Text adapted from "Intellectual and developmental disabilties" in Psychiatry in primary care by Yona Lunsky and Johanna Lake, (CAMH, 2019).
Primary care practitioners are often the first and most constant health care contact for people with intellectual and developmental disabilities (IDD). People with IDD often have complex health care needs, and they have higher rates of psychiatric disorders than do people without these disabilities. Although a formal diagnosis of IDD may require specialist referral or consultation, primary care practitioners play an important role in screening and identification, and in providing interventions that are adapted to the needs of patients with IDD and co-occurring mental health problems.
Both intellectual disability and autism spectrum disorder (ASD) are classified as neurodevelopmental disorders in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013). Neurodevelopmental disorders, however, are distinctly different from the traditional psychiatric disorders that often develop in adolescence and adulthood. When these disabilities and disorders co-occur, it is important to understand the context and tailor treatment to address the specific needs of the patient.
All neurodevelopmental disorders are characterized by developmental deficits that are typically present and recognized early in the person’s life. These deficits produce impairments in personal, social, academic and occupational functioning. Although these disorders are present from childhood, they are not restricted to that period, but rather, are lifelong conditions.
In Ontario and other parts of Canada, the term “intellectual and developmental disabilities” (IDD) captures both intellectual disability and ASD, as well as other diagnoses, such as fetal alcohol spectrum disorder.
Using person-first and identity-first language
People with IDD have a long history of stigma and discrimination related to their disability, and it is important to understand some of the sensitivities around how these conditions are referred to. For example, there are longstanding concerns in the intellectual disability community about the pejorative nature of the term “mental retardation,” which is why it is no longer used in medical nomenclature. In DSM-5, the term has been replaced by “intellectual disability.”
However, some adults do not like the term “intellectual disability.” In the United Kingdom, for example, the more common term is “learning disability” or “learning difficulty.” Similarly, some people in the ASD community are not comfortable with the word “disorder,” promoting instead the term “autism spectrum condition” or simply using the broader term “autism.”
There is also strong advocacy for person-first language, which recognizes that a person has a disability, but is not primarily defined by it (e.g., a “person with Down syndrome” versus a “Down’s person”).
At the same time that person-first language is being promoted, some people in the disability community have been pushing for identity-first language. For example, some adults on the autism spectrum prefer the term “autistic adults” or “autistics,” rather than the person-first term “adults with autism.” The choice is about empowerment and pride. It says that autism is not something to be ashamed of and that it is very much part of the person’s identity, a perspective that reflects the neurodiversity movement.
Ultimately, when working with your patients, it is important and respectful to ask how they would like you to speak about their disability. There is no one way to do this correctly.