Open Arms

Recently, I’ve been writing about how friends and family had treated us, with good or innocent intentions, however thoughtless, in an honest vein. I’ve been talking about acceptance to the point where advocacy pools us all into two camps: the curabies versus the neurodiversity types. Sounds like teams for a Harry Potter quidditch match.

The term acceptance is being interpreted as a do-nothing approach in a culture that needs to do something for just about everything. Depressed? Take a pill. ADD, take another pill. Epileptic? I’ll continue on that one in a moment. Pills are a matter of choice. I do believe that there are people who really need them. I also believe that we live in a culture that over-prescribes them. I’ve listened and respect people’s choice to take them temporarily, permanently, whatever. I ask you all, however, to consider the bigger picture for a moment.

All parents (I say this loosely – there are parents who abuse their children), want the best for their children. When confronted with the term autism, there is little chance for a parent to trust themselves and not be swathed in fear. There is an entire culture and history out there that has helped construct that, so I understand that it is extremely difficult for parents to steer away from wanting to “help” their children.

When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.

I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself, after hundreds of hours of reading and attending conferences. I really believed that the answer to Adam’s autism, to his progress, was out there somewhere, extrinsic of me. I believed that we needed to impose forty hours of therapy and usurp our family life, and that the pay off would be an end to his autism, or at least make him “indistinguishable from his peers.”

It wasn’t until I read books by people with autism that I began to view autism differently. I agonized over all my choices and prejudices about autism. In this world that also doesn’t support parents very well, it is very difficult to stand on one’s own and not listen to all the things other parents are doing and think you are not doing the best for your child. A parent tends to worry about what they’re not doing.

The odds are really stacked against parents. Our idea of “normal” is an historical construct (see previous posts on this) beginning in the mid-1800’s with Charles Darwin’s survival of the fittest theories. Karl Marx supported ideas of the perfect man in outlining ideal physical attributes of the worker, which was the basis for socialism – an average. We began to construct hierarchies of preferred traits as history continued with its evil side culminating in the Holocaust. Today, these ideas carry over into a consumerist culture, with a billion dollar industry invested in ideas of human beauty and perfection, leaving us otherwise in debt and continually miserable. We fight fat, we fight disease, fight ourselves, and what? Fight disability? There is a lot of effort in fighting and it leaves parents empty and exhausted, not to mention consigns our children as innocent victims -- there is always an innocent victim in a war. How do you think this has effected our quality of life? Isn't it time -- and perhaps we are on many levels now -- to re-define what quality of life is not only for us all, but for people with disabilities?

The anonymous commenter of yesterday's post, who believes autism is the evil taking away her son, feels that acceptance is synonymous with doing nothing. She further makes a fundamental mistake in believing, as a result of a culture that supports her in this false-belief, that autism is the enemy. For the rest of their days, her child will feel that there is an enemy within, and both of them will be forever miserable. People will offer diets and pills, but the autism will still be there.

False-beliefs need to be corrected, and parents who feel this fear might just need our open arms. This is not an attack by any means. It is a comment that there is a prevailing attitude that is harmful to all people with disabilities. There is a marketing machine of research and pharmaceuticals that need to take more responsibility for their ethical mistakes.

This afternoon, I met with JoAnne Dahl fro Uppsala University and Dr. Emanuel Shapiro a psychotherapist from New York who has written books on relating to patients. JoAnne was giving a presentation in Toronto today about,Acceptance and Commitment Therapy (Stephen Hayes, Kelly G. Wilson, Kirk Strosahel) and I received a call to go and speak to these two scholars today. The idea (and I haven’t yet read the book), is that when we have to understand our preconceptions in the way we look and judge people, overcome them and accept others as they are. Once we accept ourselves and others, we make a commitment to support them. I learned from Joanne that some epileptic seizures can be controlled without medication, that children often have seizures because it is a way to avoid physical abuse, a way to stay home with their parents, or a means to feel good. Through acceptance, and working through the barriers to it, the seizures can be controlled by the epileptic person. If this is true, it is an interesting study about non-acceptance and frustation and anxiety. Please note that I am not supporting this theory before investigating it,but want to mention it as an interesting piece of information that was given to me today, and we can all investigate it further. I know little about epilepsy and in brief investigation, have come across papers about techniques for self-control of seizures. I invite others who know the science better, to comment.

I was asked at Adam’s school today by another parent who reads this blog, “How do you do it? How do you just not listen to all the diets and therapies out there?” Did I manage to look at things differently in my art-history classes when we turned paintings upside down to see what we otherwise couldn't right side up? Or was it my philosopher-father who taught me that for every belief, there is an equally compelling other that taught me to question everything? Whatever the reason, this is not about keeping up with the Jones’ anymore. I really care about my son’s wellbeing. I read as much as I can, with whatever energy I can muster in between playing with Adam, and lately, teaching him on the computer – something he has lead me to. I have chosen to view his so-called “behaviours,” as functional needs, his “obsessions,” as interests, and remember how Dawn Prince-Hughes had to repeat words of things so that she could absorb them, or how Zilari’s father fostered her interests by feeding them even more. Adam’s latest “obsession” with calendars has enabled him to type the months out on the computer, and soon, I’m sure I can teach him more about the calendar and how he can use it. If I had viewed all of these obsessive interests as dysfunctional, or strange, I could never nuture Adam's potential.

If I have to rely on the DSM IV, I would otherwise view all of this “stereotypy” as dysfunctional because it seems foreign to me and what other children do. Aggressive behaviour is always a function of non-acceptance and often, frustration. When Adam becomes angry with me, it is usually over something that he can’t do when he really wants to – like writing when his hands are not mature enough to hold a pen well. If I choose, as I’ve learned from autistics like Dawn Prince-Hughes, Zilari or Donna Williams, to understand Adam’s learning style, his perceptual differences, he processing differences, and his sensory differences, and respect them, I come to learn how unique he is and this stuff doesn’t seem that odd at all anymore. Sometimes, we just have to go into someone else’s world to understand them. I try and do this with Adam every day and I believe it can be done in every world, one that seems even more foreign than Adam's.

Acceptance is a commitment to your child. To love them forever, to find joy in them, to believe that they have every ability to learn. If we believe this, we can begin to build and provide the supports they need to achieve. Without it, our children will forever be subject to discrimination and closed doors. A pill won't open them, I assure you. Autism is forever.

To walk in another man's shoes always leads us down the road of compassion.