When my son was diagnosed with autism at 17 months by a developmental pediatrician, she suggested I enroll him in ABA therapy immediately. She gave me a sheet with a long list of providers and very little information about each one. My son’s Early Intervention coordinator had warned me that I needed to carefully screen ABA providers because she’d had bad experiences with a few. When I went online to ask for recommendations and find more information, I came across even more horror stories. Autistic adults who had gone through ABA therapy in the past described abusive therapists. One man had a therapist force him to touch something he found repulsive. He eventually learned to hide his repulsion, but he never got over his distaste for that substance. There are certain fabrics that I can’t stand, and the idea of being forced to touch them over and over while I learned to school my reactions makes my skin crawl. Imagine being forced to listen to nails on a chalkboard (or some other noise you find abhorrent) and then punished for your reaction.
Multiple individuals described how their therapists forbid then from flapping their hands as well as an ABA therapist who insisted that children had to sit completely still in order to learn. I discussed this with a neurotypical Greek friend of mine who said, “If I can’t move my hands, I can’t talk.” As an anthropologist by background, I find great value in neurodiversity. I have no desire to turn my autistic son into his neurotypical twin brother. Autism can be a blessing and I want my son to be treated with the dignity and respect he deserves. I don’t want to cure his autism. At the same time, I needed more help. He had been in speech therapy for a few months and occupational therapy for over half a year. Even with these efforts he showed no understanding of words, pointing, and spent a great deal of time stimming by himself, which he does when he is overwhelmed by the environment. Of the 20 questions on the M-CHAT, 16 answers I marked showed a risk for autism. Autistic adults suggested RDI [Amazon link to the book I found most helpful] and Floortime. I bought the books and joined groups, but most parents had children much older than mine and I found it difficult to carve out concrete plans. In an RDI group, I had people telling me to teach my 17 month old son mindfulness without going into details. The nearest RDI therapist was 3 hours away, and my insurance only covered ABA. While it was very clear that ABA done incorrectly can be abusive, I also found positive experiences. One thing that my son’s EI coordinator made clear was to remember that the therapists worked for me. I could control the experience. I figured I might as well try it out and see if I couldn’t shape it into a positive experience for my son.
The first thing I did was find companies that applied ABA in an evidence-based, but child led way. I used the guidelines in the amazing book An Early Start For Your Child with Autism, which I highly recommend for all parents of autistic young children. On page 21, they have a checklist of criteria for measuring the quality of a home-based early intervention program. Amongst other items are:
- Does the program manager have an education background appropriate for working with young children with ASD?
- Have the program manager and all home therapists passed a criminal and educational background check?
- Have the program manager and therapists been trained and certified in an intervention method with scientific evidence to support it?
In order to assess how well the services met this checklist, I sent an introductory email to the various companies explaining what I was looking for in ABA therapy and also what I didn’t want. I introduced my son and his fascinations (cars, music, swings), and said that I had read about issues with ABA and didn’t want any form of punishment. While some companies glossed over this, the one I hired acknowledged that there had been issues with how ABA had been applied and assured me that they did not punish their charges. Another thing I found out through my eventual ABA therapist is that companies in North Carolina are allowed to hire people who have no background in a relevant field and have them put to work after 12 hours of training. They are supervised by a BCBA, who has more training, but I insisted on having therapists who either had an educational background or experience working with children under the age of 3.
Once I picked a company and set a meeting with my son’s therapists, I explained in detail what I hoped to accomplish. I emphasized that I wasn’t trying to turn my son neurotypical and wanted to keep the sessions as playlike as possible. I gave them my copies of my RDI, Floortime, and An Early Start books with activities, goals, and views of treatment highlighted for easy reference. They agreed to incorporate the techniques into the work. I insisted on staying beside my son and participating in all the sessions. If you encounter a therapist who wants you to leave, run, especially if your child is unable to communicate fully.
Based on what I had read online, I expected that I’d need to correct or change some of their therapy methods, but I’ve actually been very happy with the type of therapy that they’ve provided. On the other hand, I’ve had a speech and an occupational therapist that I replaced. One occupational therapist went through a checklist of items that my son was supposed to do at his developmental stage and would push that task on him. For example, he was supposed to be able to stack blocks, so she would force him to sit and stack blocks. This isn’t how we teach neurotypical children at that age. With his twin, I would stack them in front of him and do a little hand over hand, but I never pushed him to do something over and over again and didn’t let him leave until he finished. With her, he never stacked more than 3 and only after pressure. After she left, I never once pushed him to stack blocks. He stacks them perfectly now.
The speech therapist I fired would force him to sit in a chair on the floor and she’d sit less than a foot away, ignoring his pleas to leave the chair. It was clear by the end of her visit that he was overstimulated by her presence. The other speech therapists followed him around and enthusiastically joined him in play, similar to the ABA therapists. In the Floortime book Engaging Autism [Amazon link], the authors stress how important it is to follow the child’s lead and enter into their world, rather than trying to force them into ours. If my son wants to play with cars, we play with cars. The therapists do bring their own toys, books, puzzles, etc to help him with certain tasks, but never force him to do a task, and certainly never physical force him to finish the task before allowing him to engage in play. We do have house rules, which they help enforce, but the rules we enforce are things like No Pulling Tardis’s [our cat] Tail.
