Susan's Blog

Monday, June 5, 2006

Autism and Will

Autism is not, as so many think, about not perceiving the existence and or importance of other people’s minds. Although I know and respect Simon Baron-Cohen, I think he got this a little backwards. For this neurotypical mom, autism can be more accurately described as an ongoing struggle to get my child to understand that he has a will and a mind of his own. I experience Nat’s autism as an extremely passive existence, whereby he is so unto himself that he does not realize his own power. He also seems to attribute far too much power to me. I first understood this when he was a little guy, and did not know to ask me for juice, or did not know how to ask me for juice. He learned to say, “Want juice?” as a question, in effect imitating me so that he would get what he needed, which when you think about it is an ingenious adaptation. The autism experts explained to me that this is echolalia, a “problem” or “symptom” of autism.

I used to think of Nat’s echolalia and silence as the relatively simple problem of not knowing how to ask; increasingly I believe it is that he does not know to ask. I think that the latter is a far larger problem than the former. One can be taught various means of getting words out, whether by signing, typing, using pictures, etc.

But how do you teach someone that they should get words out? That they should do something, for their own good, to fulfill their own needs?

I remember sighing to Ned that I wish I could get Nat to understand that playing with toys or other people was not just something I wanted him to do but was something that he wanted to do. Yesterday, Nat pinched both Ned and me because it was raining out. In this way, he still insists that we are in charge of everything, from the weather to when or what he is going to eat. I believe that this is a manifestation of the same ultimate passivity, or of being so completely unto himself that he does not perceive his own separate existence, will, and ability. Or perhaps passivity is not a good word; perhaps it is more the existentialist “en-soi,” the being so completely what one is that the quality of your very consciousness is different from others. Because I am aware of causation and my limitations as well as my strengths (at least, compared to Nat), I don’t blame other people for the shitty weather. I know to help myself whenever I can. And usually I know when that is, but not always. Nat, on the other hand, does not seem to know any of this.

These days, Nat will not ask for anything without a prompt. The ABA-ists will state simply that Nat is “prompt-dependent.” Perhaps there are techniques for “fixing” that. But perhaps it was the ABA that strengthened this tendency in the first place. Nat, who began life as someone so utterly within himself, has become so used to our structuring of his world that he may be incapable of structuring it for himself.

I am not blaming ABA. I think that this is an educational technique, like all the others, that helps teach people certain skills. But the fatal flaw in ABA is that there is this magical fade-out of prompts, this expectation that there will be a leap from the specific skill acquisition to the general. But the leap from specific to general is a huge chasm for Nat. I now think it is the same underlying problem, the leap from feeling something within to realizing that he can be the master of his world.

More mundanely, I am now considering placing simple reminder cards all over the house that read like this, “If you want to eat, go to the refrigerator or the cabinets and make a choice;” or “If you are bored, you can choose an activity, like listening to your Ipod, scootering, reading a book, watching t.v.”

Anyone else have any ideas?


My son is the same way — he’s eleven— although he will ask for things but they are the same things over and over again and they do not necessarily correlate with what would be good for him or what would help him learn or progress. After attending a day school that used ABA, he is now in a residential school (that does not use formal ABA methods) and when he talks to us on the phone he needs to be prompted to ask us about our day or tell us about his day. Otherwise he will perseverate on our next visit, going to a certain movie or restaurant and will not talk about anything else. I sometimes wonder whether he has an original independent thought or if he only is susceptible to suggestion from others. The people at the school assure me he does think independently at least a little. The problem is his interests are so narrow. He, too does not seem to know how to decide what to do with down-time so he often gets upset and demands adult attention. His will is strong for certain preferred activities but his will seems to be non-existent at times for the things that children need to do to get to the next level in becoming more independent.

— added by Anonymous on Monday, June 5, 2006 at 7:47 am

Skillful fading of prompts is a tricky thing to do and is often done poorly—–we’ve found that verbal prompts are the hardest to fade out and often use picture schedules, activity schedules and very light physical touch (that can be faded out) to help Charlie. He has received ABA from numerous providers and not all have the same knowledge of prompts, prompts fading and reinforcement. Charlie’s will is as big as the next 9 year old’s—by keeping him motivated and engaged, he is learning to direct his interests in numerous new directions (as of this weekend, the piano).

— added by kristina on Monday, June 5, 2006 at 8:38 am

gee, i’m not sure but what if you start using a bunch of declarative language in the house and around Nat to see if he begins this himself at all. it’s an approach that may take a long time before you see if it helps. try making statements at least 80% of the time and making imperatives only the other 20%. as an experiment, try not asking one question for 30 minutes and only making statements, even if they are ‘cheater’ statements that start with ‘i wonder’ and include one very outlandish idea next to a reasonable one. like, if you notice Nat is thirsty (not sure if this would work since i’m not sure what Nat does other than ask if he is thirsty or hungry or wants to go out) you could say, “hm, i’m really thirsty. i wonder if i should have a drink of water or a bite of a shoe?” or, ‘hm, it’s raining out. i wonder if i ought to wear a raincoat or a rubber band?’

not sure if i’m making sense but i do know that lots of families that switched to RDI with it’s focus on developing minfullness and the ‘internal supervisory system’ from the ABA they had used and found it made a big difference in getting their child to begin to think of their own.

