Putting labels on people can often go wrong, leading to inaccuracies, generalizations, hurt feelings, and discrimination. But sometimes labels, especially when used carefully and wisely, can also be helpful descriptive terms that make all the difference in our understanding of a person’s needs. We hope that the Autism Science Foundation’s newly recognized term “profound autism” can fit into the latter category.
The Lancet recently published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism. The report introduces the term “profound autism” to describe people who are likely to require a high level of support for their entire lives and those who cannot speak up for themselves because they are generally minimally verbal or nonverbal.
“The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives,” writes Alison Singer, a member of The Lancet Commission on the Future of Care and Clinical Research in Autism. “The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need.”
It is the commission’s hope that having a “concise, meaningful term” like this one will help people with autism get appropriate care and interventions and will assist people in understanding their needs.
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The commission also claims people in the “profound” category are “at risk of being marginalized by a focus on more able individuals.” This risk, they say, is another reason why the term is important.
The report suggests that their new term could be applicable to anywhere between 18 and 48 percent of people on the autism spectrum.
Autism, of course, is a wide spectrum, with no two people on it being exactly alike. No diagnosis is quite the same either. But entirely refusing to place any labels on people with ASD only serves to prevent clinical specificity and keep people from getting help when they need it. There are arguably instances in which labels are necessary, provided they’re used appropriately and respectfully.
How do you respond to the term “profound autism?” Is it one you can see yourself using and would be okay with others using? Or does it come off as offensive, the way many people feel about terms like “high-functioning” and “low-functioning?” We can only hope that it will be used with respect and be a helpful addition to our collective knowledge of autism spectrum disorder.
Source: The Autism Site Blog
