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ASPartOfMe
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01 Sep 2022, 9:35 am

Applied behavior analysis and autism: Flawed application of a proven science

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I had been working in applied behavior analysis (ABA) for almost a decade when my own daughter was diagnosed with autism at age 4. At that point, she was having multiple meltdowns a day, turning over furniture, hurting herself and acting aggressively toward her younger brother. She was struggling to communicate, and my husband and I felt like we were failing her as parents. I had an infant at the time, was pregnant with my third, and was feeling desperate for help. ABA seemed the obvious next step for our daughter, and our family. I knew I should not analyze her behavior myself, no matter my training: I needed an objective assessment from someone outside our circle.

In exploring the field as a parent, I came across a recommendation to join the group “Ask Me, I’m Autistic” on Facebook. I filled out the membership questions, explaining that I’m a board-certified behavior analyst (BCBA) and parent, and that I was hoping to learn more from the autistic community. An administrator of the group messaged me to say that the group does not allow behavior analysts in unless they are prepared to consider leaving the field of ABA. I was told members would be uncomfortable with my presence in the group, given my profession. I found other pockets of criticism online, where ABA was described as abusive and traumatizing. This was not the field I knew and loved, and not the way I believed I was practicing and teaching others to practice.

I felt confused and defensive. Yet I continued my search for ABA services for my daughter. I reached out to multiple agencies in my area. Some had long waitlists because of staffing issues. Some didn’t take my insurance. Others had available slots only in the middle of the day, when our daughter was in preschool and my husband and I were at work. I was disheartened by the lack of compassion in these responses, and some agencies never replied at all.

We finally found a spot at one of the biggest ABA service providers in the country. We felt we needed only in-home support, but their model required our daughter to come into the clinic for the bulk of her services. We gave in, thinking something was better than nothing. Still, getting to actual services was painfully slow: We started the paperwork and insurance authorizations in November, and our first day of services was the following May.

Our experience did not improve from there. Nobody asked what had led us to seek services. No one asked what our goals were. Instead, my daughter was assessed on a series of generic skills, and she was scheduled to work on tasks we didn’t find important, such as matching and labeling. We felt more time was spent checking the required boxes for insurance reimbursement than on crafting services individualized for our daughter and family. Months into receiving services — and a full nine months after starting to work with the agency — we still did not have a plan for the behaviors we were most concerned about.

The agency also seemed to be struggling with staffing. When a new behavior technician showed up at my home, I asked her how long she had been in the field. She told me it was her first day.

I stumbled upon the field of ABA accidentally, when I took an introductory course as an undergraduate student. I was paired with the family of a 3-year-old receiving ABA services and watched in amazement as he learned new skills.

The services my family received did not align with what I knew ABA could do. The very nature of ABA requires that it is individualized. It is meant to be applied toward meaningful goals for the individual and family. We were receiving standardized services based off assessments we completed on a computer. By now, this was enough for me to doubt the profession I had practiced for 10 years, and we pulled our daughter from the agency.

I could not believe, though, that there was something inherently wrong with this natural science. The science of behavior is welcomed in myriad other fields.

I began to think about applying ABA principles to my daughter’s environment based on my own training. We started using it in our parenting and embedded support strategies into her school day. We focused on her communication skills. Over time, her fear of school decreased, her aggression greatly subsided, and she was happier than she had been in years.

Along the way, I rediscovered my love for applied behavior analysis as a science. Yet it cannot be denied that something is wrong with its current application, and I’m not the only one to realize this. A colleague and I formed the Coalition for the Reform of Applied Behavior Analysis, and it gained hundreds of members within weeks. Collectively, we recognize that we must change the application of our science so that it is client-centered, neurodiversity-affirming and equitable. Client services should be focused on the individual instead of using cookie-cutter approaches to save money. Services should be delivered to clients in daycares, schools and homes, rather than forcing clients to spend hours in clinics. Services need to be reimbursed, certainly, but assessments and support plans should not be written solely to appease insurance companies. Those in the field need constant training and continuing education, and we must improve supervision of both behavior technicians and early-career BCBAs. And, for certain, we need to listen to autistic voices and honestly hear their criticism.

