Tag Archives: therapy

Having to Prove Competence

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

Autism “Experts”

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle