Defining “Intellectual Disability”

Does the “ID” Label Do More Harm Than Good?

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CommunicationFIRST recently submitted comments in response to the American Psychiatric Association’s (APA) July 1, 2019 public call for input on a proposed revision to the definition of “intellectual disability” (ID) in the current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), originally published in 2013.

We decided it was important to weigh in because the vast majority of CommunicationFIRST’s constituency either receives a formal diagnosis of ID or is treated as such. Any proposed change to the diagnostic criteria, therefore, stands to significantly impact our population.

Our submission made the following key points:

  1. Including “adaptive functioning” in the ID diagnostic criteria leads to harmful over-diagnosis. Individuals labeled as having an intellectual disability are almost universally denied access to robust communication tools, freedom of expression, self-determination, community integration, and meaningful education and employment. This over-diagnosis harms CommunicationFIRST’s population in particular. Burdened with the prejudicial low expectations that universally accompany an ID label, most people who cannot speak or access effective augmentative and alternative communication (AAC) tools are doomed to a life of under-education, segregation, dependence, isolation, and poverty.
  2. Adaptive functioning should not be considered at all when diagnosing ID—it should be considered when evaluating need and eligibility for supports and services. Whether someone needs and is eligible to receive adaptive functioning supports and services should have no bearing on whether they have a diagnosis of ID. People should be able to receive necessary supports regardless of their intellectual abilities.

You can access the full CommunicationFIRST submission in PDF format here.