I still have days when I wonder if I should just leave the field. It can be exhausting to fight for reform within the field while advocating in support of the science to the critics outside of it. I stay because I believe it’s worth the fight.


Parents and clinicians say private equity’s profit fixation is short-changing kids with autism
Quote:
When a new person comes into his living room, a giggly “E” smiles and passes a balloon her way. His fifth birthday was a few weeks ago, and these half-filled remnants still loiter around his suburban house. Suddenly, E darts upstairs for a moment alone, his wispy brown hair bouncing with each step.

There, in his room, is a corner with a tiny armchair, a short bookshelf, and a stuffed octopus. It’s where he goes to calm down when scared or overwhelmed.

A few months ago, E’s sudden trips upstairs were much more common. Then, he was getting a popular form of autism therapy called applied behavior analysis. It’s designed to cut down on unwanted behaviors and improve language and social skills. But E’s mom said it caused his anxiety to skyrocket. For the first time, he started having meltdowns. E’s provider told his mom, Laura Zambrano, he was being manipulative, and said they were moving into a phase of treatment that would cause even more meltdowns. She warned Zambrano it might be hard to watch.

Those weren’t the only red flags the Zambranos encountered with the autism therapy, more commonly referred to as ABA. More than three dozen other families, clinicians, and experts interviewed by STAT outlined still more. Some said the providers, which are meant to deliver highly individualized treatment plans for each patient, instead used cookie-cutter templates. Many parents described being hounded to bring their kids to more and more therapy. Nearly all who spoke with STAT, including the Zambranos, described a severe provider shortage and constant turnover among burned-out clinicians, depriving kids with autism of the thing they need most: consistency.

It appears that ABA, broadly, is in crisis, too. Providers across the country have been billing insurers for more therapy than they could possibly deliver, or even double billing, according to lawsuits and audits in multiple states. One single person in Nevada, for example, asked to be paid for providing 65 hours of therapy in one day — an obviously impossible feat. Now, a federal watchdog agency has launched a national investigation into the industry’s practices.

”It’s just mind-boggling to me that this is the option that parents are left with,” Zambrano said. “Kids are being so ill-served.”

Families and clinicians who once believed fully in the promise of ABA say the financial investors’ fixation on profit has degraded the quality of services kids receive, turning it into the equivalent of fast food therapy. They’ve grown disillusioned with the industry, they told STAT. Some are now questioning whether the therapy is helpful at all, or even harmful, especially after a recent Fortune article detailed an allegation of physical abuse at one chain.

“Bad ABA can at worst traumatize and injure a child,” said Michele Trivedi, who manages The Arc of Indiana’s Insurance Advocacy Resource Center and whose daughter has autism. “At best, you’ve wasted that child’s time, you’ve wasted that family’s time, you’ve wasted a lot of their money because they’re paying copays. You’ve wasted the health insurer’s money, taxpayers’ money. This is not a victimless crime.”

ABA providers, for their part, rejected assertions that they’re failing to provide individualized treatment plans. To the contrary, they said tailoring services to each client is their top priority. They also said financial investors don’t dictate how many hours they prescribe.

Some companies said they’re struggling with staff shortages and high inflation, and are trying to get health insurers to pay more for services.

You can’t just walk in and hand people a book and say, ‘This is what we’re doing this week,’ because you’re going to totally miss the point of what this individual child and the parents need,” said Eric Larsson, executive director of clinical services for the Lovaas Institute Midwest, a private ABA provider that’s not private-equity-owned.

But several people working in the industry say that private equity, in an effort to save money on time-intensive assessments, often uses “cookie cutter” treatment plans that are at times simply copy-pasted from one client to the next, which they said runs counter to how the therapy is intended to work.