— added by kyra on Monday, June 5, 2006 at 9:07 am


I think your statement “get my child to understand that he has a will and a mind of his own” is key. Believe me, it is a wonderful thing to see that lightbulb go on, when your child seems to “all of a sudden” realize that they are an individual and independent. Of course, this means that we as parents must now deal with an independent individual of a child who may not always agree with us in how to exert that independence.

But that’s what parenting is all about, isn’t it.


— added by Brett on Monday, June 5, 2006 at 9:24 am

I remember sighing to Ned that I wish I could get Nat to understand that playing with toys or other people was not just something I wanted him to do but was something that he wanted to do.
It’s in this one area of my own life that I think I’m closest to actually being autistic (unless Asperger’s is autism by definition). When I was a child it seemed to me that my parents and teachers were always making assumptions–which struck me as necessarily baseless and usually clichéd–about what I wanted to do: play on the swings, get ready for school, etc.
What made it worse was that, like the first commenter, they (teachers and babysitters especially) so often seemed to confuse what I supposedly wanted with what they thought was good for me. From my point of view, obviously no one could really know what anyone else wanted (though with experience one could make a guess), so I took this kind of prompting as a shallow attempt at manipulation. As late as seventh grade, I remember answering a harmless substitute teacher’s perpetual “Don’t you think…?” questions (“Don’t you think everyone should return to their seats?”) with an enraged, “Who are you to tell me what to think?” I was perfectly serious.
The fact that the grownups were so often right about what I wanted, at least once I thought about it, I ascribed to their much greater experience. The mirror-neuron theory gives me a satisfying alternative explanation: if most people can simply look at someone and tell what he or she wants, feels, and thinks (at least approximately), then phrases like “I experience Nat’s autism as an extremely passive existence…”, which would once have antagonized me, make sense. You can, sort of, experience someone’s autism.
To this day, though, I have nothing like a direct sense of what it’s possible for a human being to want. I always have to think about it, to speculate and guess. And it still seems almost incredible that this is not true of most people.

— added by Dell Adams on Monday, June 5, 2006 at 3:21 pm

Does he have a PECS choice board using pictures or words(if he can read)? Was he taught picture exhchange? If not, a good Speech Pathologist can help with this. First start by placing the picture of the desired object at the location (ex. picture of drink on refrigerator, cookie on cabinet where the cookies are, etc.) and start by prompting him (physically) to hand you the picture with eye contact. Then once he can do this, have him exchange the picture also using the verbal request. Then fade all prompts (very important to know how to fade prompts) until he spontaneously does this. Once he can ask for many items, put all pictures in one location on a choice board or PECS book. This will teach him to spontaneously know and ask for what he wants. If he has already learned this and now seems to be waiting for prompts or to be asked, it may be that some people in his life are inadvertently prompting him. Everybody in his life (therapists and family) has to expect that he needs to spontaneously think of what he wants and ask. Consistency is crucial. Also, an excellent book that will help you to know how to teach more intraverbals and spontaneous language is Sundberg and Partington’s verbal behavior book, Teaching Language to Children with Autism or Other Developmental Disabilities. Additionally, good verbal behavior is carried out throughout a child’s day, not just for an hour or two with a therapist. The entire family can be trained to require spontaneous language out of him before he gets anything.

Also, I think this would need to be taught and mastered before utilizing what Kyra suggested. Her child is clearly fully verbal, and many of our children are not.

Does his school us the ABBL’s? This should be used to determine goals and objectives (in addition to his evaluations.)

— added by Anonymous on Tuesday, June 6, 2006 at 7:02 am

I once taught an echolalic student to use speech for purposeful communication – it was as if she had no idea what the purpose of speech was. Her family had decided that, being severely language impaired, she should learn English only. But once she began to acquire English, she suddenly began to pick up their native Spanish as well. She made the connection that directing the words at people got them to respond to her.

She used very interesting language too – to request time on the trampoline, which was out in the hallway, she once said, “I want ‘open-ya-door’.” I didn’t understand at first, then realized that I had been saying, “Okay!! Open the door!!” as we were heading into the hallway. She overgeneralized the command to mean “we’re going to the trampoline now”, and undergeneralized to situations in which the door could be opened for any reason. I realized that we had to work all of this into her ABA program – quite a tall order. I would have needed a flowchart that flowed across the room to explain it all.

— added by Lisa on Tuesday, June 6, 2006 at 5:21 pm

Ben is quite passive, or ‘sweet’ as one friend calls him. And if I don’t feed him, he won’t feed himself. In his echolalia, when he was younger, I felt he was just repeating what he heard, word for word, although he might not have even understood it at the time. (“Do you want juice? Just say yes or no!”…”Yes or no”)

But the weather thing you talked about, and Nat getting angry because he thought you caused the rain reminds me of reactions my son has had in the past. Once he slipped and fell on some water on slick tile near the front door. He fell HARD on his bottom. When I asked if he was alright, he said, “You did that on purpose to hurt me!” The angry/hurt look in his eye said it all.

I don’t know what the answer is. In “Exposure Anxiety: The Invisible Cage” Donna Williams talked of how she could not even prompt herself to go to the bathroom at times unless she saw someone else on their way, and then she would race to get in before them. Is it the visual cues? Maybe.

— added by r.b. on Tuesday, June 6, 2006 at 9:12 pm

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