Tag Archives: behavior modification

“Self-Knowledge Avails Us Nothing”

Posted on April 15, 2014 by | 13 comments

There are things I forget to talk about with my daughter.  Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her?  These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her.  This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter.  It doesn’t always occur to me to discuss with her a great many things until I am reminded.   Out of respect for my daughter I am keeping this post purposefully vague.

I am moving along here, learning as I go and continue to make a great many mistakes.  I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do.  I seem to need to repeat the same lesson many times before I am able to make lasting change.  It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge.  I will often know something, yet it will take many attempts before I am able to put that knowledge into practice.  You could say that my actions lag way behind what I know or believe.

In the 12 step rooms there is a saying – “self-knowledge avails us nothing.”  What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave.  The only way to change is by doing something differently.  How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind.  Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc –  we know it would be better if we did whatever it was, only to find ourselves unable to do it.  Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless.  Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.

Change is hard.  Changing the way we act is even harder than changing a belief.  Yet, we expect and ask children to change all the time.  We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why.  Except that they are behaving the way most of us behave.  Adults are no exception to this.  Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop.  Conclusions are drawn, ideas and theories are created to explain, and yet…

Recently Emma was asked about something that happened at school.  She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?”  We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals.  I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are.  These people are rewarded for such behavior!  I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.”  And yet…

Today I will suggest a few topics and ask both my children what they’d like to discuss.

Em & N. ~ 2010

Em & N. ~ 2010

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Posted in Autism, communication, Parenting

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Having to Prove Competence

Posted on October 15, 2013 by | 30 comments

I have always feared being put somewhere against my will.  Sequestered, hospitalized, institutionalized, these are abject fears I have had since I was very young.  The idea that others would have control over what I did, where I went, what I ate, who I saw…  these are more than just fears, they are like nightmares, too horrible to contemplate.  My greatest fear when I went to see a therapist in my early twenties was that I would be put away somewhere, so sure was I that if my secrets were revealed I would be thought too damaged to live among my peers.  I made my therapist promise that if I told him what was on my mind he would never allow me to be admitted to a mental hospital.  It was after he assured me, swore he would honor my requests that I was able to finally begin telling the truth.

On Homeland (the Showtime series beginning its second season) there is a scene with the main character being committed to a mental institution, forced to take medication, her speech garbled and slowed, her facial expressions a slow motion blur of terror, rage and pain, her eyes wild, like a caged animal, while her intelligence burns bright.  The well-meaning staff speak to her as though she were a child, incapable of reason, they tell her to calm down.  They tell her to take deep breaths and count to ten.  They doubt her ability to make decisions, they speak to her in voices cloaked in a calm-like veneer, their irritation still bleeds out, their condescension is palpable, their dislike for this person who is inconveniencing them is still vividly apparent.

And I thought of all the people we have met who are like those well-meaning nurses and staff.  They do not view those who are neurologically different as equals, not really.  They believe they have proof of this.  They do not believe, even though they may say otherwise, that people who cannot speak or who do so intermittently  are competent, capable of insightful thoughts, or have anything of importance to say.  They alternate between ignoring the person, to speaking to them as though they were still a toddler.  They are visibly uncomfortable.  These are the people who have concluded that because someone cannot verbalize what they think candidly and with ease, they must not have anything of importance to say.  Thankfully most of the people we meet who are like this have not devoted their lives to working with this population.

But now and then I meet someone who has.  They believe they are doing a good thing, a noble thing.  They believe they are helping.  They believe that the people they are trying to help are living happier lives as a result.  They believe this with all their heart.  They give words, as though gifts, in grammatically correct sentences, believing people can be trained to say things and do things that will be understood by the majority of the population.  They think that if they can force someone to stop moving their hands or legs or twirling bits of string that the person will be better for it.  They do not consider that this may be detrimental, that these actions are necessary to their concentration, that they will actually learn more and be able to concentrate better if they are allowed to do these things that are seen as unusual.

As I watched Claire Danes in the role of Carrie Mathison, I felt that old familiar terror  I used to feel when I imagined if people knew me they would believe I needed to be put away somewhere and locked up.  I was reminded of all my old fears that who and what I was, was broken and needed to be fixed and that I was not like others who seemed so pulled together, so calm and happy.  On the show, Homeland, the more Carrie tries to convince the staff that she is fine and calm, the more out of control she appears.  Having to prove oneself as competent is a difficult, if not impossible thing to accomplish, if those you are trying to prove to, already have made up their minds to disbelieve.

Em types with Pascal

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Posted in Autism, Parenting, presume competence

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Walk Toward the Light

Posted on June 19, 2013 by | 24 comments

First there was the evaluation.  The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end.  Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions.  Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern.  They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.

Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand.  None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism.  Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”.  Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy.  Her bright future no longer bright, she was categorized.   Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin.  If we were lucky she could be trained.  She could be “modified”.  She was young, we were reassured.  There was still time.  We were congratulated for having caught “it” so early.  Early intervention was key, we were told.  Intervention…

That was the beginning.  That was the beginning.  Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency.  People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought.  Some were more successful than others.  Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?”  and with each, the darkness crept closer, enveloping us in arms of sadness and pity.  The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.

What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark  impenetrable wall.  What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you.   You see, they are coming at all of this from the perspective of their own limited neurology.  They cannot see beyond what they believe to be true.  But there is another “truth” and it is one they are unable to tell.  The words they use will only lead you down a path you must reject.  It is a path that will descend into more fear, more terror.  It will not lead you and your child to anywhere you want to go.  Come with me, instead.  Walk with me.  Walk toward the light.

In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk.  It is with them that I surround myself.  It is with them that I choose to be among, because they know.  They know what it is to be Autistic.  They put beauty in the word “autism”.  It is their faces, their words that I think of when I think about autism and my fear is vanquished.  Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved.   A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.

Walk with me… walk toward the light…

Rainbow Clouds

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Posted in Autism, Autism Acceptance, Parenting

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