It’s not enough to avoid punishment. Even positive reinforcement can cause harm if done incorrectly. For example, a child might be forced to meet their parents eyes before being given food. While it may not be painful for a NT person to meet someone’s eyes at close range, many individuals with autism experience extreme discomfort. Because of this, I never enforce eye contact through any means. I do friendly activities that encourage him to look at my face, but he’s never forced, not even to receive his favorite treats.
I’ve had some people (always on the internet and never in person) tell me that if I’m not strict and quick to push therapy to ‘correct’ or ‘cure’ him that he’ll never develop and I’ll have to place him in a home when he’s older. Total bullshit. In half a year, my son has gone from no understanding of language to testing out of speech therapy with both expressive and receptive scores above average. Therapy doesn’t have to be forceful to be effective. You don’t need to remove all traits of autism for a child to have a successful life. My son still doesn’t like direct eye contact from people close by. That’s absolutely fine. I know many creative, successful, kind adults who found direct eye contact a source of discomfort when young, and others that still find it difficult. When he does give me glances when I play patty cake or other games that involve close contact, which are growing more frequent, I know that they are driven by his desire, not out of duty.
There was an ABA therapist I encountered online who claimed that getting children to sit still in a chair with their hands ‘quiet’ was necessary for them to learn. Total bullshit. Do hunter gatherers force their children to sit in chairs? Do we force preschool children to sit in chairs? Exercise helps neurotypical people learn, and recent studies have shown the benefit to children with ADHD as well. Not all schools or jobs require an individual to sit completely still. In fact, for many jobs, being able to think while moving is critically important. A mother I know who homeschools her autistic children has a circuit she has them complete in between sitting down to read and doing homework.
When considering what to do in therapy, I always ask myself, “Is this necessary?” For some things, like putting on sunscreen or getting him to sit in his car seat, it is necessary. For many things, it is not. In ABA therapy, when a behavior is problematic, the therapists are supposed to look to the root and address it instead of the behavior. My NT son had a huge problem with throwing things. I asked the ABA therapist what to do about this behavior (I ask a lot of questions about my NT son, since I think it is very helpful for all children). She asked me to consider why he was doing it. For attention? Because he doesn’t know how to set them down gently? To see how things work? Once I realized that he was doing it out of not being taught how to set things down gently, I focused on teaching that behavior. Another problem we had with him was hitting. I figured out that his hitting was him wanting to rough house, but lacking the ability to ask for it. Once I taught him how to ask for rough housing but, more importantly, giving him regular opportunities to rough house, the hitting vanished.
In an Aspergers Experts video, a resource produced by individuals with Aspergers, they discuss the sensory funnel and how parents and therapists often try to tackle the social and self-help skills first. A good ABA therapist understands the sensory funnel and focuses on trying to meet the children’s sensory needs first. A good ABA therapist focuses not on trying to make the child act NT, but to help them with certain deficits that cause problems in their daily lives.
When therapy is done with the goal of erasing autism, then that therapy, whether it be Floortime, RDI, ESDM, ABA, or something else, it will always have the potential to be abusive. If a therapists believes homosexuality needs to be cured, then their therapy will have an extremely negative impact on their gay client. If the focus is on acceptance and understanding, then it is far more difficult for abuse to occur, even in systems of therapy that have the potential to be incredibly abusive. As I’ve stated before, this doesn’t mean that a parent must accept and embrace every single thing their child does. We certainly put limits on our NT children and shape their behavior. It is simply critically important that a parent focuses on what is actually deleterious rather than what is atypical, since some atypical behaviors can be strengths.
So how does the ABA therapy work? What do they actually do in a session if it’s mostly play? Most of the time it’s as simple as getting out a bag of bubble toys along with another toy, asking which one he wants, and praising him when he indicates which one he wants. The therapist will blow a bunch of bubbles, then pause and ask him if he wants more, saying “more buh-buh-buh-bubbles?” When he was learning sign language, we’d do hand over hand to get him to sign more. Then we started working on getting him to say more by enunciating the “m” sound of more. “Mmmmm more? Mmmmm more?”
The therapists also help me solve various problems I run into in my daily life. For example, my son started refusing to sit in the shopping cart. He’d reached the point where it was difficult to carry him through the store, and I couldn’t always go to the store alone. With the help of the ABA therapists, I figured out how to get him into a shopping cart without a meltdown that lasted throughout most of the shopping trip. When he gets out of the car, I let him walk around the car and talk about the wheels for a set amount of time. He’s obsessed with wheels and will fixate on them if we don’t let him have his ‘fix’. Once he’s expressed his joy of my car’s wheels, I walk with him to the store. Brother is pushed in the cart, but my son prefers to walk past the other cars and the ABA therapists taught me how to get him to let me hold onto him in the parking lot. He doesn’t like to hold my hand, so I let him hold play cars while I steer him by his shoulder or upper arm. When we are inside, I put both boys in a cart and offer them each the choice between two special treats. Usually my son selects a tablet preloaded with educational apps. On our last trip to the store, we got compliments on how well behaved both boys were. Before we instituted these measures, going to the store was extremely stressful for both of us.
I’m constantly looking for things to avoid and techniques to integrate. I want to know the bad experiences people have had so I can be sure to avoid those with my son. I also want to hear about what worked for other people. We are still learning about autism and I’m sure our children have much to teach us.