This article originally appeared onThe Defenderand was republished with permission.
Guest post byMichael Nevradakis, Ph.D.
A federal advisory committee last week recommended adopting the term “profound autism” to refer to a subset of people with autism who require the greatest degree of support in their day-to-day lives.
The new recommended definition differs from previous definitions — if adopted, the term will no longer include limited cognitive ability as a condition of being diagnosed with profoundautism.
TheInteragency Autism Coordinating Committee(IACC), which reports to U.S. Health Secretary Robert F. Kennedy Jr., made the recommendation during its first meeting since Kennedy took over at the U.S. Department of Health and Human Services (HHS).
In January,Kennedy appointed21 new membersto the committee, which advises the secretary on autism-relatedpolicyand research. The committee’s recommendations are non-binding.
According to theIACC’s recommendation, the term “profound autism” would include people age 8 or older with a preexisting autism diagnosis and with the following characteristics:
Minimal or no functional speech, defined as non-speaking; or limited to single words or 2-3 word phrases used primarily for basic needs, wants, or protests; and/or with limited ability to engage in flexible, reciprocal, or generative communication — meaning spontaneous, non-prompted, and contextually varied communication exchange.
A need for continuous or near-continuous supervision and substantial assistance with activities of daily living to meet basic needs.
If adopted, the recommended definition will act as a “standardized functional research and policy designation” that would inform federal research and policymaking on autism-related issues.
Source: The Vigilant Fox
