environment next year because they are as young as they are. I know I for one will be cheering Adam on…