Sometimes I miss the halcyon days of my son’s diagnosis, in which the only struggle was acquiring this magical therapy they called “ABA” that would fix everything. What it was fixing we still hadn’t figured out. The early days were difficult because there was no guide to parceling out the legitimate concerns (gross motor coordination, fine motor skills, safety) from the superficial ones (echolalia, arm flapping, eye contact). And even now, years later, there are still those grey areas in between.
ABA sucks. Autists know it. Parents know it. The therapists know it. In many ways it resembles the medicine you buy when you have a cold. An ineffective way of feeling like you can “do something” when faced with a series of symptoms that you can, at best, slightly mitigate.
I say symptoms, because as somebody who grew up in the care of many therapists, I realize that the world can be a terrifying place when you’re a child and struggle with behavior & mental patterns you can’t control. Some behaviors are harmful, and no matter what you do you can’t grow out of them and you need assistance. The trouble with ABA is that unlike the kind of care I received when I was younger, ABA is
- Wildly inconsistent. There are thousands of ABA providers across the country, each pursuing their own undocumented, unregulated interpretation of ABA therapy and what it means. It can range from stringent dog training to various methods of group play, and none of it follows any particular framework that can be monitored for quality or abuse.
- Horribly mismanaged. The ABA industry has high attrition, low customer satisfaction, is often sloppy, and more often than not owned & operated by former instructors who have very little business acumen. It’s the only “medical” practice in which an individual can be pulled off the street, given 6 weeks of training, then sent out as a “therapist”. Therapists are often payed very little, are typically younger and inexperienced, and are managed by individuals with only slightly more time in the industry. This creates a culture of confusion or disorganization in which therapists arrive with the best of intentions only to quit or get moved too quickly up the chain.
- Lacks involvement from actually autistic. The ABA industry rarely leverages the knowledge and skills of individuals on the spectrum to provide and improve its services. It took my wife and I years to find a program where actual autistic individuals were employed as part of the program, and sadly, this was a program only offered in the summer. It’s lunacy that providers wouldn’t see opportunities for both leadership and mentorship in employing individuals to be their north star in developing programs and methods of applying services.
- Is harmful. The tales of ABA applied as an abusive, hurtful, and traumatizing form of drill instruction are well documented by the likes of Sparrow Jones and Ido Kedar. If you’re still not cynical enough for what I’ve written above to feel like it applies to you, stop reading this and read what they’ve put to print.
- Doesn’t seek to improve itself. I believe strongly in the principles of Kaizen and Six Sigma, in which an organization should be continuously self-evaluating to find areas to improve. This is a discipline that requires humility and sacrifice. What I don’t see, even within the larger ABA providers, is a philosophical responsibility to be listening, monitoring, measuring, and challenging itself to evolve. This is a dangerous manner of conducting business which eliminates the voices of dissent that are healthy for growth.
I consider myself neither a “warrior” or “super” anything when it comes to my child’s care. I discovered shortly after having children that parenthood is largely a farce, and a parent’s ability to seem wise and in control is as much a carefully constructed fantasy as Santa Claus. My son doesn’t need a cure. But he does need assistance in areas in which he struggles, not as a means of becoming “normal” but to allow him the ability to stretch himself in areas which there are opportunities to grow. And as much as I hate to admit it we still do rely on ABA to offer that extra bit of tutorship that we lack the ability to provide.
Here are my family’s four rules for begrudging use of ABA, which are always open for improvement and constructive feedback:
- No distress. If at any moment the therapist’s “program” is causing what can be perceived in any way as distressing or discomforting we’re done. No crying. No eloping .Therapists get one warning. We monitor this very closely and failure to adhere results in immediate termination of the program and relief of the therapist.
- No drills. Ever. I hated school. I still get panic attacks just thinking about the parking situation on the average campus. It’s bad enough my son has to deal with K-12 as it exists in its dreadful current state. And while school is required by law, therapy isn’t. My son’s therapist role is to provide support, not instruction. This means learning via activities he finds fun and engaging. This also means no busy work or other classroom resembling crap.
- Follow his lead. My son’s programs are determined by his interests and that which he has explicitly expressed a desire for support with. For example, he’s recently taken a strong interest in his peers on the playground (like his father he’s not very good at social interaction), so he’s often disappointed when his attempts to engage peers don’t work out. He’s also fixated with learning to read. So, his programs are literally “assist him with making friends on the playground / assist others with making friends with him” and “help him learn to read new words and books”. This is another instance in which the therapist gets one warning. If we see anything resembling flash cards with animal pictures or some other boilerplate ABA shit we’re done. In addition, our son is given autonomy to determine the best ways in which to approach these topics. If he likes certain videos about reading, or a specific book, that’s what we’re using.
- The relationship must be mutual. We make tremendous efforts to ensure that the therapist he’s paired with “clicks” in a meaningful way. Even though his verbal skills are limited, it’s not difficult for him to express feelings regarding individuals whose style he doesn’t like or who, for whatever reason, he doesn’t respect. Having him work with somebody who reciprocates that respect and isn’t going to make assumptions about him based upon his inability to express himself verbally goes a long way in establishing rapport. While this takes a long time (and leads to a lot of dead ends) it has afforded him what I would consider a much richer experience that goes beyond the dreary confines of what has been described as typical ABA. The time he spends working with his therapist resembles the kind of relationship often seen with big brothers, and the joy he expresses in the time he spends with his “buddy” has boosted his confidence in engaging challenges he has difficulty with.
I believe strongly in the principles of Kaizen, or “change for the better”. As I read testimonials from individuals on Twitter, on blogs or in books I try and refresh my list and apply new better practices. Feedback as always is welcome :)