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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

Tuesday, March 14, 2006

 

The Difficulty of Knowing

There is an old adage: Ignorance is Bliss. In the case of liberal eugenics, human genome research and ethics, some people might think this as they read on. As we come closer to discovering what makes us physically human, we come closer to becoming god-like. In the name of progress we fly higher and seek control. Apollo had a son called Phaethon, who was human. Phaethon nagged at Apollo to let him borrow the sun chariot and fly across the sky. Finally Apollo agreed. Phaethon proudly drove the sun chariot up into the sky, but then he lost control of the horses. The sun chariot dived towards the earth, burning everything. Finally Jupiter had to stop him with a thunder bolt.

In the name of progress, human genetics, biotechnology and the economic engine that will profit dearly from it all, this movement will go on. To what end is yet to be determined. In the meantime, let’s keep talking about what this all means as my son hugs me from behind with his cherub smile this morning.

I’ve been pondering my first pregnancy with Adam. The expectation of him. Needless to say, after thirty-six years of waiting, I was ecstatic. I was in Barcelona when I found out, unknowing of the apparent irony of Gaudi’s warped buildings, Dali’s surrealism – beauty born from "juxtaposing unrelated systems and altered established visual order."

When I came home to Canada was when my apparent joy was met with foreboding – my first ultrasound and nuchal screen and then shuffled in to a genetic counselor’s office to talk about the 1 in 244 chance of giving birth to a child with some kind of genetic defect. I think they told me what kinds of defects, but the discrepancy between them obviously meant nothing to me because I can't remember. That was a like throwing a bucket of water on my flame. Not having children before, I had no idea I would be subjugated to a tiny office with a stranger giving me statistical factoids – whose supposed disengagement angered me. In fact, I remember feeling pressed, asking questions of what it all meant…I just remember that severe countenance giving me probabilities devoid of empathy.

I called my obstetrician and asked him what it all meant. Did he or did he not feel that from my test results I was going to give birth to a defective child? He tried to root himself in statistics, reserving himself to the facts instead of any judgment. I searched for a tone of voice that might allude to an opinion. I found myself in an unexpected ethical debate with myself – strewn into a situation of making prenatal decisions about my child that I was wholly unprepared for, and in fact, given a choice that I never asked to have.

I felt jilted out of my joy. The news of risk not sobering, just agitating. It was overwhelming information. I did not know what to do with it. If I wasn’t so excited with having my first child, would I have listened to that counselor and aborted? I did not have the amniocentesis. Sheer excitement and determination was the force behind the birth of Adam.

Doctors, geneticists and genetic counselors are trying to remain in the neutral ethics zone. Remembering the false neutrality of that counselor, how I was shuffled into a genetics counseling office without given the choice, the warning of what that was going to be all about, I consider that the scales are tipped against this whole movement towards the rights of the disabled, and for that matter, the fetus. It is said that The Human Genome Project will identify over 100,000 genes and diseases without cures over the next ten years. I think it is obvious to state that ethically, we are not ready for this. What do we do with all that information, all that choice? There is difficulty in knowing.

I take these thoughts to daily life with friends. I know a dermatologist, working with people's desire to transcend time, people's vanity. I remember once how she considered to pin back her son’s ears for fear that he might be ridiculed in school. Of course, readers who know me will understand how absurd I feel this procedure is in the context of human difference. Let him have his ears, I say! Let him exult in his uniqueness! Yet, I know she is trying to protect him, as all parents are inclined to do. What cost is her seemingly innocent motive to “protect” her son, to the rest of us who fight furtive discrimination every day? Discrimination is so deeply rooted within us, perhaps within human nature itself, that we must tear down concrete walls with bare hands.

