ABA: Harm Reduction
If you’re a parent reading about ABA, you’re undeniably getting mixed messages about its efficacy and ethics. Autistic people and their allies are saying that all ABA is horrible and abusive, and to some degree it is. ABA is abusive in the same sense that capitalism is abusive. Whenever people are expected to perform specific tasks in a predetermined way to qualify as having value, there are going to be people who don’t fit that norm. In my opinion, harm reduction is a more realistic goal than the complete abolishment of ABA, just like I believe that introducing policies like Universal Healthcare in the US is a more realistic goal than jumping right into complete socialism. By making room for compromise, without giving up the ultimate goal, we will see more people join in supporting change. I’m currently working on part 2 to my larger post about this topic, but I just wanted to state the ethical reasons for this parent guide.
For neurotypical parents with an autistic child, the diagnosis is likely scary to receive. You’ve just been told that there will always be a fundamental communication barrier between you and your child, and that you are likely going to have to completely adjust your life for your child. Good parents are left with seemingly only two choices: provide their child with no support or provide them with support that is often done incorrectly and can be abusive. If the child is not in public school, their available support is even more limited. All of these limitations to alternative services do not even include financial and time constraints.
Here are some important tips for parents. As always, leave a comment if you have more advice to give!
Establish open communication with your providers. This includes the RBT(s), center staff, and BC(a)BAs.
Have services in the home if possible. If you will be going to a center, ask to see the workrooms and common areas.
Attend any and all team care meetings! If your child is old enough, include them in this process as well.
Review the BIP forms if your child has one. This is how the staff will respond to your child’s unwanted behaviors.
Pay attention to how many hours the BCBA or evaluator suggests for your child. ABA research shows no benefit to increasing hours over 10-20 per week.
Review what reinforcements will be made available to your child during work time. Are you comfortable with food being used? Are your child’s comfort items being taken away to use as reinforcement?
Thoroughly review any and all programs being run with your child. What are the demands being placed on your child? Are the reinforcements natural and relevant? Is there a balance of “table time” and NET?
Learn more about the study of behaviorism and behavior modification
As you can tell from this list, being aware of your child’s services is your critical role as your child’s primary caregiver(s). You have the final say in any programming and procedures for your child. You or your insurance provider are paying for ABA as a service for your child, so you have the right and obligation to make sure that it is effective for your child’s needs. If you have doubts about this, just ask your child how they feel about going to sessions, and try to find out the reason if they don’t want to go.
ABA: Abolishment vs Adaptation Part 1
I have a unique perspective as someone who has all levels of connection to autism, which is one of the many reasons I am so passionate about it. I have family members who are diagnosed, I worked in ABA services for almost 2 years, and I have my own diagnosis of autism. Because of all these identities, I have conflicting opinions on the ABA debate that is currently ongoing on the internet. I’m going to explain both of my alternate opinions and then I will talk about how I have integrated them.
First, my identity as an autistic person will always be more important than my experience having worked in ABA. Also, I would like to acknowledge that I have worked at one ABA center in mid-Michigan and served 3 clients from ages 9 to 16 during that time. I cannot speak on early interventions or ABA with other populations, so I wanted to be extremely transparent about that. As an autistic person, I understand all the way that ABA has been found to be harmful. I wholeheartedly believe that the field as it stands cannot be allowed to continue as the damage to autistic individuals far outweighs any measured improvements in neurotypical definitions of functioning. ABA as a field has an extremely negative history, and it has not been updated to be applicable to all cultures and identities. I believe in the science of behaviorism in the sense that I believe that all behaviors (internal or external) have a function, and that understanding that function will help you understand the person. My agreement with the field of ABA and behaviorism ends there.
