Strides are being taken in autism terminology as the term “profound autism” has been officially recognized by The Autism Science Foundation (ASF) for the first time.
The new Lancet Commission report has formally recognized the need for, and endorsed the use of, the term “profound autism” for the first time in a peer-reviewed medical journal.
According to ASF, the term is critical in order to distinguish individuals who have high dependency or support needs. It can be used to describe people on the spectrum who are unable to advocate for themselves and are likely to need 24-hour support throughout their lives.
“As an autism advocate and mother of a child with profound autism, I am thrilled to see The Lancet formally recognize the term profound autism, which provides critical specificity within the extremely broad autism spectrum,” said ASF Co-Founder and President Alison Singer, a member of the Lancet Commission.
Autism Parenting Magazine Editor comments on “profound autism”
Emily Ansell Elfer, Editor of Autism Parenting Magazine, has welcomed the news, stating: “Autism is a spectrum and most of us in the autism community know Dr. Stephen Shore’s quote ‘If you’ve met one individual with autism, you’ve met one individual with autism’. The word ‘autism’ is as applicable for highly independent individuals as it is for people who require lifelong support, which makes it difficult for some members of the public to understand what being autistic truly means.”
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“Outdated terms such as low functioning and high functioning have previously been used to describe the needs of autistic people and are seen by some in the community as offensive,” Emily continued. “Whether ‘profound autism’ will be well received as a term moving forward is yet to be seen, but it could be a more respectful way of describing people who require significant support.”
A term for those who cannot advocate for themselves
The Lancet Commission suggests “profound autism” should be used to describe people on the autism spectrum who are minimally verbal or nonverbal, are not able to advocate for themselves, and require round-the-clock access to an adult who cares for them. The authors suggest the terminology be used to encourage both the clinical and research global communities to prioritize the needs of this vulnerable population.
It has been suggested by the journal’s authors that the term “profound autism” could apply to anywhere between 18% to 48% of people on the autism spectrum.