There are many people who put their children on Ritalin because kids simply cannot not perform in school or complete their homework. The Ritalin “is amazing,” they all say. “Joe’s [made-up name] teachers have said he is doing so well.” The teachers are satisfied that little Joe doesn’t act out in class anymore, now uniform and compliant, I suspect. "Joe" can now focus on what he has to do, I'm not saying that in itself is a bad thing. Parents are often left with no other recourse. What I am saying is that it's a shame that the "system" won't accept him for who he is. A friend asked me once “what if there was a pill Adam could take…” Ah, that thought was for a moment, tempting. I could escape all my worries if Adam’s autism could be cured by a little pill, right? This is an excellent question. What if? Would I stop this rampage about discrimination and eugenics if Adam were, all of a sudden, normal? After all, what would I have left to fight for?

Little pills, escape from any kind of struggle or pain, is all too tempting, I might speculate, for all of us. What kind of absurd world might we have if we were all operating on even-keels, on pills? (I always tend to use Ritalin as an important part of this debate). I think of a Stepford Wives world here. Within the “normal,” rigid classroom, a child who acts, or thinks, outside of the box is rejected. I must admit that to undertake the alternative, to stand up against the school system is a difficult and time-consuming undertaking. My friends do not willingly choose the path of such resistance, nor are they in a position where they need to. They are extremely intelligent and hopefully will recongize the importance of this posited argument.

I have a big reason to be concerned. My father was a victim of the Lebensborn movement in Germany, and if not specifically bred for Nazi parents, he was stolen from a Polish or Scandinavian family and put into a German one in Breslau “for his Arian features.” As a result, he had a difficult relationship with his parents and after coming to Canada in 1952, left his parents at fifteen, the pain of being any part of Nazi Eugenicism a complete repulsion to him at that young age. He tried to convert to Judaism. His daughter brought that realization full circle as he now has a Jewish grandson.

I am considering today how the Eugenics Movement has too much steam in its disguised innocuous research, and ideals that can be traced back to the universal worker of Karl Marx, who sought uniform and idealistic physical traits of workers, for the sake of the nation.

Just how much do we conduct science for the sake of mankind? Or is it the quest to be like the gods? What drives us in these quests? The greater good, or control? If we want a greater good, we always have to take the other, more unpleasant side or progress. We also have to understand that all words may sound the same, but have entirely different meanings.

I am certainly not saying that most people are evil or have evil intent by actively participating in cleaning up the human race. I am not accusing parents who give their children Ritalin or consider pinning back their ears for aesthetic reasons.I am suggesting, however, that the pressure to belong, to fit in this "normal box" is immense. I am also suggesting that wrapping up language and intention in palatable words, ones that seem to be harmless, or disguised for the greater good of humanity, may in fact be just the opposite. Hitler’s propaganda promised a better Germany – more jobs, economic stability. You can wrap up intention in all kinds or good words, but it doesn’t mean the same thing.

In looking deeper into my social responsibilities, in putting some intention and action behind my beliefs, I have to reconsider the rights of animals, the rights of minorities, the poor. I can’t sit back and scratch myself debating this intellectually as I sit comfortably in my chair. I am considering how I can best participate. I am incorporating a Canadian organization which will deal with acceptance. Yet, I consider that as the years progress, this will evolve into an organization to undertake political action. It is unknown territory for me (any words of advice are welcome at this stage). Let me begin with incorporating and organizing the exhibitions and lectures this fall. (help me with the name please – I like Action for Autism and Project Ability – both out of the UK). I’m not exactly sure where I’m headed. There is difficulty and responsibility in knowing.

20 Comments:

Blogger Jannalou said...

I'll be a part of the organization - as long as cross-provincial membership isn't a problem...! ;)

I talk about meds and what I think of them a lot. I do think they have their place, but they should be used for the right reasons. Controlling behaviour is not one of them. I take meds for my ADHD so that I am able to focus at work, so that I am able to be on time for things, and so that I am able to have lower levels of anxiety when crises happen. I take them so that I can learn how to manage my life and, maybe, someday, be able to go without them. But I have a late start on the meds & learning game, so I may never get off the meds. And that's okay.

