Promoting Inclusivity in Patient Care RESULTS The healthcare organization …
In recent years, support needs language has replaced functioning labels. Characterizing neurodistinct people as high or low functioning is offensive and inaccurate. Most often, neurodivergence is characterized by a ‘Spiky Profile’ where a distinct pattern of strengths and support needs are expressed. Given the preponderance of evidence demonstrating spiky profiles, calling someone “low functioning” minimizes their strengths and capabilities. Similarly, “high functioning” characterizations create assumptions that they do not have support needs and fail to capture that their optimal functioning depends on optimal environments. In the world of work, knowing a neurodistinct employee’s specific support needs is incredibly useful, while assigning them a functioning label holds no value whatsoever.
Reference to “neurodiverse individuals” is perhaps the most commonly misused neurodiversity language. Like biodiversity, only populations, not individuals, can be neurodiverse. When referring to individuals, the safest term to use is neurodistinct. While many self-advocates and neurodiversity-affirming organizations use the word neurodivergent, others find that “divergent” carries a negative connotation and perpetuates deficit-based notions of neurodivergence. Tim Goldstein, an autistic self-advocate and thought leader who coined the term neurodistinct, feels that neurodivergent is “opaque” and “unapproachable.” On a recent episode of the Neurodiversity Gold Podcast, Tim explained, “I like to be distinct. I’ve always wanted to be distinct in my life. That sounds better than neurodivergent. The root of that is divide, separate.” Given these valid objections, neurodistinct is the language we should default to. That said, when engaging with neurodistinct people, give credence to their preferred language.
Identity-first language has gained the most traction and consensus of the evolutions described in this article. Examples of identity-first language include saying ‘autistic’ or ‘dyslexic’ rather than ‘child with autism’ or ‘person with dyslexia.’ Vanderbilt University’s Frist Center for Autism & Innovation explains that identity-first language affirms neurodivergence as a positive aspect of one’s identity. In contrast, person-first language might suggest that neurodivergence is something to be ashamed of. More perniciously, person-first language runs the risk of casting neurodivergence as an affliction that has latched on to neurodistinct folks. Such portrayals contribute to a research and policy agenda that seeks to cure the uncurable rather than invest in systems capable of improving the lives of neurodistinct people. In an interview with NPR, autistic self-advocate and author Eric Garcia explains, “It’s not something you can remove from us. To remove it from us would be to fundamentally change who we are.”