the earliest intervention for autism should be therapy for the parents

As part of my quest to understand why I’m not more fucked up, I ordered some autism parenting books. I just started with An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn, by Rogers, Dawson, and Vismara. It’s based on the Early Start Denver Model:

This early intervention program integrates a relationship-focused developmental model with the well-validated teaching practices of Applied Behavior Analysis (ABA). Its core features include the following:

  • Naturalistic applied behavioral analytic strategies
  • Sensitive to normal developmental sequence
  • Deep parental involvement
  • Focus on interpersonal exchange and positive affect
  • Shared engagement with joint activities
  • Language and communication taught inside a positive, affect-based relationship

That sounds like it might be good, but I’m not clear on what exactly it means.

The book gets started with a vignette intended to validate parents’ distress:

Carmen and Roberto went home in a sea of worry, grief, and questions. For a few days they were just numb and couldn’t talk about it or even think clearly about anything. They went through the next few days like robots–going through the motions of everything they had to do at work and at home, but feeling numb and sad.

OK, the first the thing parents could do is get therapy themselves for hating autism and putting their child at risk of later attachment problems with their flat affect, depression, anxiety, and likely taking it out on the child. They could work on their own alexithymia and impaired communication, and they might consider medication if they’re struggling to complete daily tasks. If the parents had their own shit together, and preferably before conceiving, they could then model good behavior 24/7. All that therapy would improve their own mentalization abilities, and thus their ability to empathize with their child and know what to do spontaneously. Less yelling and tension in the house will help their child stay calm, most definitely.

I believe that intervention is widely available (compared to cutting-edge autism treatments), easily implemented, relatively affordable (hundreds/month, for biweekly sessions), logistically feasible (hours/month), and evidence-based. Such treatment should include homework of reading materials by autistic people explaining why they do things and how they experience things.

I believe that, in the real world, many parents would resist doing individual and/or couples therapy as an early intervention. That really says it all, about those parents. On the merits, therapy for the parents has a stronger evidence base than other things parents try. Do they want what’s best for their family or not?

The book explains how parents get overwhelmed with all the information and OMG all the things they have to arrange!

At first, the new terms, the difficulty in finding good treatment, and the uncertainty that lies ahead make many parents feel like getting into bed and hiding under the covers. Fortunately, this feeling is soon overshadowed by the determination to find out what is best for their child and to find the best intervention available. But getting these answers can be difficult. There is so much out there–so many different opinions and so much disagreement among people.

The book then proceeds with a 1-page crash course in evaluating sources. I can say from experience as a TA that that’s not enough to make people understand about reliable sources.

It would have been helpful to say that their child feels like getting under the covers all the time, and unfortunately this feeling is NOT soon overshadowed, and calls for loving patience. What if they’re out in the world, and there are no covers? Try to understand stimming in stressful situations.

You know one thing that wasn’t helpful? Having my parents catastrophize about what’ll happen if I don’t get straight A’s. I swear that parents need to get a grip. I went around town unsupervised on a skateboard in a foreign country where I didn’t speak the language, with undiagnosed autism. It was the best and worst of times. There was one time I let a kid ride my skateboard and he wouldn’t give it back and tried to fight me. My parent had enrolled me in Taekwondo 2 years earlier, and I got a yellow belt. I had this thing where I always folded my fingers over each other and the teacher said it would be really bad if someone kicked me when I was doing that. Anyway, I did 2 sweep kicks and a spinning back kick that was aimed at the kid’s chest but actually hit him across the cheek and made me look like a fucking ninja. Try to take my skateboard, motherfucker! All subsequent fighting experiences in Italy were…less triumphant. I think the kid was also smaller and younger than me.

My dad was like, “You should defend yourself. This is how.” He didn’t raise me to react like “OMG I’m socially retarded no hitting I don’t know what to do I don’t know what to do somebody HAAAAAALP!” Among other things, that might not always work because Italians have no reason to all know English. Before moving to Italy, he was actually disappointed the time I was at the neighbor’s house who had a trampoline, and everyone turned on me and I cried and left. “Why didn’t you use your Taekwondo?” Indeed. I was really into Shaolin monks in middle school, and wanted to find Wing Chun lessons.

Teaching your autistic child to fight is another intervention that might be useful if you’re really worried about them, because people will probably try to beat them up.

Presumption of competence goes a long way.

When my daughter was little with almost no language I could not understand how it was possible for her to learn to read and write if she did not speak first. I was surprised and confused when I learned how completely wrong I was. When I read about all the non-speaking Autistic people who had learned to read and write despite being given no formal instruction, it seemed magical to me. This mind that seemed, from my limited perspective, to not understand so much, actually was taking in far more than I could imagine, let alone believe. It wasn’t until I was able to see my own limitations caused by the things I had been told about autism and hence, my daughter, that I was able to move beyond that thinking and embrace another way of thinking. I had to acknowledge my misperceptions and the misinformation I was given, then I had to question everything I thought I knew and was being told. I had to seek out Autistic people who were kind enough to share their own experiences before I was finally able to dispense with my erroneous ideas and move beyond them. In case anyone’s missing it, there is a certain irony in my early assumptions regarding Autistic competence.