I look at it like this for children, as well. If I had a child who was diagnosed with ADHD, I would certainly work with the doctors to find the medication that would help him most. But then I would work with my child to help him learn the skills that the meds cannot give him: self-awareness; awareness of time; task completion; assertiveness; tidiness. And more that I can't think of right now, things like social skills and hygiene and money management. Those things that I have struggled with all my life and am only now, finally, learning to manage (somewhat) properly.

I love the way my brain works. I love the richness of thought, the fullness and creativity of the ideas that my brain can generate in a day. But I appreciate the slowing that the meds give to these thought processes. It can be overwhelming to have so many thoughts falling past and to be unable to catch even one because they are moving so incredibly quickly. The meds don't diminish the ideas, they just slow them down so I can catch the ones that might have some real substance and, hopefully, develop them.

11:21 AM  
Blogger Estee Klar-Wolfond said...

Thanks, Jannalou!! I appreciate your insider perspective of Ritalin/meds to round out this view.

No provincial boundaries in the org I am incorporating, so in fact, your help and participation from the west would be fantastic!

What do you think about its name?

11:25 AM  
Anonymous Anonymous said...

How Autism Parents Community Canada? APCC
This will also have the added benefit of helping the autism/autistic community with the reclaiming of the phrase 'autism community' which is used by parents and causes confusion.
Good luck with your group.

Amy Nelson of http://www.aspiesforfreedom.com

12:46 PM  
Blogger Estee Klar-Wolfond said...

Yes, that's good. I want the name to capture the essence and growing prospects of the group. Project Ability or names with acceptance, respect, diversity in them, might encapsulate more. Action for Autism is really good -- it can encompass the artistic events I have to support the intent while leaving room to help schools with supports and transitions, as well as advocacy.

Keep them coming! (please)

1:19 PM  
Blogger Estee Klar-Wolfond said...

I just came across Mothervox's post "Risk Management" where she talks about Ritalin and meds. I think it's a great post that tempers my argument and everyone should read it. She states:

"While I might long for a world where my daughter could thrive without either of the medications she takes, we certainly do not inhabit such a world now, nor can I expect that we will we anytime soon. My own tendency to want to resist or refute the medical protocols of our day are mitigated by my parental desire to create the best possible life for my child in a world where the odds are already stacked against her.

And so while it's a bit odd to think of parenting as a risk assessment exercise, I'm afraid that the Becks, Miller, and Leger are probably correct: we're constantly calculating the odds and aiming for the best outcomes.
for ADHD."

I can attest that the choice for my girlfriend to put her son on Ritalin was backed up by research and questions. She hesitated, most certainly. She didn't want to harm her son in any way, and if he could have performed without it, she would not have put him on it.

Risk management is an excellent way to view parenting in the world we live in today.

1:39 PM  
Blogger abfh said...

Bravo!!!

I think you should use "neurodiversity" or "acceptance" somewhere in the group's name, so as to distinguish it very clearly from the pro-cure groups.

"Action for Autism" is a good name for a blog, but a group with that name could easily be confused with pro-cure groups such as Action against Autism, etc. And you wouldn't want people to make the mistake of donating to them instead of you!

2:38 PM  
Blogger Jannalou said...

I don't know about having parents in the group name - we want autistic people to be members, do we not? "Just another parents group" is not necessarily useful. And I'm not a parent, either!

You could use the name I've been using for my autism web site: Awareness, Support, Development. It's a play on ASD, of course. ;) But if we're going to be inclusive, probably having Neurodiversity in the name is a better choice.

What about AND - Accepting NeuroDiversity

The logo could be a variation on an ampersand (&) - thus totalling that silly puzzle ribbon and the silly puzzle pieces!

3:06 PM  
Blogger Estee Klar-Wolfond said...

Jannalou,

Yes, that's the name I was thinking of as well. Neurodiversity pretty much distinguishes what we're talking about here. I love the A.N.D. as well.

