Push To Add ‘Profound Autism’ Label Gains Steam
Support for recognizing profound autism as a separate psychiatric diagnosis has gained momentum recently with several high-profile endorsements.
Since a 2013 change to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM, autism spectrum disorder has been an umbrella diagnosis encompassing everyone from mildly affected individuals who used to be diagnosed with Asperger’s syndrome to those who are nonverbal and require 24-hour care.
That’s far too broad, said Amy Lutz, vice president of the National Council on Severe Autism.
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“It’s not useful to think of everybody having the same disorder, including a range of presentations from people who are law school graduates to those who are still in diapers and nonverbal,” Lutz said. “It’s not helpful for research or therapeutics. It’s become a meaningless category.”
The council adopted a position statement in October asking the American Psychiatric Association to revise the DSM to include a “distinct, stand-alone diagnostic category” for severe autism.
“The umbrella ASD diagnosis has marginalized a growing population of individuals whose neurobehavioral pathologies are among the most alarming and disabling in the entire field of psychiatry,” reads the statement.
Identifying autism as a spectrum that includes a growing number of people with no intellectual disability has led to potentially unintended consequences in research, government and culture, said Alison Singer, co-founder and president of the Autism Science Foundation.
“Whether you had an IQ of 50 or 150 you were diagnosed the same,” Singer said. “This turned out to be a huge problem. A group of very high-functioning people were called upon to represent autism at policy tables and in the media.”
The emergence of high-achieving characters with autism on television shows like “The Good Doctor” meant “this is the only type of autism the public sees,” Singer said.
The autism self-advocacy community has been more successful in driving research and helping craft policies, including Medicaid coverage for community-based services, she added.
“No one is saying they don’t need supports and services, we’re saying they need different supports and services,” Singer said.
The push for a separate diagnosis gained a world-class endorsement last week when a commission of top autism researchers, providers, self-advocates and parents from six continents released a report calling for recognition of “profound autism” in people with severe intellectual disability and minimal communication who need around-the-clock care.
The report from The Lancet medical journal’s commission on autism proposes the term be used for administrative, but not diagnostic purposes, so that “its introduction will spur both the clinical and research global communities to prioritize the needs of this vulnerable and underserved group of autistic individuals.”
The term “profound autism” was coined by Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment and the co-chair of The Lancet commission.
The term may apply to 18% to 48% of people with autism, according to the researchers.
“In our community, people are very much in support of a carveout for severe autism,” said Jill Escher, president of the National Council on Severe Autism. “As the definition becomes amorphous and muddy, their children who are among the most severely disabled people in the field of psychiatry are getting lost.”
There is opposition to splitting up the spectrum from neurodiversity advocates who eschew labels like high- or low-functioning and among some parents whose children might be considered to have “profound autism,” said Julia Bascom, executive director of the Autistic Self Advocacy Network.
“The reality is that autistic people, just like people with Down syndrome or cerebral palsy, have a wide range of abilities and support needs, for lots of different reasons,” Bascom said. “Autistic people need and deserve better services, especially those of us with the highest needs — but the ‘profound autism’ label doesn’t help.”
Shannon Rosa, who writes the blog “The Thinking Person’s Guide to Autism,” said using a label like profound autism segregates people from the needs and services of the wider autism community.
“What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities — in addition to the wider autistic community,” Rosa wrote in a recent blog post.
While calls for a revision to the autism diagnosis are mounting, the American Psychiatric Association has not signaled that a change is imminent.
Anyone proposing a change to the DSM must start by submitting a proposal to the association.
“This will require the submission of supportive information including the reasons for the change, and data documenting improvements in validity, evidence of reliability and clinical utility, and consideration of potential harmful consequences,” reads a statement from the association.
The National Council on Severe Autism wanted to get ahead of any revision discussions in the hope that clinicians will consult members of the community, Escher said.
“Ultimately the goal is to more reasonably tie a response — whether that be an intervention or policy — to the underlying disability,” Escher said. “If the DSM-5 remains the same without any really meaningful differentiation among the different autisms, we run the risk of increasingly overlooking this very large and growing population of children and now young adults with severe impairments.”
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