Sunday, June 6, 2021

The ABA autism industry needs to be abolished, but please stop with the "abuse and neglect" language

I recently wrote about how the ABA autism industry needs to be abolished, while at the same time we need to take care to keep an intersectional view and recognize that many families do not have the privilege to decline recommended services.

Another pattern I am seeing in ABA abolition advocacy that lacks intersectionality is the practice of referring to ABA as "abuse and neglect." Now, I absolutely understand from a clinical standpoint why someone would view these practices this way. There are very much practices in the ABA autism industry that are demonstrated to cause long-lasting harm. There is much documentation of therapists engaging in the same practices that have in other separate instances resulted in an abuse/neglect finding when carried out by various parents unrelated to ABA (force-feeding, extended seclusion/ignoring, withholding of food/restroom, etc.) There is no question that this industry engages in harmful practices.

The problem comes when we refer to the entire industry as abusive while failing to understand the child welfare system and the very real and serious risks it poses to poorer families, browner families, and disabled parents. 

As a clinician, I recognize that there exists a wide range of parenting and caregiving practices that could make sense to call abusive or neglectful from a clinical standpoint, but which do not rise to the level of abuse or neglect in which legal intervention would be warranted. (For the purposes of this discussion, I am not currently going to discuss CPS overreach and the widespread problems with non-abusive families being involved with CPS for reasons of racism and poverty, nor will I discuss movements to abolish the current system in favor of proactive and collaborative community-led programming. I am referring here to situations in which legal intervention is truly needed in order to ensure safety of a child.) 

When I am in the role of working with someone 18 or over who discusses having been abused or neglected as a child, my response is to listen and allow the individual to control this narrative. It does not generally matter at this point what language the person is using; it matters what their experience was.

However, when I am working in a role involving minor children, or in policy or other discussions involving minor children, this language absolutely does matter. It is highly problematic to refer to ineffective or questionable parenting as abuse and neglect when there is currently a minor child involved, as this can result in unnecessary and traumatic child welfare involvement. It has been well demonstrated that the child welfare system is rife with patterns of racism and classism at every level (reporting, screening, investigating, supporting, removal, and reunification), and is has been well demonstrated that any contact with this system is highly traumatic and destabilizing for children and parents. It has also been well demonstrated that "better safe than sorry" practices are harmful both to the non-abusive families as well as to victimized children who are not able to receive help because resources are misallocated in a system in which only a single-digit percentage of reports turn out to be abuse (and even fewer of those would hold up in court as such). 

Another thing to understand about the child welfare system is how allegations are documented and screened. In order to screen in a situation for investigation, an "alleged perpetrator" must be named. For anyone who is still on the fence about "better safe than sorry" or "just to make sure services are in place" usage of this system, what this means is that in order to contact the child welfare system with a concern that a child/family "might be in need of further services," a reporter needs to list an alleged perpetrator, who must be someone considered a caregiver for the child. If the reporter states they are not alleging abuse or neglect, or states they are not blaming anyone, the screener nonetheless takes the report, alleging (usually) neglect, and lists the child's parent as the alleged perpetrator. If anyone still thinks this is a system "to make sure services are in place," please know there is no such option for doing this, because that is not what the system is legally tasked with doing. There are ample voluntary community-led programs that put services in place. 

I have sat in meetings as a clinician in which a DCF investigator explains to the family "no one is accusing you of anything; we are just wanting to make sure appropriate services are in place." In the meetings in which the family was fortunate enough to have an attorney (unless the family can private-pay an attorney, in Massachusetts this generally means only families where a child in the family already is in DCF custody), the attorney has informed the investigator that it is problematic if that is how they are viewing the situation, as the legal role of the investigator is to determine whether a caregiver has abused or neglected the child, not "whether appropriate services are in place." (A family has the legal right to have their child involved in considerably fewer services than most of us would agree are ideal, as long as their inaction is not causing or highly likely to cause the child significant lifelong harm.) Also, the report having been screened in requires that DCF has alleged abuse or neglect with the caregiver listed as alleged perpetrator, so someone is being accused of something. 