I'm considering all suggestions that are offered.

4:19 PM  
Anonymous Bonnie Ventura said...

Two thumbs up for Accepting NeuroDiversity! I like the idea of the ampersand as a logo, too. Maybe with rainbow colors?

On medication and risk management: I know there are many people who feel that Ritalin and other meds have helped them fit into a difficult social environment, and although changing the environment rather than the person would be ideal, that may not be possible sometimes.

I personally wouldn't want to risk long-term use of such medications, though, because most of them haven't had any long-term safety studies. Some haven't been tested at all in children. It's hard to make judgments about risk when you just don't have enough information.

The stigma of being medicated for "deficits" and "disorders" also concerns me. An adult may choose to drink coffee every morning to focus better in the workplace, and there's no stigma attached to that, but how does it affect a child's self-image to be told that he or she must take medication every day for a mental disorder?

5:18 PM  
Blogger Jannalou said...

...how does it affect a child's self-image to be told that he or she must take medication every day for a mental disorder?

Good question - one I can't answer.

But I can tell you that I'd rather have been on meds as a child. Having to take a pill or two every morning and noon would have been preferable to the ostracism I endured. Never out-and-out bullying (that I can recall), to be sure - I was quiet enough that I didn't attract too much adverse attention - but some name-calling, and poking fun, and teasing. And refusal to stop such things when I complained, from both the adults in my life and the children picking on me.

As I said, I would use meds with my own ADHD child (assuming here that I even ever have children). We would talk things over, and I would make sure that he understood that having a label that includes the word "disorder" in no way means that he is defective. I would explain that the world just isn't ready for those of us who think so differently and randomly as we do, and that the medication won't change how we think, but it will make it so that other people have an easier time understanding us. I would explain that sometimes we really do have to just do things and get them done, and that it's really hard to follow through on those kinds of things when your brain is running 1,000 miles a minute, so the medication helps our brains slow down so we can get things done and learn what we need to do in different situations, so that maybe someday we won't need medicine to help us like this.

And no, I don't expect that my child would understand all of that right away. But it doesn't make it any less true, and he would always know that he is just right the way he is, because God made him that way. And he would always know that different doesn't equal defective.

(I also always look up medication on drugs.com when I'm given a new prescription, and I would never allow any of my children to be put on medication that has not been tested for use in children.)

9:40 PM  
Anonymous Anonymous said...

I was on meds as a child (and I'm fairly certain I am older than most of you) and I probably wouldn't have survived without them. Further, I am from the era/US socio-economic group when nearly everyone had a psychiatrist. From where I sit, I have seen children medicated for one thing or another for nearly fifty years. It's not a new phenomenon. I think it's being discussed more because of a combo of the internet and the de-stigmatization. Also, the meds from way back were much, much stronger. Some of them were better, imo, but they're either off the market or not Rx'd any longer. Again, it did not make me feel different or compromise my self-esteem to be on meds. The hardest part of my youth were the schools I attended, all top-notch, but so sociopathic.

11:19 PM  
Anonymous Lisa said...

On one hand, I absolutely believe that schools in general have a hard time accepting kids "as they are". On the other, I also absolutely believe that children take stimulant or other medications because the adults in their lives believe it will help them. My experience has not been that medicating children is born out of a desire to control or manipulate their personalities. And my experience with children on and off medications does not at all suggest that, in fact, the medicine is even capable of doing that.

I've worked with many children who were diagnosed with some sort of attention impairment. These were children who would accidentally hurt their friends' feelings, provoke adults with impulsive comments (and then be mad at themselves for doing it), lose treasured belongings, get yelled at by coaches because they couldn't follow the flow of a game, do their homework but forget to hand it in, take huge risks such as crossing a street without remembering to look or jumping from the top of a playground without thinking, and get 7/8 through a project and then get so distracted that they never finished. Many of them had difficulty with language processing and learning academic skills because they couldn't focus reliably, even with 1:1 attention from teachers and tutoring and small class size and speech and OT and all the other modifications that should be tried.

