deeko’s gonna be alright

I’m writing my observations down as I read An Early Start for Your Child with Autism. An earlier post left off around page 15, where the book was discussing how hard it is to coordinate an interdisciplinary team of professionals.

The next thing that struck me is this passage:

If your child is uncomfortable, tired, or in pain because of a medical issue, your child may start to become aggressive, have a tantrum, or become lethargic. These “problem behaviors” may be viewed by the physician as “just part of the autism.”

This is a recognition that “problem behaviors” are a product of the child’s distress and discomfort. When “autism parents” complain about meltdowns, the norm does seem to be treating it as “just something autistic kids do.” I would ask, is it necessary for the child to be in that much distress? Are the parents making them tired, uncomfortable, or hurt? If an autistic child’s meltdown was about something completely legitimate, how would anyone ever know?

The behaviorist mindset, which is the norm, discourages people from thinking about the child’s internal experience, which is the original point of behaviorism. BF Skinner wrote a book called Beyond Freedom and Dignity. Just saying.

Up to this point we’ve been focusing on your child. But what about you? Like your child, you and your family need special attention as you meet the challenge ahead.

That’s not true. They’ve been focusing on the arrangements made between the parents and various professionals. The next chapter goes into great detail about all the problems autistic children create for the whole family, and how to cope with those problems. There’s advice on married couples getting along (single moms ignored). There’s advice on taking care of your physical health. Attending to the non-autistic siblings. This is the point where emotions get introduced. There are sections with headers like “Grief” or “Depression and Anxiety.” The previous chapter listed every conceivable sort of specialist a child might need to see for all their comorbid medical problems, but there was no mention of psychotherapy for the child. Non-autistic people have grief, depression, anxiety, and spiritual needs. Inner lives. Autistic people have problem behaviors.

In this passage, it feels like the authors don’t understand how an autistic child is playing, but they sneer at it. First, they describe a normal infant that “learns during every waking moment of the day.”

Now let’s compare this child to a young child with ASD. She wakes up and also begins to play in the crib, but her play is different. She may ignore the toys and instead be fascinated with the way the light is shining through the crack in the curtains. She may tilt her head back and forth to experiment with the light, noticing how it changes with her head movement, watching her hand and fingers move in the light. She may spend a long time rocking her head back and forth, watching the light. She is quiet, not making many sounds. When her parents come to get her up, she does not look to see their expressions or turn to their voices. The light patterns still hold her attention. She too is learning, but instead of learning about toys, speech sounds, faces, and people, she is learning about patterns of light and movement. She has missed important opportunities for learning how to communicate, socialize, and play, because she didn’t call for her parents or watch them come in and because the light was more interesting to her than the toys. Her long attention to the light and to the movements of her fingers and head has interfered with her attention to other learning opportunities available to her.

Why are these toys supposed to be interesting to her? Do they have symbolic significance for the parents that the child is too young to understand? Why is learning about patterns of light and movement self-evidently bad? Why is it excluded from the definition of play? A bit later,the book illustrates that children playing with their senses will engage with the parents when the parents do something fun and interesting.  This looks fun to me:

Have the authors ever continued watching TV when somebody walked into the room and snapped at their partner for not waiting for the commercials? Socializing is great and everything, but fascination is also very good for you. The basic capacity to have fun being curious for its own sake is widely lacking in mainstream culture, which is why mainstream culture doesn’t appreciate science as an activity or process. Science is considered “dry and boring,” even though science is just logic applied to nature.

Once I pointed out the concentric and intersecting ripples on a lake, making complex patterns. I was baffled and a bit sad when my acquaintance said “but that’s just math,” dismissing it.

When you interrupt a child in mystic contemplation, of course they experience it as sacrilegious. The point of ketamine isn’t what’s happening on the outside. Deeko’s gonna be alright:





You can’t judge the richness and complexity of someone’s internal experience from their external behavior.

