Down time, or what the Red Queen needs

Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else — if you run very fast for a long time, as we've been doing."

"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!"

One of the scariest things about the general topic of Applied Behavioral Analysis, to Autism Diva, is the idea of putting a small child into 40 hours, or even 20 hours a week of ABA therapy. Now it seems that just about anything can be called "ABA" therapy these days, but still 40 hours of direction from an adult or peers per week has to be exhausting for any kid. And think, these 40 hours are usually provided by several different people over a week's time, so the therapists aren't necessarily doing this 40 hours a week, but the kid is there the whole time.

In it's most perverse form, in ABA nearly everything a child does for that 40 hours is documented, so that after the years of this that some kids endure, their lives are cataloged in a perhaps a floor-to-ceiling bookshelf full of binders containing "data" on their "behaviors emitted" and "behaviors extinguished." There's something far, far too cold blooded about that for Autism Diva. It really seems like a kind of disease that people would think that this was OK. But the attitude is that autistic kids are so hideous and outside the realm of normal that they can't expect a "normal" childhood with lots of free time and learning their place in their family and community.

No, what they seem to be teaching autistic (and other) kids is that "You are not one of us," "Your siblings and normal peers aren't treated this way, but they are not like you." These kids are "special" in the worst sense of the word. They need to have their every movement counted and categorized and above all controlled.

That's just insane. Sure, kids can be taught some things this way, but at what cost to the child? Never mind the cost to the families that give up massive amounts of privacy having therapists in their homes (frequently) 40 hours a week. Of course, this is usually just the experience fairly well-off people. Poor people might have the county send out a childhood development person for an hour a week or something like that, that is if the child is identified as having a problem at all before school age.

But here is an example of how the cult form of ABA affects the true believers. Every one of the child's waking minutes is to be used for "therapy," else-wise, the parents are failing their autistic child.

Outside Therapy - What To Do During "Dead" Time

This is a mom’s perspective Shannon on what do with “dead time” non-therapy time.

FILL UP THE DAILY "DEAD TIME"

In planning your daily, weekly schedule for your child with Autism-Spectrum Disorder (ASD), you should make a plan to fill up the "dead-time" in your child's day.

Try an experiment for ONE DAY. Go through the entire "regular day" with your ASD child and actually count the number of minutes that your child is in "dead time". The result may surprise you.

What is "Dead-Time"?

1. Dead time is time OUTSIDE the ABA therapy sessions.

2. Dead time is sitting in a car going from one place to another. Typical children will look around, look out the window, comment on what’s seen, or just chat. Your ASD child will just sit, absorbing nothing of value - Your ASD child is in "dead-time".

3. Dead time is waiting in any lineup, supermarket, room, lobby, hallway, or classroom, as people around the child are either waiting for something or someone, or engaged in busy activity or conversation. Your typical child is usually having at least some fun (or making their own fun by getting into trouble), absorbing the new elements of a different environment. Your ASD child is in "dead-time".

4. Dead time also can be that late afternoon time (4:00 - 6:00 pm), when everyone is coming home from school/work, snack-time is on, then supper is getting prepared, maybe the house is getting tidied up a bit. Everyone is a little tired and getting ready for the last part of the day. Your ASD child just finished a therapy session, but no one is "on" him or her on a one-to-one basis. Your ASD child is in "dead-time".

5. Dead time is time that your child spends doing nothing while in transit from one place to another, waiting for something else to happen, or waiting for someone to arrive or to go someplace. Whether or not there are other family members around, there is no one focused on that child -- spending one-on-one interaction specifically and exclusively with that child. There is nothing in the child's hands on which to focus his attention and learning, even if only for a few moments.

ALL dead time is valuable time that should be filled with SOMETHING. ...

How can you fill the "Dead Time" with productive learning for your ASD Child?

1) Make every moment count. Everywhere you go, carry learning items and put those items in your child's hand. Talk or sing about them. Ask questions and if no answer (not able to), then prompt answers or give the answers yourself. If you are really busy, just tell your child to hold on to it, stand/sit down on the floor and look at it.

2) Take a PLAY BOX (toys/books/flash cards, etc.) everywhere - Put one in the car, for sure, but also take several regularly rotated items and put them in your purse or a special bag. The child will see the bag and possibly become familiar enough with it to seek out new items from you while waiting somewhere. This is fun for everyone. In driving long distances, it is hard for most children to be patient and "wait". Driving short distances is sometimes tough, too, and usually there are a LOT of these in a typical family's week. Put a toy or book or single flash card in your child's hands. Make sure that it is stuff that can easily require interaction from you but not be too distracting while you are driving.

3) Frequently change what is in the child's hands. Then s/he can't just get fixated on the item and/or totally bored. When driving and coming to a stop sign, take the item away and put another one in his/her hands.

4) Talk - talk - talk -- about what is in his hands, so there is always some form of communication going, no matter how basic or advanced your ABA Program is at any given moment in time.. While you are driving, talk about the item in his/her hands. Try to elicit a response - ask questions, etc. Ask questions and model the answers/statements so that the child practices language EVERYWHERE at every opportunity. Rotate the toys he/she has at every opportunity. At a stop sign, take that one away and put another one in his/her hands. Then talk about the new item. If there are other children in the car, get them involved in the discussion as well. If there are songs related to the item, sing them all together. Do not put the radio on and say nothing ANYMORE. ...

5) Get verbal interaction going with everyone in the car-- get him to repeat words, answer questions, ask him to point to body parts (or make a game with everyone in the car, someone in a line-up, etc. so that s/he can see and copy -- "OK everybody -- touch your nose, etc.)

