Push to add the label “Deep autism” is gaining ground

The latest edition of the Diagnostic and Statistical Manual of Mental Disorders was published in 2013. Some suggest that the autism entry in the manual should be revised. (Handicap Scope)

Support for the recognition of profound autism as a separate psychiatric diagnosis has recently gained momentum with several high-profile approvals.

Since a 2013 amendment to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM, autism spectrum disorders are a general diagnosis encompassing everyone, from mildly affected individuals who were previously diagnosed with syndrome. Spray on those who are not verbal and need 24 hour care.

It’s way too broad, said Amy Lutz, vice president of the National Council on Severe Autism.

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“It doesn’t help to think of everyone with the same disorder, including a range of presentations ranging from law graduates to those who are still wearing diapers and not speaking,” Lutz said. “It’s not useful for research or therapy. It has become an empty category.

The council adopted a position statement in October, asking the American Psychiatric Association to revise the DSM to include a “separate and stand-alone diagnostic category” for severe autism.

“The general diagnosis of ASD has marginalized a growing population of individuals whose neurobehavioural pathologies are among the most alarming and disabling in the entire field of psychiatry,” the statement read.

The identification of autism as a spectrum comprising a growing number of people without intellectual disabilities has had potentially unintended consequences in research, government and culture, said Alison Singer, co-founder and president of Autism Science Foundation.

“Whether you have an IQ of 50 or 150, you’ve been diagnosed with the same,” Singer said. “It turned out to be a huge problem. A very high level group of people have been called upon to represent autism at political tables and in the media.

The emergence of high performing autistic characters on TV shows like “The Good Doctor” meant “this is the only type of autism audiences see,” Singer said.

The autism self-advocacy community has been more successful in leading research and helping to develop policy, including Medicaid coverage for community services, she added.

“Nobody 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 world-class approval last week when a commission of top autism researchers, providers, self-advocates and parents from six continents released a report calling for recognition of “the profound autism ”in people with severe intellectual disabilities and minimal communication that needs 24 hour care.

the report The Lancet medical journal’s commission on autism proposes that the term be used for administrative purposes, but not diagnostic, so that “its introduction will prompt the global clinical and research communities to prioritize the needs of this vulnerable and underserved group of autistic individuals “.

The term “profound autism” was coined by Dr. Catherine Lord, professor at the Center for Autism Research & Treatment at UCLA and co-chair of The Lancet commission.

The term may apply to 18% to 48% of people with autism, the researchers say.

“In our community, people are very supportive of an exclusion for severe autism,” said Jill Escher, chair of the National Council on Severe Autism. “As the definition becomes amorphous and muddy, their children, who are among the most severely disabled in psychiatry, are lost. “

There is opposition to dividing the spectrum from neurodiversity advocates who avoid labels as high or low functioning and among some parents whose children might be considered to have “deep autism,” said Julia Bascom, director. Executive of the Autistic Self Advocacy Network.

“The reality is that people with autism, just like people with Down syndrome or cerebral palsy, have a wide range of abilities and support needs, for many different reasons,” Bascom said. “People with autism need and deserve better service, especially those of us with the highest needs – but the label ‘deep autism’ doesn’t help.”

Shannon Rosa, who writes the blog “The Thinking Person’s Guide to Autism,” said using a label such as deep autism separates people from the needs and services of the wider autistic community.

“What parents of children with autism like me need increased support for is greater awareness and connection with other communities who understand the high supportive traits of our children,” like disability and non-speaking communities – in addition to the broader autistic community, ”Rosa wrote in a recent blog. Publish.

As calls for a review of the autism diagnosis mount, the American Psychiatric Association has not signaled that a change is imminent.

Anyone proposing a modification of the DSM must first submit a proposal to the association.

“This will require the submission of supporting information, including the reasons for the change, and data documenting improvements in validity, evidence of reliability and clinical utility, and consideration of potential adverse consequences”, we read in a press release from the association.

The National Council on Severe Autism wanted to advance any review discussions in the hopes that clinicians will consult with members of the community, Escher said.

“Ultimately, the goal is to more reasonably tie a response – whether it is an intervention or a policy – to the underlying disability,” Escher said. “If the DSM-5 remains the same without any really significant differentiation between the different autisms, we risk increasingly neglecting this very large and growing population of children and now young adults with severe disabilities. “

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