In The Politics of Autism, I write:
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.
In recent years, some autistic adults in the United States and around the world who experienced the practice as children have described it as traumatic and said they should not be forced to behave like their neurotypical peers. And a U.S. Department of Defense study published in 2020 examined outcomes for children with autism who received ABA therapy and raised concerns that children were not seeing significant improvement.
There is also national scrutiny of billing practices in the field. The U.S. Department of Health and Human Services Office of Inspector General has been auditing Medicaid claims for ABA for children diagnosed with autism. The office’s website says, “In the past few years, some Federal and State agencies have identified questionable billing patterns by some ABA providers as well as Federal and State payments to providers for unallowable services.”
A spokesperson said a report is expected later this fall and declined to comment on which states are being reviewed.
Hundreds of millions in Medicaid dollars have gone to autism service providers through Minnesota’s early intervention benefit since 2018. Some of the biggest providers, which offer ABA, have received tens of millions of dollars.
ABA remains the “gold standard, or the best interventions we have right now,” said Jessica Simacek with the Institute on Community Integration at the University of Minnesota. The American Academy of Pediatrics states most evidence-based treatment models for children with autism are based on the principles of ABA.
The challenge is trying to affirm neurodiversity while addressing situations where a child exhibits dangerous behaviors, like running away, self-injury or aggression, Simacek said. She doesn’t want parents to be afraid to come forward and say, “Though I celebrate my child, these are areas we need help with.”