It wasn't a matter of not enjoying their personalities or wanting to change who they were - though to be honest, many people do find it challenging to maintain an emotional connection with someone who walks away in the middle of a conversation, who doesn't listen or remember what they were talking about, or blurts out insulting comments (even unintentionally). A child could appear rude, confrontational, or uninterested in others, simply because of behavior generated by attentional difficulties. In my experience, this sort of difficulty is much harder to perceive and explain to peers and other adults than more obvious behaviors such as hand flapping or tics, which most people understand either can't be helped or serves a specific function. But most people really find it hard to believe that someone really "can't help" rude or disruptive behavior. They blame the child for being a jerk, the parents for not teaching manners, the teacher for not having a good enough classroom management system, and so on. The worst is that, in my experience, a child can begin to believe that he IS rude, lazy, unmotivated, or too stupid to learn.

All medication does, when it is working properly, is make the child available to learn and the behavior available to change. That's it. Instead of "ready, fire, aim" the child can actually have the opportunity to think about something before doing or saying it. They can focus on a teacher's voice instead of the fact that their neighbor's copy of the book has darker print than their copy. Sometimes they jump several grade levels in school subjects because they can actually demonstrate what they've learned, or listen to an explanation and THEN try the experiment out. Sometimes other learning issues become clear as the fog of behavior recedes and the child's work becomes more consistent.

Attention is like a telescope/microscope in one. Sometimes you have to pull back and see the broad picture - sometimes you have to focus in on a little detail. Children with true attention impairment can't reliably focus or shift their attention, which means they use only a microscope-sized lens and miss the big picture, or use only a telescope-sized lens and miss important details. Sometimes the lens is blurry - sometimes it's focused on the floor when the action is happening at the lab table. Sometimes the action moves, but the lens stays put for too long, causing the viewer to miss a chunk of what's going on. It's different for every child, of course. And meds or not, everyone has their own unique set of lenses through which they view the world.

6:02 AM  
Blogger Estee Klar-Wolfond said...

Really good arguments here.

Then there is some consensus here that if a pill were available for autism, you would give it because it would help the child function in an unaccepting world, enabling them to focus, demonstrate their capabilities and control their behaviour.

Meds are given (on the meds issue I am NO expert, but if people can make me more aware of WHAT KIND OF MEDS their kids with autism and ADHD are on -- Paxil, Ritalin, etc... that would be of interest to me), for anxiety issues, sleep disorders and attentional issues. Did I miss anything?

Yet, attention in autism is a hefty issue -- processing issues being one of the top issues I hear for people with it.

I am all for supports. I perhaps, am an Idealist thinking that the use of medication deals with half the issue -- that the onus is on those with the disability or the disorder to fit in. What about the external world accepting these different states of being? Different behaviours? We really are afraid of them, aren't we?

If my argument talks about acceptance, then what are we really talking about when we say that? Or do you feel that the medication issue is secondary?

Personally, I grew up in an environment that was so anti-med, that I may have unrealistic bias. If Adam was hurting himself, or if he had huge anxiety issues, I can't say if I would choose to stay away from medication. I haven't crossed that bridge in all fairness.

An argument may not reflect the current reality, but your answers still beg the question.

8:16 AM  
Blogger Estee Klar-Wolfond said...

Oh one more thing in support of your arguments. Jonathan Lerman says he "wants help" concerning his seizures. He is able to ask for it, and he is in control of it to a certain degree.

8:19 AM  
Anonymous Anonymous said...