One board-certified behavior analyst — the master’s-level clinicians who supervise ABA technicians — said she was shocked when she started working at Autism Learning Partners in Texas. It was very different from her experience running a small, independent ABA firm there that shut down during the pandemic. She said she felt like a “billing machine, trying to make as much money for private equity as possible.”

There, she noticed every child’s plan called for the same number of hours. The treatment goals were remarkably similar.

“I started to push back and say, ‘I’m not comfortable with these treatment plans because I haven’t observed these deficits,’” recalled the analyst, who spoke on the condition of anonymity because she still works in the industry. “I’m supposed to be delivering medically necessary services. I can’t say with confidence that this is medically necessary. And it looks a lot like that guy that came in last week from the same assessor.” (Some chains have clinicians who only perform assessments, a controversial practice in the field.)

Jennifer Hinostroza, a parent of a child with autism in the Los Angeles area, described a similar experience. On a video call in 2021, an aggressively sales-focused clinician with the Center for Autism and Related Disorders outlined an ambitious, 40-hour-per week treatment plan for her son — before speaking with him.

Her son’s psychologist had recommended just 15 hours per week of ABA.

“They were abusing the fact that these children need help and they’re trying to suck out money from these parents who need help,” she said.

For their part, private-equity-owned ABA companies pushed back on allegations that they’re not individualizing their treatment plans.

Elissa Couron and her husband loved their Vancouver, Wash., ABA provider when they first sought therapy for their son “T,” back in summer 2020. T’s main provider was personable. She made it clear that the number of hours of ABA she prescribed was only a recommendation. The family could do what was right for them.

“I really felt like I was getting the support I needed,” Couron said.

At the time, her clinic was in the process of transitioning to a new owner, the private-equity-backed ABA chain Kadiant. T’s clinician left, and his replacement didn’t communicate as much and didn’t involve her in the training as often.

From there, it got worse. The new clinician reassessed T, whose full name is being withheld to protect his identity, and insisted he needed 30 hours per week, more than double his regimen at the time. Couron balked. Not only was she working, but T was also in physical therapy, speech therapy, occupational therapy, and day care. She told the provider that 15 hours was her maximum.

“I felt like she was hustling me for more hours,” Couron said. The long back-and-forth eroded Couron’s trust in T’s care team, and in ABA more broadly.

“ABA shouldn’t be a burden, it should be an asset,” she said. A representative with Kadiant, which is now undergoing another ownership transition, declined to comment.

The conversation about hours is complicated by the fact that ABA was founded on the principle of intensive intervention beginning as early as possible. ABA pioneer Ole Ivar Lovaas touted 40 hours per week as the optimal dose based on his 1987 study, and some practitioners still insist on that. Recent literature reviews, however, have cast doubt on the evidence supporting that many hours. A 2018 Cochrane review of ABA found only limited evidence that that much therapy might be effective for some children with autism.

Larsson, of the Lovaas Institute Midwest, said parents sometimes think his practice is hounding them to accept more hours, but it’s simply what some kids need to have the best shot at one day living independently. Parents aren’t always ready for that, and will ask for half a program or a summer program, but his organization is focused on intensive therapy.

“Kids need around-the-clock treatment if they’re going to recover to the maximal extent,” Larsson said. “They need a lot of help just to get a leg up on their future. With an intensive program you can do that.”

Burnout is a common experience among ABA providers, some of whom said they left large chains for smaller companies or quit the industry altogether. The work can be grueling. Not only are the hours long, but clients can have challenging behaviors. Employees say they’re not treated well by the large chains, often denied lunch breaks, for example. The same allegations came up in a lawsuit in California.

Not only that, technicians are low-paid paraprofessionals with little training, a population that tends to see higher turnover. Becoming a technician requires a high school diploma, being 18 years old, completing 40 hours of training and passing a competency test.

Cycling through providers each month is bad for kids with autism, who need consistency and time to build rapport with new people, many clinicians and parents agreed.

