Content Warning: ABA, Unwarranted accusations of Medical Neglect
Reader Note: Therapist Neurodiversity Collective routinely receives emails from parents whose physicians have made accusations of Medical Neglect for refusing ABA services for their Autistic child.
I was wondering if I could speak with someone on how to deal with being court-ordered by the family court system to enroll a child in intensive ABA therapy?”
Autism and Medical Neglect
By Dr. Sarah Zate, MD
As if families with autistic children don’t have enough going on, we’re now talking about accusations of child neglect if parents disagree with an ABA referral. As a pediatrician, this is somewhat amusing, because I tend to think of the mothers of my autistic patients as incredibly engaged. The idea of medical neglect seems so foreign. And yet, here we are. And not by accident. Some wonderful families have been put through the Child Protective Services machine simply for declining to participate in ABA.
I’m not here to vilify anyone. Physicians are generally good people who have dedicated their lives to healing others. And to be honest, we often know a lot about a lot of things and have become quite comfortable with people doing what we say. So, parents who don’t follow our advice are often seen as a barrier. When we’re talking about medication compliance for asthma, for example, failure to follow a treatment plan can literally kill a child. In that case, sometimes CPS involvement is indicated.
But no matter the treatment in question, it’s essential that physicians consistently pursue a rigorous diagnosis of child neglect before involving authorities, and that we do so objectively and in an evidence-based fashion. I’m sad to say that some of us have fallen short in this responsibility, particularly as it applies to neurodivergent and other disabled children.
Medical neglect is defined by the American Academy of Pediatrics as “. . . either failure to heed obvious signs of serious illness or failure to follow a physician’s instructions once medical advice has been sought.”
More specifically, most providers agree that medical neglect requires that 3 essential criteria are met:
- The child is harmed or is at risk for harm because of lack of health care,
- The recommended health care offers a significant net benefit to the child,
- The anticipated benefit of the treatment is significantly greater than its morbidity.
This is an all-or-nothing diagnosis. If all 3 criteria are met, a child is being medically neglected. But if even one is not met, a parent is not neglecting to meet their child’s medical needs, no matter how I, the physician, feel about the choice. When I consider whether a parent’s actions are neglectful, I walk through each of these steps, reviewing the medical literature, and considering as many points-of-view as possible. So, I’ll walk you along with me.
At Risk of Harm
For me, the central question is whether an autistic child is at risk of harm if ABA is not provided by a parent. Harm is an interesting choice of words in this guideline. The medical community defines harm as impairment of physical or mental health. Rewriting the question, we are asking whether an autistic child is at risk of physical or mental impairment if ABA is not provided. We’ll come back to that in a bit.
Significant Net Benefit
In order to diagnose child neglect, the treatment in question needs to provide significant net benefit to the child. So what about ABA? Autism Speaks describes the benefits of ABA, including “gains in intellectual functioning, language development, daily living skills, and social functioning.” But do these benefits qualify as “significant net benefit”? We’ll break this down.
First, let’s consider intellectual functioning. This is complicated, because IQ is a difficult thing to measure in any population, and most testing methods rely on verbal response. In studies of young children, IQ is often measured with a test called the MSEL or another similar tool. The MSEL breaks down IQ into several different domains, some verbal and some nonverbal. Obviously, this test is designed for children for speak, and studies of ABA often apply it to children who don’t. In a group that, by definition, struggles with verbal communication, any measure of IQ is of questionable validity. But, let’s pretend that IQ measurement is valid, just for the purpose of this discussion.
In the studies cited to prove this IQ increase, there is a real increase in IQ points in kids who attend ABA. That is absolutely true. The flaw in the claim is that most of the IQ points gained by the children in ABA are in the receptive and expressive [spoken] language portions. Overall, it’s a small increase, and we don’t know if the effect is maintained once treatment is stopped. And, studies don’t show that ABA converts autistic children to “normal” intellectual functioning. It might increase scores a little, but it’s not clear that makes a big difference in the life of the child.
Then there’s language function. As I said before, ABA can increase measurable spoken communication a little, while the child is receiving services. After services end, nobody knows if that effect stays or if children return to normal. It’s not overwhelming evidence of benefit. I also should point out that this “benefit” is focused on spoken language. But there are lots of ways to communicate. The singular identification of speech as effective communication is narrow, to say the least, and ignores the life experience of the millions of humans who don’t communicate with the spoken word. Since we know it’s possible to live a happy, productive life without speaking, the net benefit of this gain is questionable.
