Sometimes losing an autism diagnosis is for the best

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.

The particulars

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…


6 thoughts on “Sometimes losing an autism diagnosis is for the best

  1. Cate Pane: The Clear Parent says:

    Interesting post. Rather than saying that Adam “lost” a diagnosis, I would say that he was initially misdiagnosed. It is obvious to me by your description of his behavior that he never fit the criteria for ASD. I wouldn’t go as far as connecting his misdiagnosis to the “liberal diagnosis” of Autism Spectrum Disorders. However, your advanced degree is a step above mine, so I do take your position seriously. Thank you.


    • Michael H says:

      I agree that “Adam” was misdiagnosed. My bias as I stated in the opening paragraph is that I think ASD was far too liberally used as a diagnosis in the past. I do think that the DSM-5 actually will reduce misdiagnosis and the vast majority of patients that no longer have an ASD diagnosis under the DSM-5 but had one under the DSM-IV-TR were misdiagnosed initially.

      As an aside, my Ph.D. in no way gives me any special abilities or understanding of these issues. Your opinion is every bit as valid as mine when it comes to actual diagnostic issues. I thank you for taking my position seriously, I am taking your opinions and positions seriously as well (especially as I think you are right!)

      Thanks for reading!


  2. mosaicofminds says:

    Because of the title, I came here expecting a post about how losing an autism label could help people who were accurately diagnosed in the first place (a la Deborah Fein’s lab’s “optimal outcome” studies). This turned out to be very different, and probably more interesting!

    I wasn’t familiar with Adam’s particular type of social problems before and hadn’t heard about these changes in intellectual disability definitions. I think you’re right, the fact that autism is the only well-known, visible social disability leads people to think if a child doesn’t function well socially, they must be autistic.

    Maybe I’m missing some crucial information about Adam and his school environment, but I wonder about your assumption that he would be better off in a mainstream classroom. Certainly he hasn’t had a lot of models for positive social interactions. But I’m guessing he’s had teachers who know how to deal with disruptive and aggressive behavior like his? (Something I hear mainstream teachers aren’t required to learn, and don’t necessarily deal with well). I’m also guessing his teachers are patient with him if he takes a while to meet their expectations? Do you think that will still be true in his new classroom? It would be awful if the expectations were raised, but he wasn’t given the tools to meet them, and his new teachers and classmates treated him badly. Do let us know how things turn out for him!


    • Michael H says:

      Yes. We know how to handle these outbursts and we are endlessly patient with Adam’s overall behavior.

      You are right in your trepidations, we have them, too. In Utah we have what are called Life Skills classes that are designed for students with developmental disorders to teach needed skills to get jobs and succeed in society. With an IDD diagnosis Adam will qualify for these courses. We hope at the Junior High and High School level Adam ends up on this track or else doing so well these classes become unnecessary.

      Adam will need an aide to work 1 on 1 with the problem behaviors. We are currently working to fill Adam’s toolkit as soon as possible so that education next year will be made less burdensome.

      Your fear is exactly the same as ours!


  3. intellectualizing says:

    The moral I see here is about individual appropriateness rather than about labels.

    Your description of Adam’s new environment (neurotypical peer models, requiring appropriate behavior, etc) sounds like what (at least many) autistic kids should have too. Our son has those things for example. Just because some things are hard for our son doesn’t mean he shouldn’t be taught those things and expected to practice and learn to respect others.

    I worry when we say overdiagnosis is bad because the diagnosis was harmful or led to inappropriate education. Because that means all those still-diagnosed kids are still (at least potentially) being lumped under a label instead of being seen on their own terms.

    The problem is not that we label a slightly wrong group of kids; the problem is that we abuse labels by taking them as more meaningful than any science we have can justify. Lynn Waterhouse’s book Rethinking Autism does a nice job reviewing how much heterogeneity exists within autism. And this is true even if we use a strict and narrow definition of autism.

    I don’t know the program in Adam’s former autism classroom, but surely it isn’t appropriate for ALL autistic kids. For example some programs are based on the idea that autistic people are visual thinkers, but our son doesn’t appear to be. In intervention studies, there are typically “non responders” to whatever the intervention is being studied. The label simply isn’t enough to guide us on what to do. Autism is too diverse.

    Our son’s team doesn’t use the label at all. They use tools like VB-MAPP (and getting to know him individually) to come up with specific individualized needs.

    With this approach the diagnosis is irrelevant to parenting and teaching – its only role is to make the insurance company happy. We look at what he needs and whether the teaching approach is working for him specifically. That’s it.

    It’s very clear that autism diagnosis can never be perfect. We will always say some kids need more help than they do while others need less than we thought. This line CANNOT be perfected. We aren’t omniscient about the future.

    So when we identify harms associated with diagnosis, we need to remove the harms, not adjust who experiences them.

    Heck that’s true even if diagnosis were perfect.

    Diagnosis should simply mean “would benefit from significant extra help beyond what regular school and parenting can offer.” Rather than trying to encode a whole plan of action in one diagnostic code, just make it a certificate of need. Then look at the individual.

    It does sound like Adam was misdiagnosed and has found a better fit now, which is fantastic. The autism program may be awesome for some kids in it too.

    But I think part of the lesson here might be: if a program’s a bad fit for a correctly-diagnosed kid, they shouldn’t be in there either. Diagnosis shouldn’t be guiding these things.


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