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Tuesday, August 5, 2014

What does Janey think about?

Of course, we never really know what anyone else thinks about.  But with Janey, I have no inkling at all.  She never refers to past events.  She never tells me what she does when she's not with me.  She has never told me a dream.  She's never told me about a disappointment she felt.  She's never said what she hopes the future holds.  She's never even told me the little things, like what her favorite color is.  Her mind is a mystery to me.

I get glimpses of Janey's mind only by her telling me her immediate wants, and even those are limited to a very few categories---ones relating to food, videos, going outside or in the car or wanting someone to lie down with her or go away from lying down with her.  I know what foods she likes and what movies she likes.  But I don't know if she likes school.  I don't know if she likes certain kids her in class better than others.  I don't know if she wishes she could talk more, if she wishes she could read.  I have no idea.

I often look at Janey's face, trying to figure out what is inside, in her mind.  So often, her face doesn't let those secrets out.  She so often has what I think of as her reserved look.  Some people call it an autistic look, and indeed, it's a look that I think is common with a lot of autistic kids.    It's a guarded look, a look that seems to be designed to keep her safe from being asked to do things she doesn't want to do, safe from well-meant but invasive demands--- "Look at me!  Tell me with words what you want!  Tell me about school!  Answer me!"  It seems to be a way she retreats into herself, closes herself up.  Maybe autism is the ultimate way of wanting privacy---she keeps her counsel.  But oh, how I wish she would, or she could, let me know what she is thinking, even just a little.

4 comments:

David Fee said...

That one hits close to home as I can never figure out what my daughter is thinking beyond her short-term wants. The most telling one to me is "I don't like that house (the daycare)". She never tells me the names of her teachers or classmates. Doesn't say if she's happy or sad.

Some people claim autism is just another way of living and who's to say if autistic people aren't really enjoying themselves even through don't express it in words? Our ability to express ourselves is what makes us humans who can relate to each other. It would be nice if my daughter could sign, write or use a keyboard but she can't yet. She knows A-Z, can make the sounds of the letters, can id them and tell you a word that starts with a letter so maybe she can eventually read or write. I sometimes get choked up when she can identify something I didn't think she'd know. I know there's devious fun-loving girl behind those blank eyes. I'm going to keep peppering her with questions, directing her attention, showing everything that she can absorb in hopes that some of it is making backup connections in her mind.

Unknown said...

Suzanne, perhaps she is not "thinking" but "experiencing" . Experiencing sounds, movement, colors, heat, cold, textures etc., reacting to these sensations with her stims, word repetitions, singing, screaming etc., while not consciously doing so. I think this aspect of autism is referred to in The Reason I Jump. She lets you know if she consciously wants something and you have learned to interpret her methods of telling you.

I guess I am trying to say that if the autistic brain is wired differently than the non-autistic brain, why would we think the autistic person "thinks" like we do?

Your precious girl is still growing, developing and gaining skills. If you can, wait for the future to evolve.

Ann G in Canada

Unknown said...

This is a good post. I always think autism is just a huge shell. A shell that hides a whole lot. There are many kids who are so severe and socially aloof that people think there is nothing going on in their heads especially when there is no communication. Then these kids learn to use sign language, type on a tablet, use a letter board and all of a sudden it's like they know a lot! A lot more then any of us realize. It's just trapped behind behaviors and their unusual emotions.

Everybody thought Age was really intellectual impaired. Lots of behaviors and always angry. No communication and just appearing like she rather be left alone then engaged or interacted with. And when I say always angry. Literally always. Every now and then would laugh or seem to be enjoying what ever was going on but seemingly always with a angry mug or blank face. Never cried or was sad. Just aggression, self injurious and angry. It wasn't until she was a teenager around 16 or so and started typing and would type poetry. It blew everybody's minds. She had real wisdom and thoughts inside nobody knew. Still impacted by autism, still had that mean mug or blank face but we learned had more emotion and thoughts then anybody could ever imagine. I've seen many stories like Ages where once they start typing it makes you realize what you see is nothing like what's going on inside their brain. Remember even reading two individuals with severe autism and explain why they couldn't use the bathroom. Blew me away. One described it as a sensory problem as they could not feel when they had to go. It was interesting.

Colette Knight said...

Hello Suzanne

My Janey is called Ella, and they sound like kindred spirits! Pretty uncanny really...as your thoughts and observations resonate deeply. Ella is currently wrapped round me asleep, while I wait for the breathing to indicate I can slowly extricate myself... She's 13, and super anxious at the moment. Constantly asking for "school bus", but unable to comprehend when the end of the summer holidays are, what exactly I mean by holiday (we're British btw!) and why her routine is shot to pieces.

Ho hum..... ! Nice to meet you and Janey, though! X

Colette