Next, let’s decode the terms “daily living skills” and “social functioning.” Daily living skills are not necessarily the same thing as “activities of daily living,” which include tasks like tooth-brushing and making a meal – things that all adults would ideally be able to do. “Daily living skills” in ABA research appear to focus around the ability to follow directions and complete directed tasks. This is very similar to “social functioning”, which includes imitation of others and social competence.
In other words, ABA makes kids more pleasant and easier to manage. I’m sure this is a great benefit to teachers and parents, but the benefit to the child is not as clear. There’s no evidence that these pleasant and manageable kids grow up happier or more capable than any other autistic child.
More recent evidence-based medicine is not supportive of the gains touted by Autism Speaks. Studies conducted by the US Department of Defense have shown little or no benefit from ABA therapy. They concluded that positive changes after ABA therapy are small and not significant. As a pediatrician, I would be hard-pressed to argue that ABA therapy offers significant benefits to an autistic child.
Benefit Over Harm
What we’re really asking is whether ABA is more likely to do good things or bad things for an autistic child. Since we’ve already talked about benefit, let’s talk about risk. And there is risk, both real and theoretical.
There are some theoretical risks of ABA therapy that need to be discussed. ABA therapy is focused on behavior modification, with little consideration for the stimulus causing the child’s behavior.
Particularly for those who struggle for competency in the spoken word, behavior is a primary means of communication. To extinguish that behavior is essentially asking a child to stop communicating their needs. This is inappropriate at best, and abusive at worst.
More problematic for me is the fact that ABA creates a dynamic in which the therapist has significant control and power over the autistic child. Rather that traveling together through the therapy journey, the child’s actions are directed and controlled by the therapist. Compliance with instructions is rewarded. Undesired behaviors are extinguished. Children are usually offered rewards for compliance, and high-value rewards are specifically identified for the purpose of gaining compliance. A therapist might use a child’s favorite toy or snack as a reward for doing as they are instructed. And so, the child learns that it is acceptable for another person to withhold items to gain compliance. It is extremely difficult for me to distinguish this relationship dynamic from that of an abusive spouse, who may withhold money or transportation in order to manipulate the behavior of the other spouse. Teaching a child that such quid pro quo relationships are normal is exceptionally dangerous. When we normalize grooming, we set our children up for abuse by others in the future.
Still, the best people to guide us on the risks of ABA are those who have experienced it, and those are our autistic adult advocates. And, in many cases, their reviews are not positive. Individual advocates have reported anxiety, depression, PTSD, feelings of disconnectedness, low self-esteem, and many other adverse effects. If ABA were a medication, the number of adverse events and effects reported after treatment would result in a safety evaluation by the Food and Drug Administration. But no such safety evaluation has ever been conducted on ABA. Performing a treatment on a child that has no safety data probably sounds unsafe to most people, and it is.
Risk of Harm, Revisited
So, back to the first criteria. Is a child at risk of mental or physical impairment because a parent chooses to decline ABA therapy for a child?
With little or no proven benefit, the likelihood of developing impairment because ABA was not provided is essentially zero.
Is This Neglect?
In considering the definition of child neglect, the decision to decline ABA therapy fails to meet diagnostic criteria entirely. It’s a failure of epic proportions, meeting none of the three necessary criteria for diagnosis. It’s entirely clear to me that ABA therapy has negligible benefit to an autistic child and a significant risk of harm or worsening of symptoms.
I could argue that subjecting a child to ABA is an abusive act in its own right. Protecting a child from abuse, just because a doctor recommends it, is not neglect. It’s safe, healthy parenting.
About the Author: Dr. Sarah Zate, MD is a pediatrician and Assistant Professor of Pediatrics at Texas Tech University Health Sciences Center El Paso in El Paso Texas. She is board-certified in General Pediatrics and Child Abuse Pediatrics. She provides primary care for autistic and neurodivergent children as well as foster children and other vulnerable populations. She is also a wife and mother of 3 children, ages 5, 12, and 14.
Dr. Sarah Zate, MD is currently conducting a study on the parents of autistic children and is seeking subjects. You may find more information here: https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_aguHSkt1qG7bEah
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