To make a profit, private equity firms typically cut costs on the staffing side, said Trivedi, of The Arc of Indiana. That means providing less training, cutting down on technician supervision, hiring less experienced people, and not performing rigorous background checks. Parents, because they’re not clinicians, typically aren’t trained to recognize when ABA is going poorly, she said.

Some working in the field said the issues of standardized treatment plans, maximizing hours, staff shortages, and billing irregularities exist in companies of all ownership types, not just those with private equity backing.

Others argue that private equity has benefited the industry.

The allegations come from nearly every corner of the country, and involve both providers with private equity backing and those without.

Florida ABA providers, too, bill for those “impossible days,” or send bills to the state’s Medicaid program that suggest they provided more than 40 hours of therapy in a week, Medicaid’s limit — impossible weeks. Sometimes providers send bills for so many consecutive days of service that it would mean they never took a break for weekends, holidays, or sick days. One estimate suggested the fraud could have cost state taxpayers hundreds of millions of dollars in Broward and Miami-Dade counties alone.

Now, it’s gotten so bad the federal government is stepping in. The Health and Human Services Department’s Office of Inspector General is working on a sweeping audit of Medicaid claims for ABA. The final report is due this year.

Florida has been taking some steps to root out problematic providers — of which there are many. In fiscal year 2019 alone, Florida’s health department kicked 645 ABA providers off Medicaid for suspected fraud and abuse – three-quarters of all provider terminations that year.


It’s unclear whether private equity ownership correlates with more billing fraud, because few of the audits distinguish between ABA firms’ ownership types.

“It’s not that you have a rash of providers who say, ‘We’re trying to steal money from these funding sources,’ it’s more that providers struggle to keep up with the documentation requirements imposed and they’re messing up,” said Erick Dubuque, vice president of quality for the Council of Autism Service Providers, a nonprofit association that supports the autism provider community.

Private insurers have their own policies, but it’s worth noting that some government programs deny claims where two individuals bill separately for one ABA session.

bolding=mine

Two questions here, is the industry so rotten to the core that it is beyond saving, and even if it can be meaningfully reformed can ABA actually be a good thing? I doubt the industry can be saved and even if it can I doubt ABA overall can be good.

ABA was born on the assumption that not only was Autism was bad but it was bad in the way people care about most socialization. A person is a criminal that is too bad because he is really a nice guy when you meet him. Autistic, can’t socialize, not human, will never achieve the dreams you have for them etc, etc. This was how autism was presented for decades. That view caused the desperation and willingness to try anything that led to ABA monopolizing treatments leading to the nightmare described in the second article. None of the articles mentioned it but it must be mentioned Autism Speaks especially between 2005 and 2015 was key in bringing this attitude about autism to the masses. They are still a key lobbying organization for ABA.

Well now it has changed but I suspect deep down the old founding attitudes linger. That is one reason I think even if the industry is somehow still reparable and all the inclusive talk I doubt ABA can be an overall force for good.

It is what it is now what?. Reform knowing it is just a band aid is maddeningly frustrating but still worth it. Significant reforms in ABA has been a good thing more would better even if the end result can never be what it should be. I understand and share the Ask Autistic Facebook groups doubts about any dialogue with ABA’rs can be meaningful while just traumatizing members. This is not about personal feelings it is about helping our fellow Autistics. I would suggest that if there is a way to let the ABA’rs ask questions of members willing to engage with them make it happen.


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carlos55
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01 Sep 2022, 12:55 pm

Quote:
Autistic, can’t socialize, not human, will never achieve the dreams you have for them etc, etc.


Autism is one condition but an umbrella term so for some more disabled autistic kids the parents will be quite rightly wanting to treat their autism.