6) ... Ask your ASD child "Look at that little girl - what color is her coat", etc. Or get them both to look at something and tell you what it is. This is peer interaction. ...

7) For those busy family times where no one is "on" your ASD child - Admit it. You can't do it, so get someone else on the job. If you have older siblings, assign a rotational 10 minute toy/ play task or some gross motor games (hopping, jumping, tossing). ...

...

(Emphasis and illustrations added)

Autism Diva, seemingly never at rest, just got a copy of a paper in press: Unrest at rest: Default activity and spontaneous network correlations. Buckner, R.L., Vincent, J.L. NeuroImage (2007).

The Buckner paper deals with the idea that the brain "at rest" is really very, very active, and it's doing important stuff. It's consolidating what it's been exposed to previously, and preparing for future demands. The Buckner paper mentions autism briefly and cites this paper:
Failing to deactivate: Resting functional abnormalities in autism by Kennedy et al. This paper from last year found a difference in the way autistic brains act during rest. They seem not to enter the kind of "resting" state of the brain where it's working to consolidate what it is being exposed to. Quoting the abstract of the Kennedy et al paper:

We speculate that the lack of deactivation in the autism group is indicative of abnormal internally directed processes at rest, which may be an important contribution to the social and emotional deficits of autism.

What they found was interesting, but that was just one study and not really conclusive at all. Autism Diva thinks it's safe to say that maybe autistics need a lot more down time in order to process what they are exposed to. It seems unlikely that their brains never go through this "deactivation" where new lessons are set in place.
The above graphic is taken from the in-press Buckner et al paper. It shows that while a rat is moving a certain set of neurons in "place fields" are firing in a particular order, and while the rat is resting, the same set of neurons in fire again, but now they fire in reverse. So it might look like the resting time is being wasted, but it's not. Part of the paper deals with the fact that a "resting" brain, or a "free wheeling" brain might be used to contrast a brain working on a problem while in an MRI scanner, the fact that the "resting brain" is actually working hard in some areas can complicate this. The whole topic of what brain-states one "subtracts" from another state during an fMRI study is VERY complicated and Autism Diva can scarcely grasp it, but perhaps with enough rest she could get closer to understanding it.

This is part of the paper's conclusion, which seems to Autism Diva to be a big deal.

Our fundamental departure from [another group's] perspective is this: considerable aspects of brain activity may be functional, adaptive, and process specific information but may not be directed toward immediate behavior. Studying the activity of brain regions only during active tasks assumes that all neural functions related to cognition can be captured in the moment of the cognitive event. However, some functional processes may have evolved to occur over longer time scales rather than to support immediate task goals. A radical perspective is that such future-oriented processes are the majority of the brain’s function. Perhaps
our recent evolutionary adaptations, having largely solved surviving the moment, now include a great deal of neural resources dedicated to surviving future moments. That is, while we spend critical moments engaging the environment to solve immediate tasks, we spend most of our time directed away from the environment in processing modes that consolidate the past, stabilize brain ensembles, and prepare us for the future. Activity events supporting these functions may be structured in ways fundamentally different from those we have gleaned by studying input–output relations under immediate experimental control. Within this speculative view, baseline activity patterns during rest may be our first glimpse into these processes. (emphasis added)

It's interesting that the Buckner paper refers to "behaviors." It seems to be saying that if you think you can understand what is important to the brain by watching behaviors, you are wrong, and besides that you better be careful about what you assume you are seeing in fMRI scans because some of the cool stuff the brain does it does when it's not being stimulated particularly.

But back to down time in an autistic child's life. It seems that so many autistic "behaviors" are adaptive. That autistics are actually doing them because they help them to survive. Autistics tell that flapping and other self-stimulatory behaviors feel necessary and automatic, they help to tell the autistic where their body is in space, at least that seems to be a common explanation coming from autistics themselves. Autistics are classed by these seemingly inferior to normal behaviors. But what if it's all adaptive? What if the fact that so many autistics crave being alone for significant time periods comes out of a real need for that down time. For Autism Diva, some quiet time alone feels about as essential as air, water or food. QUIET TIME ALONE becomes imperative following a few hours around people or lots of stimulation like at a noisy shopping mall (are there no such things as quiet malls?

Another thing that other autistics have reported is that while they may not understand what is being said by a person or people at the time it is being said, hours later, when alone, the conversations that whirled around their heads unintelligibly earlier come back in an understandable form.

So how important is down time and QUIET TIME ALONE to autistics? It might be every bit as important as time autistic children spend being exposed to new experiences. It would also be beneficial if that autistic child had more control over what he or she is learning, something that is lacking in ABA, where some outside force usually decides what is the next most important thing to learn. There are tales of therapists spending hour after hour, like dozens of hours trying to teach a kid one thing and that one thing MUST be accomplished before anyone allows the child to attempt something else. So who has the disorder here? Who is showing signs of neuroticism and obsessive/compulsivity? Who is merely chasing his or her tail or an illusion of "being helpful." You know, don't just stand there, do something!

Autism Diva spent lots of time with her kids when they were little playing educational kinds of games, playing in sand and on the lawn and stacking blocks and so forth but there never was any data taken, ever. Photographs, yes, proud mom photos of kids, but no data. And there was lots of down time, for both the kids and the mom.

Ivaar Lovaas pretending he knows what a child with "childhood schizophrenia" (autism) needs:


The video is about 4 minutes long and features Lovaas having some problems with making eye contact with the interviewer. Why he wasn't treated for this we don't know.



Autism Diva
at ease