A Case Against Retesting for Autism

retesting for autism

Are you wondering if you should get your child retested by a psychologist? You are not alone. Many parents of autistic children and autistic individuals themselves consider taking a second test to see if their symptoms still fall under the diagnostic criteria for autism. If an individual feels that he or she has been misdiagnosed, a reassessment may be a proper tool for identifying the accuracy of a diagnosis or determining a more appropriate diagnosis. However, I would caution parents against seeking out reassessments for their children in an effort to get rid of a diagnosis or a stigma attached to it.

Why We Won’t be Retesting for Autism

Some schools require retesting for autism every few years. This may be outside of the parent’s control. Other times families decide to seek out a clinical psychologist outside of the school system when retesting for autism to see whether their child still fits under this label. The decision to retest is personal to each family and may be based multiple factors. In this post I will share my personal feelings about the decision to retest my son, who was diagnosed at 4 when he only spoke a few words and now is 7 and has essentially caught up with his peers verbally. Many people have asked me if I am going to get my son retested for autism. After all, they say, he doesn’t “look autistic,” and “now that he is verbal, maybe he no longer meets diagnostic criteria.” I tell them no, I will probably never retest him. Here are some reasons why:

  • My son is not a lab experiment. I will not use him as a body on which I test specific therapies or interventions and then retest him to see if he can shed the label–if he will be “cured.” I also don’t want to communicate to him that his autism is something we are trying to get rid of, and that if he tries really hard to not be autistic, we would be proud of him. My desire isn’t to cure him; he doesn’t need to be cured. I want him to try every day to be a moral person, not be like everyone else.
  • His diagnosis acknowledges a disability that signals the need for specific supports and services that are tailored to him. These services are useful to his academic, social, and emotional development. As long as I see a need for these services, I think it is irresponsible for me to make an effort to get rid of an autism label.
  • Just because my son may not “look autistic” at first glance, doesn’t mean he isn’t. I may be able to fill in standardized bubbles that reveal more typical behavior he has exhibited, and he may answer questions or behave in ways a psychologist may expect neurotypical children to; however, he has learned this behavior with great effort. It has not been the result of a natural acquisition. Why does this matter? Because it still may be more difficult for him to perform everyday tasks that neurotypical people find simple and natural. This includes communicating with peers and adults, participating in academic tasks, playing a game at recess, or even eating in a lunchroom. “Passing” for neurotypical doesn’t mean that you are neurotypical. As each of these contributors has illustrated, an autistic child tends to work harder to live in a neurotypical society, and retesting kids to merely get rid of their label denies them this part of their identity, and often the consequential supports that come with the acknowledgement of autism.

There are certainly legitimate reasons a family (or autistic person) may have for wanting to retest their child for autism; I am only describing here why I have no desire to do so for my son right now. When my son entered kindergarten, he had to be retested for autism to confirm the diagnosis that a psychologist had already made. The school required an educational psychologist to confirm the diagnosis in order for it to be written on his I.E.P.. As I was answering questions about him on the parent portion of the survey, I realized that I wanted to add comments underneath many of the questions. For example, “Does he make eye contact?” Yes, but with effort, I thought. I realized that I would have answered many of the questions differently a year prior to this test, but I didn’t feel a liberated sense that “Yes! He’s been cured!” Instead, I felt saddened that the test might not capture his specific academic needs. His diagnosis was confirmed by the educational psychologist, so I never needed to attack his special education team with the defense I’d prepared.

I feel uncomfortable around parents who get excited about retesting for autism after their child has had a few years of therapy, or after trying a new medicine or intervention. As children grow, it may be more obvious whether their diagnosis is in fact genuine or an inaccurate description of another condition, or even a hasty categorization and attempt to label something that doesn’t exist. While I think it’s foolish to cling to a diagnosis that doesn’t exist, I think it’s just as foolish to try to shed a diagnosis just because some people think it has an ugly name, it is limiting, or makes them look bad. I’d rather fight the stigma attached to the label while teaching my son that his label is a description of his wonderful personhood, than feed the stigma by trying to separate my life or my son’s life from the label of autism.

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