Those with milder symptoms are likely to be diagnosed later so will have more say in what they want

I wouldn’t mind if ND activists hated ABA because it was of no benefit rather they hate it because they are against treating or changing autism because they see it as an identity


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01 Sep 2022, 1:44 pm

I didn't do ABA. I had a speech therapist that did floor time and I went to a developmental preschool. That was back in 1979 to 1980.


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magz
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01 Sep 2022, 2:25 pm

From what I know:
ABA is just a method of training.
It can be employed for teaching something useful and that's okay.
The problem is, it's commonly used with a goal of making one "indistinguishable from their peers" - which means forcing one to supress expression their needs and feelings that don't fit the criterium of "normality". And that "gives effect" short term but damages mental health long term.

Using ABA with limited and not harmful goals (i.e. to aquire some self-care skills) is okay.
Using any method to force one to supress their real needs all the time - is harmful.


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01 Sep 2022, 2:38 pm

ABA comes in many shapes and sizes.

There was a famous study done by Ivor Lovaas back in the 1980s. It revealed that his method of ABA, known as "Discrete Trial Training," "worked," in that most of the study participants were able to be "mainstreamed," able to be perceived as "normal." However, years later, it was found that many of the participants had various psychological problems. A member of the Lovaas Study even made some posts on WrongPlanet back about 2014-2015.

My mother used what, in retrospect, was ABA-type methodology when I was a little kid in the mid 1960s. I don't believe I received any ABA from a psychologist or other type of therapist. Instead, I was placed in a "brain-injured" nursery school; then went to first grade in a "special class" within a public school; then spent most of my remaining elementary school years in a "special school" for kids with all sorts of "problems."



carlos55
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01 Sep 2022, 4:03 pm

magz wrote:
From what I know:
ABA is just a method of training.
It can be employed for teaching something useful and that's okay.
The problem is, it's commonly used with a goal of making one "indistinguishable from their peers" - which means forcing one to supress expression their needs and feelings that don't fit the criterium of "normality". And that "gives effect" short term but damages mental health long term.

Using ABA with limited and not harmful goals (i.e. to aquire some self-care skills) is okay.
Using any method to force one to supress their real needs all the time - is harmful.


Yes its just skill training nothing more sometimes it works for the individual skill other times not

Quote:
Using any method to force one to supress their real needs all the time - is harmful.


not sure what you mean by this give an example


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magz
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02 Sep 2022, 1:12 am

carlos55 wrote:
not sure what you mean by this give an example

Things like stop any stimming or make the "proper" amount of eye contact, not react to overstimulation when NTs aren't overstimulated (I have very low threshold for pain from noise so this one is from my personal experience).

Generally, ignore you're in pain and behave normal. That's how ABA is often employed for those "high functioning".

At least two currently inactive WP members "deeper" on the spectrum (more seriously disabled) reported much better experiences with ABA as for them it was about learning basic self care and communication skills - that's a correct application of the method, I think.


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02 Sep 2022, 6:58 am

magz wrote:
carlos55 wrote:
not sure what you mean by this give an example

Things like stop any stimming or make the "proper" amount of eye contact, not react to overstimulation when NTs aren't overstimulated (I have very low threshold for pain from noise so this one is from my personal experience).

Generally, ignore you're in pain and behave normal. That's how ABA is often employed for those "high functioning".

At least two currently inactive WP members "deeper" on the spectrum (more seriously disabled) reported much better experiences with ABA as for them it was about learning basic self care and communication skills - that's a correct application of the method, I think.


I don’t think anyone should ignore being in pain

My stimming gets in the way of other things I hate it and would gladly rid of it. In fact it has potentially put me in danger when driving or being picked on

As for eye contact it’s probably a skill like anything else mine varies ok on some days very poor on others.

Again something I would like to improve on. Though don’t think ABA would help rather a drug or biological therapy in the future.

Alcohol helps but I’m not so dumb to go there and rely on that


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03 Sep 2022, 12:42 am

These places do ABA because insurance/Medicaid pay for it. That's where the money is. Until something else comes along that insurance covers, that's what kids will get.