How it started
I have (reluctantly if I may be truthful) somehow always found myself involved in causes related to mental retardation. My stepmother was a change maker in the field of mental retardation. She was the founder of a group that took mentally retarded young adults (back when they were called mentally retarded and not mentally disabled) on vacations to places like Disney World. This was before the integration of mentally disabled persons was common and many of them had never been on a vacation before.
She also fought, and I do mean fought (there were organized protests against the idea) to establish group homes for mentally retarded individuals in local residential neighborhoods. At the time, I didn't realize how brave my stepmother was. I would go to work with her and help as a teaching assistant in classes for mentally retarded children. I would go home at night thinking, "How do the parents do it?"
And then it was me
Before autism was so commonly diagnosed my son visited pediatric neurologists, MD's, pediatric opthamologists and other professionals in hopes of explaining his strange behavior. All scratched their heads in puzzlement, as my son could speak a bit and he obviously enjoyed being held and spoken to, contrary to the image of autism the doctors held at the time-that of an unreachable child incapable of forming bonds with caretakers. My son's behavior history was complicated and chaotic. He had completed certain milestones right on schedule, and others were skipped completely. He went from never crawling to walking. He went from never speaking to a three-word phrase ("It's all gone") All the while screaming, biting, pinching and having tantrums not daily, but hourly. He never spent a complete night sleeping, but would wake at odd hours and go into the kitchen to methodically pull the labels off of cans or spread flour onto floors or countertops. My home was toddler-proofed and child-locked and yet he still managed to leave the room looking like a family of raccoons had broken in. The pressure never ended and I am not sure how I lived through it.
A chance encounter with a book provides clues
It wasn't until I picked up a book at my local library just to read, nothing more, that the mystery was solved. I began reading the first page. Then slowly sat down and read the entire book over the course of some hours, crying at times because finally someone else described my son and what it was like to live with an autistic child. At the time, my arms were always scratched and bruised as my son lashed out in frustration of not being able to tolerate sensations too raw for him to bear-temperature change, sounds, and most of all, changes in routine. In the back of the book was an 800-number for a national autism group (this was before the World Wide Web), which I called first thing the next morning, trying to speak to the kind woman who answered through a throat strangled with tears of both relief and also great grief. The woman asked where I lived and suggested I seek a true diagnosis so I could get my son into an appropriate learning environment.
The diagnosis
Off to (a university near my home) for an evaluation we went, but only after a long drawn-out battle (the first of many battles with red tape) with DenialCare Insurance Company. The battle ended with a personal call to my home from the president of the company, reluctantly agreeing to foot the cost of the evaluation. I didn't win them all, but that one felt good and I learned how to negotiate and win against large entities with way more money and education than I possessed.
After a ten-day on site evaluation the diagnosis was clear and I was called to meet with the staff to discuss the findings.
Autism
He tested appropriate to his age level in some areas and some at the level of a toddler (he was seven) We sat in chairs placed in a circle as each expert read her bit of bad news. A social worker was required to be there. She cocked her head in sympathy and said "Mom, how do you feel about what you are hearing?" I just turned away from her, and continued asking questions of the rest of the panel.
But she would not drop her efforts to justify her presence in the group, asking again "How does this news make you feel?"
"How do you think hearing that your child that you brought into this world will never live on his own, will never marry, will never drive a car, will never hold a job, and will never have a child of his own, feels?" I still burn at the simplicity of her question in the face of such a dire and complicated diagnosis. This would not be my last encounter with people like this social worker, who rely on rote to avoid painful truths. I am not sure what she expected with her question.
In any case, after the meeting, I had some decisions to make. Medication for my son was suggested. I was warned that if I did not get these harmful behaviors under control now, my son would be "chemically straight-jacketed" as an adult. I became a reluctant student of behavior and sought help immediately from behavior specialists. I was very very lucky to live in a state where such options were available. My son now lives in a house with other autistic adults, supervised three to one (some homes require one to one supervision so I take this as progress) and holds a simple job in a place that uses respect and kindness in all of their interactions with my son and the others like him. No force was ever used to change my son's behavior. I chose to not use medication as none existed that showed true change, but rather worked by blanketing impulses.
"(insert some dire outcome) will happen if we don't use (insert some force based method)"
I look at it another way. The behavior of the learner may indeed be stopped more quickly (not changed, mind you, but stopped) if I would use force, but I would also be changed. And I am not willing to undergo that transformation. Management, reinforcing behavior, setting up the environment for success-all may take more time than using force but I will consider that time well spent.
I have done things I am not proud of; I have not been perfect. But I hold one thing close to my heart, as evidence of good:
There are people willing to work to change behavior using kindness and respect and that makes the world a better place.
"If we hit hard enough, we clear a little place in the wilderness of civilization, but we make the rest of the wilderness still more terrible" ~ BF Skinner
Related Reading:
http://www.prisonexp.org/
http://www.tagteach.com/
"Don't Shoot The Dog" Karen Pryor
