As an influential federal autism committee considers moving to “neutral, strengths-based” language, some advocates are pushing back arguing that stripping words will merely “sanitize” the realities many families face.

Every year, the government’s Interagency Autism Coordinating Committee — a panel of government officials and members of the autism community that’s charged with advising the secretary of health and human services and coordinating federal autism activities — is tasked with updating its strategic plan. The plan guides priorities for autism research, services and supports and is relied on by both federal agencies and private organizations.

With work underway on the latest iteration, committee leaders have signaled their intention to shift the type of language that’s included. The updates were incorporated in response to feedback in a survey of IACC members earlier this year.

“There were some comments on language considerations, which we summarized as moving away from deficits-based language and towards more neutral, strengths-based, inclusive language while also balancing the importance of maintaining accuracy when referring to issues that may be scientific, medical or clinical in nature,” Susan Daniels, executive secretary of IACC, said during the committee’s spring meeting.

Sam Crane, legal director at the Quality Trust for Individuals with Disabilities and a member of the IACC, said that the current draft the committee is considering contains “significant changes,” many of which are “for the purpose of reducing stigma and reflecting the community’s prioritization of well-being over a ‘cure.'” She noted that the changes are in line with efforts to refocus research on improving quality of life.

Now, however, some advocates are not on board. The National Council on Severe Autism recently wrote to the IACC criticizing the plan.

“There is nothing inclusive about neutral or strengths-based language that specifically excludes or denies realities of autism, particularly severe autism,” the group wrote. “While the IACC neutralizes language about autism, families on the other hand rely on medical necessity, and the neural and behavioral impairments, disorders and pathologies underlying it, to attain desperately needed supports. For most of us in the real world, impairments, dysfunctions, deficits, disorders, dependency, and not ‘strengths,’ define the daily experience of autism.”

The group argues that altering the language around autism limits the ability to address significant issues like self-injurious behaviors, the rise in autism prevalence and the need for services and housing.

“I actually think that language is a central concern of these debates, as it determines how policy makers and the public more broadly perceive autism,” said Amy Lutz, vice president of the National Council on Severe Autism, who spoke out at the IACC’s October meeting against the move toward neutral language. “If neurodiversity advocates are successful in this new drive to purge discourse of words like ‘severe,’ ‘challenging,’ ‘disorder,’ ‘risk,’ etc., then they will also control the kinds of research that are funded and the supports and services that are provided to individuals like our kids.”

Officials with the National Council on Severe Autism said leaders of several autism groups and some prominent researchers have privately applauded their efforts to speak up, but have not come out publicly against the IACC move to neutral language.

Alycia Halladay, chief science officer at the Autism Science Foundation and a member of the IACC, said she would like to see “more flexibility in the terminology being used” in the draft of the 2021-2022 strategic plan. But she said that she appreciated the IACC staff’s efforts to integrate a broad range of perspectives given that this is a “very contentious issue.”

The IACC is supposed to update its strategic plan every year in accordance with the Autism CARES Act, but the last update was in 2019. Subsequently, the committee did not convene for two years after all of the members’ terms expired and there was a delay in appointing a new committee.

Daniels, the IACC executive secretary, said the committee is aiming to vote on finalizing a new version of the strategic plan at its next meeting in January.