So, back to how this relates to ABA. More and more, I am seeing well-meaning folks in their ABA abolition advocacy stating that things like behavior charts, time-outs, rewards, withholding any preferred item or activity, first-work-then-fun practices, and general participation in ABA are "abuse and neglect." Again, I get the sentiment. I am right with y'all in knowing why primarily behavioral systems of teaching and parenting are not trauma-informed and not the best choice. 

Language matters though. In the presence of a child welfare system that can do so much harm if misused or carelessly employed, we as clinicians and as members of the public need to be very cautious to not refer to anything occurring in a family (with or without the encouragement of an ABA program) as abuse or neglect, unless we truly feel legal intervention is needed for the safety of the child. I have a real problem with sentiments such as that "withholding any preferred item or activity is abuse." While I fully agree it shouldn't be done by a therapist unless done in a really supportive/collaborative "hey let's see if you can get through this hard thing" type of way, I am not comfortable with a view that means a parent who takes away TV privileges until chores are done or takes away a child's electronics for whatever reason should have the legal system intervene in their family. 

For anyone who thinks this is hyperbole, and of course this isn't what is being discussed, this shows immense privilege. As someone living and working in a mixed-income, primarily Black and brown community, I can tell you it's disturbingly common for young childless white "professionals" to call in reports for anything that isn't "gentle parenting" enough for them. (FWIW, I think gentle parenting itself is great; the sanctimony around it and lack of recognizing that some families have much higher stakes than others is the issue.) A lot of these reports are supported, even though most wouldn't hold up if families could afford private attorneys to appeal them. 

The other side of this is that part of a child welfare investigation is to assess how the family disciplines their children. They are not only looking for overly harsh discipline, but also will note if a family does not seem to have a structured-enough model for discipline. While this is legally massive overreach unless a lack of limit-setting is resulting in injuries or similar, it is absolutely something that I do see occur. Families are indicated for neglect due to "lack of structure" and "lack of limit-setting" if they practice gentle/constructive discipline but lack the white social worker language and mannerisms to explain this in the way that I can. With this kind of reality hanging over the heads of poorer and browner families, I honestly would encourage families to have some sort of gentle structure for discipline that they can mention when their pediatrician asks and that their children can discuss if the topic comes up during a school discussion. White middle-class families might have the luxury of their children answering "I don't" when asked "what happens when you get in trouble?," but other families do not. Most poorer and browner families have many reasons in favor of having a protocol of infrequently asking their child to take a break in their room. 

What about viewing participation in ABA itself as abuse/neglect? Remember the "alleged perpetrator" construct? If someone reports a family for participating in ABA, and they cite the problems as things like coercion and manipulation, the parent is going to be listed as the alleged perpetrator, particularly if the therapist is never with the child without the parent in the home. The parent is still the caregiver, and the parent has authorized the services. The therapist would usually not be implicated, unless something like sexual abuse or felony-level physical abuse is alleged. And even if the therapist is listed as the alleged perpetrator (i.e., was deemed to be the caregiver in charge at the time), the parent would likely also be added as an alleged perpetrator due to "choosing unsuitable caregiver."

The bottom line here is that Black and brown parents, poorer parents, and disabled parents just do not need anything said or documented anywhere that suggests abuse or neglect is going on on their watch or via a caregiver they have selected. The stakes are just too high. 

There are a number of other constructs we can use that only apply to healthcare providers' behavior that can address this. The methods being used are often unethical, ineffective, not trauma-informed, and not-evidence-based (to my knowledge, there has been no large-scale research of ABA that compares it to the same number of hours of other types of teaching or therapy, nor that looks at acquisition of a full range of healthy and useful life skills rather than effectiveness at teaching autistics to mask autistic traits). There is emerging research that ABA causes anxiety and a poor self-concept. These are things to bring up when advocating that insurance companies stop funding it and fund better alternatives, that other professionals stop recommending it, and that the industry be shut down. But stating or suggesting that there is abuse and neglect going on in the homes of parents who might lack the privilege to decline ABA is not the way to go about this. We need to do better with our intersectionality. 

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