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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

Sunday, February 12, 2006

 

The Poetry of Autism

It is perhaps difficult to consider the poetry of autism as my son struggles for air, looking up at me searchingly – “what is happening to me?” He is sick and we are on pneumonia watch. He doesn’t have it yet, but he is very ill this weekend. I write in the darkness of his room as he sleeps, not letting my eyes off him.

I imagine the poetry of autism is similarly difficult to comprehend and a parent watches one’s child bang their head against a wall, or bite oneself in the frustration of not being understood. The following premise “the poetry of autism,” is not in any way to belittle or forget these moments. Rather, I consider that autism, it’s way of seeing and sensing the world, poetic. As I read Donna Williams, Susan Golubock, or Larry Bissonnette, their style of communication and use of written language is plump with metaphor and meaning. In fact, it takes me a few repetitious readings of a sentence or a paragraph at times, to fully appreciate the entire meaning. As in poetry, the language of autism sometimes requires unraveling. The language reads sometimes like stream-of-consciousness writing.


Here is what Donna Williams wrote me in response to Adam’s schedule;

yes, grandparents are really important
Having other attachments
Being flexible about new discovery environments
That’s building WANT and wonder.”


I want him to to have hands on `doing’ based, tactile, kinesthetic experiences with sound, form, line, light, movement, space so he WANTS to talk about, draw, build, compose as expression brewing from these things…if he chases the world, then the potential is great…so activities should inspire, be about DISCOVERY and wonder and one discovers and wonders when the answers aren’t already jumping out at you, then the understanding isn’t `theirs’ its `yours’ and that builds self and a relationship with the external world as `one’s own world.’ Without this, it is `their world.’”


Donna’s grammar is more intact than some. Her writing leads us from one image to another which leaves my head swimming – one has to dive in to her language to understand the rhythm of her world. It is in joining this rhythm that we perhaps catch a glimpse of the way she sees it.

Even more akin to “poetics” is the prose of artist with autism, Larry Bissonnette:

“Casting teepee posts of happiness in the ground of slaves to big accounts will never make your life better.” (Biklen, Autism and the Myth of the Person Alone, p.169)

Larry’s political views are apparent, as most artists struggle between the call of money versus the call for Truth, which is within our grasp, through art.

“Tapping well of silence with painting permitted songs of hurt to be meted with creativity.” (Biklen, p.170)

The phrases ‘well of silence,’ ‘songs of hurt,’ and ‘casting teepee posts of happiness, ‘in the ground of slaves,’ are all distinctly visual and metaphorical images. Silence is a well. Hurt is a song. Teepee posts of happiness can rise and fall. Slaves are often confined to the ground, work the earth, and are as good as dead.

Leaping into stream of creativity prepares artist for partnering technique with passion and dramatic vision of malleable for beauty real world. Same beam of enlightened belief in artist’s abilitiy as is shown on president of nation is required.” (p.175)

If the president could tout the artist’s ability here, acknowledge the fluidity of thought and process, might we be able to change the notions of autism? If we shared the same ‘beam of belief,’ like the light of TRUTH, then it is possible.

My pent-up time in tested for learning patterns of best behavior institution wasn’t entirely greys; it offered personal periods of great relationships with friends with disabilities.” (p.174)

Bissonnette was thought of as mentally retarded so he was institutionalized during his youth. “Tested for learning patterns of best behavior,” tells us that his life was full of tests, and he deciphered through patterns, what was expected of him. When Adam did ABA therapy, he was tested all the time. (I only did so-called ABA therapy for 2 months when we started this journey…thank God.). I could see as well, that Adam could learn the expectation at 20 months, very quickly. But it didn’t teach him anything about his world. James Partington told me once in a conversation over the phone: “all we’re trying to do is teach your child how to respond.” It was that statement that made me close the door to “pure” (whatever that really means) VB and ABA forever. I didn’t just want to teach Adam how to respond, I wanted to teach him how to learn for himself, enjoy the world, garner what he wanted from it, and I still believe and see through him that this is possible for all people with autism, and is happening for Adam.