I grew up to have interests in philosophy, psychology, and neuroscience. I can think of things I did in childhood that helped with my intuition. I was older than the child in that passage (elementary school), but I remember closing my eyes and pushing on my eyeballs to see “closed-eye visuals.” You can perceive things that aren’t real, as a form of play. It shows that your perception is something your eyes are doing, and not something that’s just…there. I used to love spinning until I was dizzy and then stopping and watching the world move. I loved those “Mind’s Eye” books from the 1990s:

I could never do them properly, though. I can’t make myself go wall-eyed. I could only cross my eyes, so that I’d see the pictures sink into the page instead of popping out of it. I thought it was interesting that crossing my eyes doubled my vision. I used to get fascinated by the fact that each eye sees the world from a different vantage point, so that sometimes objects are visible in one eye but not the other. In those cases, you see the occluding object as a transparent “ghost” version of itself, making you aware of foreground and background simultaneously.

I was at the skatepark yesterday, trying a backside tailslide for a long time. Basically a perseverative loop. I’ll be sore tomorrow, but I eventually got the trick. It struck me how many different ways I did the trick incorrectly, and how I intuitively knew what was going wrong. Sometimes my body was ahead of my board, so I stuck. Sometimes my back foot drifted toward the middle of the board, so that my tail locked on, but both feet were on the midsection. Sometimes I overshot into a backside lipslide, from jumping too high. Sliding a bit, but without control because only the tip of the tail is connecting on the ledge. Wheels sticking to the ledge. Not jumping high enough. Being unprepared for locking into the slide when you get closer than expected.

From the outside, it looked futile to keep trying, but I was learning from the mistakes. It might not’ve looked purposeful to someone else until the moment I finally put everything together and landed it. The individual pieces of getting it right are being assembled. Difficulty transitioning between activities. Can’t leave park until I land it.

Overheard: “Shit, I’m gonna learn that.” Several years ago, I was in a loop trying to kickflip up a low-ish ledge. When I landed it, a parent thanked me for giving his kid an object lesson in persistence. My autism stuff isn’t always bad, even if skateboarding is a self-injuring stim. It was getting painful because I have a rib injury from rollerblading.

There’s another side to even that. In grad school, I remember taking two different friends skateboarding for the first time, in my usual parking lot. One of those times, I landed primo on a bigflip and scraped up my hand a little bit. I was more surprised at the overreaction from my friend. Nobody would’ve said anything at the skatepark, especially. I fell trying a unity grind on my rollerblades near a basketball court, and someone asked if I was alright like he wasn’t comfortable with the extremeness of what was happening. In all of these cases, my feeling was that these people didn’t fall down enough as children, and don’t fall down enough now, and it’s not good for them. I feel like they’re the ones who have an anxiety problem.

It’s good that your body should experience leaping. Not landing your tricks is the only way of learning your tricks. Both skateboarders and rollerbladers have observed that the best skaters are also the best at falling without getting injured. It’s about keeping fully in touch with your body and keeping abilities in use, including all your subconscious vestibular/proprioceptive stuff. The cerebellum?

I don’t think this next point receives enough emphasis:

The study actually found that even before they were taught the techniques, parents naturally used many of these techniques between 40% and 60% of the time during their typical play activities with their children. However, after only a few hours of coaching and a few weeks of using the techniques at home, most of the parents were using the techniques over 90% of the time.

This means that the approach, for better or worse, completely dominates parent-child interactions. Any problem with the techniques would be a pervasive problem in the family dynamics.

A majority of parents spontaneously arrived at the techniques. What if using them about half the time made them “good enough mothers” and the kid would’ve been fine without “intervention?” Is the Early Start Denver Model a bunch of stuff you should be doing, anyway?

One mistake I made was trying to get more and more interesting toys, hoping my son would learn to play with them if I found something that caught his attention. It was much easier and more effective to take whatever he was using as a toy and create a game around that. We developed games as simple as “Tickle the body part with a duster” that were great fun and much more effective than imploring my son to meet his goals by obediently pointing to a body part on command. Some of my son’s favorite games included ‘Spin!’ (being held while we went in circles), bouncing in and out of the crib, and running cars around. All of these built simply on everyday activities and then let us add more and more learning opportunities.

In other words, children respond to a playful and spontaneous attitude in their parents. The whole tone of this approach is so grim…