As a behavior technician, the person working directly with a child in ABA, I was in charge of collecting data and running programs that were created by my supervisor who supervised our sessions once per week and did evaluations to change behavior plans every 3-6 months depending on client progress. ABA emphasizes the use of Discrete Trial Training, which has the client repeatedly answer questions or complete small tasks in exchange for an immediate reward while the technician collects data on their responses. The strict programming of ABA is one of its fatal flaws because it does not allow for generalizability of any skills that a client gains from this technique. It also creates prompt dependence, where the client waits for the technician to help them with the answer, which cannot be considered learning.
My overall opinion leans more towards reform of the current ABA system for a few reasons. The first, and largest, is that ABA is currently the only therapeutic option for thousands of individuals and families. Because of the monopoly that ABA has on the industry, they are often the only providers in an area and the only ones covered by insurance and Medicaid. Because of this, simply removing ABA as a field would leave these people stranded and uneducated on their other options. Without creating a large enough pool of other therapists, we cannot ethically remove a service that so many people are utilizing. Also, there are a few skills that I believe ABA is great at teaching, when done ethically and correctly. Any skill that involves completing smaller tasks in steps is easy to teach with ABA because it rewards any small amount of progress and emphasizes teaching each step individually.
Obviously, with this being one of the longest posts to date, this is a huge topic. It is a discussion that impacts millions of providers and clients, so being able to have dialogue that acknowledges all sides of the issue is crucial if we are going to make progress. If you are currently an ABA professional who has found themselves here, check out some of my other posts to make sure that you are providing the best care possible to your clients. I will also be continuing this discussion in later posts, as this is not the limit of my opinions!
ABA: Advice for Neurotypical Professionals
If you are an ABA professional or you work with autistic people in a direct service capacity, the fact that you are on this page is already a win. There are remarkably few providers who actually value the opinions of the people they are serving, so I want to commend the ones who actually made it here. My opinions on ABA therapy are mixed, having been a provider myself, but in general I believe it to be over-prescribed and ineffective in the majority of cases.
The biggest piece of advice that I can offer to active and aspiring professionals is that you read pages like this that will give you the autistic perspective. Then, evaluate your school or business to ensure that you are actually benefiting the people you are trying to help. Your program would ideally have more autistic people on staff than neurotypical people, but this is often not the case. The next best thing would be to hire autistic people to work as independent contractors to evaluate your services.
Next, examine the environment that you are providing services in. No matter what kind of service you are providing, the environment needs to be highly customizable to the individual client, especially as you are beginning services. Programs can be added later to reduce the client’s sensitivity but during evaluations and the early stages of services they should be able to control the lighting, temperature, and smell of the room you are working with them. There should be ample activities that cover a wide range of interests and age groups and the client should have complete access to all of them. This is part of effective ABA protocol, but other types of interventions might not include this acclimation process.
The next piece to evaluate is your methods of data collection and intervention. Are you including the client's opinion in what areas they want to improve? Are you considering your own biases as a neurotypical person in regards to socially acceptable behavior? Does your business require that all types of stimming be reduced, or only stimming that is self-injurious? How long are you able to spend with the client before writing up intervention plans? Are your diagnostic and intervention materials inclusive of race and gender? By answering all of these questions, you can begin to determine if your services are truly for the benefit of the client.
In order to improve the service options that are available to autistic people and their families, neurotypical people need to be willing to adjust their expectations to match their client’s. Most people are able to communicate what they want and need in some way, so make sure that you are offering multiple forms of accessible communication. You are likely working in this field to try to help people, so make sure that you are truly benefiting your clients by revisiting these questions periodically. If you are in an executive position, these inquiries can help you make structural decisions that will gain and retain more clients in the long run.
ABA: Is it right for your child?
Because the field of ABA has a monopoly on research grants and educational funding, ABA therapy is often the only option offered by insurance for treatment of autism. There are people who feel strongly on both sides of the ABA argument, so no matter where you look you will find biased information.
I think that the autistic community with the privilege of an education has a sort of responsibility to protect current autistic children in the ways that we were not provided as children. The Americans with Disabilities Act was not passed until 1990, so there were whole generations of autistic people with little to no political protections. Because of this, we are living through a revolution of autistic empowerment now that we have the ability to do so in certain spaces.