I take my meds ,not to satisfy society or to "fit in" but to enable me to sit more comfortably within my own skin. For me and nobody else. To enable me to function in the way I want to function not the way someone else believes I should be functioning.To an extent the aversion to medicating has to do with "acceptance" of a label and as was noted before one need not accept a label to benefit from medication.As for safety, there was a time when apple juice was thought not to be safe (alar).And there is question as to whether Cheerios are safe. Really.Other wheat products baked at high temps apparently.You wrote about time and how it slips by so quickly and making the most of it.Meds help me make the most of my time on this earth.It is possible to eliminate or reduce obstacles that block the path. This does not mean a cure. This does not make me a different person but it brings out the best in me.We have no problem medicating for things that bring pain such as ear infections or such like. Nobody wants to be numbed out by meds but the newer meds are much better than what was available years ago.

10:53 AM  
Blogger Lisa/Jedi said...

My son, B, is on seroquel & zoloft, not for his AS, but for Obsessive-Compulsive Disorder, which he developed 2 years ago at the age of 8. Until the OCD arrived, we did not consider any of B's spectrum behaviours to require medication & were able to help him cope with life by having regular visits to his psychologist (dealing with his "symptoms" with behavioural help), finding a school that values neurodiverse kids, & making sure that he got the additional help with fine-motor skills & pragmatic speech that he needed. The OCD changed everything, because he was clearly so ridden with anxiety he could not function, with the anxiety occasionally escalating up to cause him to have psychotic episodes. Neither the zoloft nor the seroquel alone work for him, so we use the combination & it generally allows him to enjoy his life a great deal- the exceptions being when he has had a growth spurt & "runs out" of his current dosage. I do not see these meds as being permanent, but as bridging the developmental gap between his present developmental stage & being able to fully benefit from cognitive/behavioural therapy for the OCD as he gets older. We already use many behavioural methods with him, helping him to find "tools" such as calming techniques, diversions, finding ways of thinking & talking about the invasive OCD thoughts, so he is well on his way, but still has a long way to go.

Because I appreciate B for his neurological differentness, I would not be one to agree to give my kid a pill that would change this aspect of him... however, he, his dad, & I are all in agreement that the OCD could go away tomorrow & no-one would miss it, since that's what really makes his life difficult. This discussion reminds me a lot of Elizabeth Moon's The Speed of Dark, which considers this very question of whether AS-type conditions should be "cured". It's an amazing book...

7:29 PM  
Blogger Estee Klar-Wolfond said...

Lisa/Jedi,

Thanks for the book recommendation. I read just about everything commenters recommend!

11:18 AM  
Anonymous Anonymous said...

hard to believe you have not read that one yet.

1:27 PM  
Blogger Estee Klar-Wolfond said...

Thanks "Anonymous."

11:06 PM  
Blogger Ettina said...

"I am suggesting, however, that the pressure to belong, to fit in this "normal box" is immense."

Our society has a fear of the "other" that goes way back. I am trying to change it, but it sure won't be easy, since it's so ingrained.

"I am also suggesting that wrapping up language and intention in palatable words, ones that seem to be harmless, or disguised for the greater good of humanity, may in fact be just the opposite. Hitler’s propaganda promised a better Germany – more jobs, economic stability. You can wrap up intention in all kinds or good words, but it doesn’t mean the same thing."

To quote the Beatles Revolution:
"You say you got a real solution, well, we'd all love to hear the plan
You ask us for a contribution,
well, we're all doing what we can.
But if you want money for people with minds that hate,
all I can tell you is brother you have to wait."

"Personally, I grew up in an environment that was so anti-med, that I may have unrealistic bias. If Adam was hurting himself, or if he had huge anxiety issues, I can't say if I would choose to stay away from medication. I haven't crossed that bridge in all fairness."

I have both. In my case, I took meds for the anxiety (prior to starting to hurt myself) but in combination with removing the cause of the anxiety (by starting to homeschool me, as school was causing my anxiety, both due to the teachers and my classmates). I was on the meds temporarily, until I felt safer again. I still have anxiety problems, which flared up again along with the self-injury when I attended school again last year. I am currently working on curing both by healing from the psychological wounds that caused them - sexual abuse as well as bad school experiences.

4:22 PM  

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