Past life of institutionalized person lets in novel ideas. Outsiders to this life can’t go out and obtain it. It’s significant that my artistic style lets me express personal perspectives of autistic but intelligent old Vermonter.” (p.177)

Indeed, Bissonnette is an intelligent “old-Vermonter."

Producing art is like making puppets on strings because massive edges of inspiration in creating graspable figures get constricted by people’s patterned control of sticks put on strings. Not allowing people with disabilities their patterns of inspiring art through total freedom of expression is like limiting creativity with censorship.

Artists like Larry urgently make situations of doing art into large statements; occupying worlds of public awareness; calling for justice for people without speech; praying for true freedom of splashing language over pricey spreads in people beautiful but superficial magazines; moving down stereotypes of disability and leaving people speechless over power of brushed on with wild, outside the mainstream ideas, steeped in the tradition of autistic compulsivity.” (p.179)


And,

Look up early lessons in learning about my struggles to communicate and determination of others to make me learn to eat neatly and talk clearly was really most important factor in my rostering of skills. I am seriously past learning swimming in the shallow end of the pool of language but I am ever told `can do’ words by others like Aunt Theresa and that is the sled that pushes me to accept excellence over languishing in mediocrity.” (p.181)

Needless to say, we as parents should accept this kind of equality for all our children, no matter what type of disability obstructs. There is not one person with autism who hasn’t told me that there was someone believing and pushing them to succeed (and that success is different for everyone). It is the parent’s will to accept this equality of excellence, meaning that we all have a right to work towards and attain it, to accept and believe that everything is possible, even with children who have been diagnosed at the “severe” end of the spectrum.

“…I’m not asking that life’s expectations
be changed for me.
I seek only acceptance for the ways I choose to meet them.
Remember what gives joy to you
is often very uncomfortable for me.
The way you would do something
is often not the way that would
enable me to best succeed.
Or more importantly
find pleasure of self-satisfaction
in what I might accomplish.
I don’t experience loneliness
or have the same needs and wants that you do,
so don’t pity me for not having what I don’t miss or want.
I recognize that your life,
with all its complexities
has its own set of difficulties.
Your definitition of accomplishments
and what you find encouraging
go beyond the simplicity
which defines me.
I’m only asking for the same rights
and freedoms you seek for yourself:
To be accepted for who you are,
To be the best you that you can be.
Don’t assume that I want or think or experience
the way that you do.
As nice s you think it is to be you,
I only want to be me.”

----Susan Golubock from “Our Lives in the Universe of Autism,” Women from Another Planet, pp. 70-71

That, my friends, is the sum of all these parts.

5 Comments:

Blogger Kristina Chew said...

Hope Adam feels better soon!

11:03 AM  
Blogger Estee Klar-Wolfond said...

Thanks...we went to the doctor and he has the croup...he actually couldn't breath just when we got there. Hope these eases up.

Estee

2:28 PM  
Blogger Kristina Chew said...

Charlie had croup all last week and is still coughing, esp. at night. (He sounds like a seal.) Did nothing but sleep for a couple of days.

Regarding autism and poetry, Charlie often has a "metaphorical" way of communicating, esp. through his actions, and his interest in colors and patterns. One word can evoke a strong response from him: "Schoolbus" means a lot more than just the word.

3:23 PM  
Blogger Estee Klar-Wolfond said...

Absolutely. Infused with associations -- always more than meets the eye.

6:07 PM  
Anonymous Anonymous said...

I have a 7 year old gret nephew who has autism, so I know how the families feel with disablity. It is not easy for any families. Even thou that my nephew has autism I still love him very much. Sp lets keep all the Joushas, Alice's, Lehigh's and all the children with autism in our herats and prayers.

2:34 AM  

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