For allistic (non-autistic) parents of an autistic child, the pressure to place your child in ABA services is overwhelming. Parents lacking relation to the autistic experience will not have access to the same information and might be confused and scared by an autism diagnosis. We can debate the reasons for this reaction, but that does not change the reality for parents.
The important thing to remember is that you know your child and family best. Practitioners tend to over-prescribe interventions because having your child in treatment more will allow them to bill you or your insurance for that time. If you decide to place your child in ABA services, here are some potential red flags to look for:
Interventions seek to stop or replace self-regulatory behavior that is not physically harming the child or others
The professional doing your program evaluation is not the person who will be covering your child’s progress and supervision
Your RBT changes several times
The therapist recommends more than 10-20 hours per week
If at a center, the therapy location is not sensory friendly for your child
Your child has an intense negative reaction and is inconsolable during the assessment
The therapists refuses your requests to supervise assessments and sessions
Programming focuses too much on “table time” or DTT methods and not enough time on Natural Environment Teaching and social interaction with others
The program requires targets to be met before providing food, water, or bathroom breaks
If at a center, they do not have bathrooms that accommodate your child’s gender identity
Programs do not have inclusive materials (Ex. only using emotion cards with pictures of one race)
You visit the center and can hear practitioners talking about their clients
ABA: What is it?
As an autistic person who has worked in ABA, I have an interesting perspective on the issue of ABA reform. Most people only have one of those perspectives, which is part of the issues I will talk about later. This post is not intended to bash ABA because I want to first educate people about ABA therapy and behavior analysis as a field.
Applied Behavioral Analysis is the field of analyzing people’s behaviors and then applying techniques to manipulate behavior towards a desired outcome. Notice that this definition does not specify whether the manipulator or manipulated is the one whose “desired outcome” is considered. This will become one of the major critiques of ABA later.
ABA therapy is defined as “a type of therapy that can improve social, communication, and learning skills through reinforcement strategies” (Healthline) that is primarily used for autistic children. Oftentimes, insurance companies will only offer ABA therapy as being covered, so most children only received those services. ABA services can be offered at a center or in home, but the treatment team usually involves a Board Certified Behavior Analyst who supervises and creates the treatment plan, and a Registered Behavior Technician who actually meets with the child and goes through the programs.
If you decide to take your child to ABA therapy, here is how that process generally goes. Please check out my list of questions to ask therapists to make sure you pick the right center and provider for you and your child.
A diagnosis of autism is received by a pediatrician's referral.
You can choose to notify your insurance and ask if any providers are covered, or you can wait until you meet a practitioner.
You make an initial appointment with one of the program’s BCBAs. Some use professionals who are qualified but not board certified, and these will be called Behavior Consultants.
During the initial assessment appointment, the BCBA will interact with your child and ask you questions about their health and behavior. You may or may not meet the RBT(s) assigned to your case at this time, as different centers do this differently.
A few days after your initial appointment, your BCBA will contact you to review their findings and to decide what programs you would like to include in the intervention plan. Most centers have you meet the RBT by this point.
When an RBT is assigned to your case and a schedule is made, your child will begin their services.
I hope you found this sort of timeline helpful. Remember to check my other posts about ABA to make the best decisions about your child’s care. I have included links to some sources discussing this issue as you begin to form your opinion about this.
Brief History of ABA (Applied Behavior Analysis)
A Study in the Founding of Applied Behavior Analysis Through Its Publications
ABA Therapy: How It Works, Examples, Cost, Controversy
Is the Most Common Therapy for Autism Cruel?
Exploring Quality in the Applied Behavior Analysis Service Delivery Industry
The Fuzzy Concept of Applied Behavior Analysis Research
5 Important Reasons Even "New ABA" is Problematic
A Commentary on Critchfield and Reed: The Fuzzy Concept of Applied Behavior Analysis Research
Replication Research, Publication Bias, and Applied Behavior Analysis
Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature