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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, January 30, 2006


On Becoming a SELF

"Wa wa..woo. Wa Wa...woo." Adam's hands open and close to his own utterance of "quack quack..ribbet. Quack quack...ribbet," like he's using his hand as a puppet. In fact, on a Baby Einstein video, there is a little performance by a duck and a frog. You too might be intimate with this little act if you've watched Baby Einstein as much as we have in this house. I digress. The duck and the frog do their little bit until ALL OF A SUDDEN, the duck ribbets, and the frog quacks! Adam seems quite amused by this little interchange. So much so, he has enacted the scene with his very own hands.

I have a little theory. (I have many about autism, but I'm not autistic just a very close observer). Adam seems to be talking to his hands at times. Sometimes his fingers do a little dance that wiggle in sync with Mary Had A Little Lamb, and other times, his hands open and close like those puppets to various dialogue. The obvious insight is that Adam has taken the scene and adopted it himself..the first stages of pretend play. But the real a ha for me is the realization that his hand is an extension of himself, let me press, could at times EVEN BE HIMSELF as he sees himself. "Body awareness" is difficult, it is said, for people with autism. Tito Mukhopadhyay says it took him years before he realized he had a body. He discusses that he wondered if he lived just in his thoughts rather than in the physical world. Adam can see his hands. It is easier for him to imitate with an object, for instance, than it is with his body alone. I see Adam's hands and simultaneous dialogue a little deeper than sheer stereotypy. I see it as his pracitising dialogue and speaking through his hands. If he can't SEE himself talk, perhaps it is easier for him to WATCH himself through his hands. I consider that like an actor, who projects a character that is not himself, does in fact REFLECT his own true character. The PROJECTED OTHER and the SELF are entwined.

Projection/reflection through puppets is a technique often used with abused and traumatized children. It is easier for such a child, perhaps, to enact a scene without having to identify one's true nature, or character. Children often draw scenes to communicate because it is often to do so verbally, especially painful experiences.

Adam is projecting, practising, through his "characters," the duck and the frog. He is practising language. I am wondering that to talk to his hands, if he feels more grounded, more aware that HE IS HERE.

This is abstract stuff. I have a wonderful new supervisor who is BCBA but also has a Ph.D in sensory issues. I find her very sensitive to Adam and useful in the sense that Adam really wants to learn new skills now and she is doing a marvellous job with him - just one of those really good, intuitive teachers who has a little extra knowledge. Originally, the type of ABA, and later, VB we received was distasteful to me. All these so-called "experts" treated Adam as a pathology. No one seemed to understand that at 20 months of age, he needed to be happy, to play and understand the value of relationship. After I fired a bunch of "supervisors" Adam still learned skills all along the way because I believe that through his joy and learned ability to relate, he became able to express that he wanted to learn -- express his intrinsic motivation. Now, for things that are tougher and more demanding, I searched for a very skilled and sensitive person to join Laura (one of Adam's therapists) and the team to provide additional advice and training. Ms. Doc (I don't mean this is a deorgatory way -- she is a lovely person but I don't want to disclose her name for her sake), has said to me many times "stereotypy is Adam's enemy." I don't necessarily like to coin it this way myself. In a way, I can definitely see how Adam stops learning if he engages in too much self-stimulation (I'm talking during learning time here, not when a person needs to wind down). However, I still feel strongly, that "STIMS" can serve important functions, which is why I watch him carefully and question. Is this something that Adam needs to explore or this an obsession? The lines are never clear, nay, always shifting.

Last night, five of us were sitting at the dinner table. Adam was tired and we were all chatting away to each other until he said loudly and clearly "Quiet please!" in a firm but polite tone. Indeed we all quieted down and ate our dinner. (!!!!!!!!!!!)


Blogger SquareGirl said...

I see stims as purposeful, used to unwind (which is why "stim" may not always be the most apropriate word), to decompress, to tune out too much sensory information, to stimulate parts of the brain that otherwise are unstimulated, and to learn at times. I don't think they are the enemy, yet like you I feel that stims need to be redirected when it is time to learn. I always question consultants when they insist on stopping all stims in others...I have yet to get a very god answer.

I love that Adam was able to express his environmental needs to you! And love that everyone respected his words!

6:01 PM  
Blogger Autism Diva said...

Thank you. Thank you especially for" keeping in down to a dull roar" at the dinner table. :-)

Technically, an obsession is only a perseveration that causes the person who has the obsession some kind of inner distress.

This definition was given by Dr. Peter Szatmari to differentiate between perseverations (a thomas the tank engine collection) and an obsession (compulsion), needing to check to see if the door is locked 50 times in a row.

Clearly people with OCD are distressed by many if not all of their obsessions and compulsions. But on the other hand, autistics are not ever (to my knowledge) distressed by their perseverations, on the contrary they love them to bits.

Something to think about.

Thanks again for the nice blog entry.

6:56 PM  
Blogger Estee Klar-Wolfond said...

Do they? All the time? Dr. Susan Bryson noted in one of her presentations that studies have shown that people with Autism get "stuck." This stickiness (i.e.; inability to move from one stimulus to another) prevents the person from moving to the next stimulus even though they are aware that the stimulus is there.

I think, from what I've garnered so far, that some preservation is comforting, but on the other hand, there can be stress on the part of the person who can't "jump in."

It's an interesting topic and not one I can profess to be any kind of expert on... again I'm just trying to be the best interpreter I can.


7:46 PM  
Blogger Kristina Chew said...

I see stims as part of the neuorology of my son, as what his wiring is. They can easily get in the way of him learning and growing but that part of him that latches easily onto repetition and routine can be used to help him learn: Household routines and tasks, for instance, or the steps in a process, in some activity (cooking) that has a particulary sequence.

2:37 PM  
Blogger Zilari said...

Stims do serve a very important function. For me, they are usually a way to "defuse" sensory overload in a manner that is much less disruptive than letting things build up to a meltdown. They can also simply be atypical expressions of happiness or excitement -- I will most certainly flap my hands if I am very gleeful, and I don't see how this is any more strange than laughing or smiling or skipping.

However, there are times when I find myself "spacing out" by doing some sort of repetitive thing (like playing with a paper clip to the point where nothing in the Universe exists except for me and the paper clip), and in these cases I generally have to make myself just drop this activity and return to working or whatever else it was I was attempting to do. There is a cost to this, though...because frequent spacing / stimming generally means I am exhausting myself.

I have chosen in some cases to make a trade: I will refrain from spacing out in favor of getting something done, but since there is no such thing as free energy, I may need extra recovery time later.

This is a skill that I have had to learn: it's basically the same thing as delaying a nap or a snack until one has achieved a certain number of things on one's checklist. At least that is how I see it.

It is not the stimming itself that is a "problem" -- it is that frequent, sometimes-involuntary stimming sometimes indicates that I am getting too tired or worked up but not consciously able to recognize this.

Also, Autism Diva is correct on the distinction between OCD obsessions and perseverations...the former is unpleasant to the person, whereas the latter is utter delight.

12:38 AM  
Blogger Estee Klar-Wolfond said...

I will rethink my use of the word "obsession." I hear it so often used even by people with ASD, so perhaps it is a misused word in this context.

With thanks!!

8:00 AM  

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