You keep turning the pages of the book, and then you see the scariest list of best practices ever:

  • Intervention should begin as soon as possible.
  • The intervention program should be individualized for each child, taking into account each child’s unique characteristics, strengths, and challenges.
  • The intervention program should be designed and overseen by a trained, professional, interdisciplinary team.
  • A curriculum that focuses on the specific areas of challenges in ASD should be used.
  • The program should provide for ongoing data collection on the progress the child is making in each skill area, and adjustments to the program should be made when progress is not evident.
  • The child should be actively engaged in the intervention activities and should receive at least 25 hours of structured intervention each week.
  • Parents should be closely involved in the intervention, as well as in setting goals and priorities, and should be taught how to implement the intervention strategies at home.

Holy fucking shit that sounds hard. It looks like you have to build a spaceship as soon as possible and destroy the aliens heading our way before the world ends. You don’t just take your kid to the doctor? What are these “disciplines,” “specific areas of challenges,” and “intervention strategies?” I’ve never been the boss of anybody, let alone set up a trained, professional, interdisciplinary team of people with graduate degrees.  I dropped out of high school!  Intervention like everybody gets together in a circle and shames a drug addict? My job dicks my schedule around every week, so how do I schedule more hours than I can get some weeks and keep a routine? My boss will look for a reason to fire me if I have too many childcare issues…

You might just have to kill your kid or something. Jesus.

This is a book about everyday activities, just to tide you over until you do all of the above.

Based on my (limited) experience volunteering with “homeless youth with behavior problems,” I think this list would make a lot of parents feel bad about themselves. I imagine it’s like being handed a test and knowing you’re going to get a D- except it’s taking care of your own child and you want to cry.  It’s not that people don’t need help setting up an IEP for their kid, it’s that this is before talking about things like making your child feel safe and loved, making parents understand autistic behavior,  so they’re not hurt and offended by lack of eye contact and take it out on the kid, etc.  Parents with alcoholism and impulse control problems also have children with autism.

Turning the page…

As we have said above, high-quality programs use EBPs. Most EBPs have come from the field of applied behavior analysis (ABA). What is ABA? ABA is the use of teaching practices that come from the scientific study of learning to teach or change behavior. The principles of ABA can be used to teach new skills, shape existing behaviors into new ones, and reduce the frequency of problem behaviors.

For the confused reader, “EBPs” is “evidence-based practices,” which was defined 2 pages earlier. Using acronyms in this way, where you defined it the first time and the reader can damned-well read your publication from start to finish, makes it hard to read for people who don’t read academic stuff all the time. If by “evidence-based practices,” they mean “these treatments are good and those treatments are bad,” they should just say so directly. The goal is to help parents raise their kids right, not to stay under the length limit for an abstract.

I don’t like that the uses of ABA have nothing to do with the child’s inner life and their own interests or agenda. It’s all about experts and parents knowing best and controlling things.

I think people struggle to understand that sometimes the best approaches to problems are indirect. Compare all that “intervention” and these passages from the “Control” chapter of Zen Mind, Beginner’s Mind:

Even though you try to put people under some control, it is impossible. You cannot do it. The best way to control people is to encourage them to be mischievous. Then they will be in control in its widest sense. To give your sheep or cow a large, spacious meadow is the way to control him. So it is with people: first let them do what they want, and watch them. This is the best policy. To ignore them is not good; that is the worst policy. The second worst is trying to control them. The best one is to watch them, just to watch them, without trying to control them.

The same way works for you yourself as well. If you want to obtain perfect calmness in your zazen, you should not be bothered by the various images you find in your mind. Let them come, and let them go. Then they will be under control. But this policy is not so easy. It sounds easy, but it requires some special effort. How to make this kind of effort is the secret of practice. Suppose you are sitting under some extraordinary circumstances. If you try to calm your mind you will be unable to sit, and if you try not to be disturbed, your effort will not be the right effort. The only effort that will help is to count your breathing, or to concentrate on your inhaling and exhaling. We say concentration, but to concentrate your mind on something is not the true purpose of Zen. The true purpose is to see things as they are, to observe things as they are, and to let everything go as it goes. This is to put everything under control in its widest sense. Zen practice is to open up your small mind. So concentrating is just an aid to help you realize “big mind,” or the mind that is everything. If you want to discover the true meaning of Zen in your everyday life, you have to understand the meaning of keeping your mind on your breathing and your body in the right posture in zazen. You should follow the rules of practice and your study should become more subtle and careful. Only in this way can you experience the vital freedom of Zen…

But perfect freedom is not found without some rules. People, especially young people, think that freedom is to do just what they want, that in Zen there is no need for rules. But it is absolutely necessary for us to have some rules. But this does not mean always to be under control. As long as you have rules, you have a chance for freedom. To try to obtain freedom without being aware of the rules means nothing. It is to acquire this perfect freedom that we practice zazen.

Any autism parent can start a meditation practice right now for free. It would help with parenting, and it would help with staying grounded that you’re still here, your kid is in the next room happily lining up their toys, and they’ve made it this far without 25 hours of interdisciplinary intervention teams and their ongoing data collection.

I haven’t gotten far enough into the book yet to know what the Early Start Denver Model even is. Reserving judgment until then.  This is just my immediate, visceral reaction to starting the book.