As autism treatment spending rises, controversial therapy is the main option for Minnesota families

For Fatima Molas’ son, years of a controversial autism treatment helped him with daily skills, like potty training. But, she said, the therapy called applied behavior analysis (ABA) is not the right fit for every kid.

Joyner Emerick’s family decided early on the intervention was not something they wanted for their son, in part because they didn’t want him to look less autistic.

“This is just a typical form of human diversity, and do we really want to take people who have been born a certain way with a particular identity and put them into therapy to suppress that identity?” said Emerick, a Minneapolis school board member who is autistic.

The decades-old practice known as ABA, used to help people who are autistic change behaviors and develop skills, has drawn criticism in recent years from some autistic people and from some parents who worry the repetitive practice could be harmful.

Still, it is the overwhelming option for early intervention available to Minnesota families and the basis of many services available for children with autism spectrum disorder across the country.

The 10 autism service providers receiving the most Medicaid dollars through the state’s Early Intensive Developmental and Behavioral Intervention benefit almost all list ABA services on their websites. One provider did not have a website and did not respond to a call Wednesday.

“The only thing you hear is ABA, ABA, ABA. Again, I have benefited from ABA, don’t get me wrong,” said Molas, who co-founded the Multicultural Autism Action Network. “It’s just that there needs to be more options than the ABA, and we have to tailor the services based on what the child’s needs are.”

Use of those Medicaid-funded autism benefits has grown exponentially and recently came under scrutiny for potential fraud. The state Department of Human Services (DHS) said it has 15 active investigations into autism service providers getting money through the benefit and 10 closed investigations.

The DHS does not have data on how much of the early intervention benefit money is being used for ABA compared to other types of treatment or how many children are receiving that specific service, a spokeswoman said. Unlike some other states, Minnesota has other treatment types funded through the benefit, but ABA is the most popular, said Natasha Merz, the DHS’s assistant commissioner of Aging and Disability Services.

What ABA looks like in practice can vary depending on the child’s needs and where they go for treatment.

Providers generally described using positive reinforcements, like watching a YouTube video or navigating an obstacle course, to take incremental steps to build communication and other skills.

The approach is “all about positive reinforcement,” said Eric Larsson, executive director of Clinical Services at the Lovaas Institute Midwest. “If the person you are working with is excited to learn from you because they are getting the things they want and it’s fun ... they start paying attention to what you are doing instead of sitting in the corner.”

However, in decades past, the practice used punishment to shape behavior.

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.”

The field continues to change, said Odessa Luna, president of the professional group Minnesota Northland Association for Behavior Analysis. Luna, who teaches at St. Cloud State University, said the field is shifting away from trying to eliminate behaviors like repetitive finger and arm movements or rocking.

“These are actually behaviors that provide some kind of self-soothing or they are an indicator that something’s not right,” she said. “We have evolved as a discipline, but I also think society has become a lot more accepting of folks that present differently.”

Oversight is critical to ensure providers evolve and meet the best standards to help kids, advocates said.

The services provided under the state’s early intervention benefit need to be delivered or supervised by a clinician with appropriate licensure, Merz said. However, the providers themselves don’t need a license, and there are no regular inspections of the organizations or individuals doing the work.

State lawmakers recently voted to start licensing behavior analysts, and Merz noted that the DHS is studying whether to license services funded through the early intervention benefit.

She also stressed that the state’s system is set up so the family or person getting services is driving the goals of treatment and determining whether to use ABA or other methods to meet them.

However, Jules Edwards, a disability justice advocate and co-founder of the Minnesota Autistic Alliance, said, “There’s a lot of coercion and scare tactics, and it frightens parents into thinking that they have to do ABA or else.”

ABA was an “automatic no” when her child was diagnosed with autism, she said. She also noted her friends’ children recently had negative experiences with it.

Edwards echoed other parents who said they wish there were more people offering different types of autism interventions in Minnesota. But, as is often the case in disability services, she said, “There’s not enough providers.”