Saturday, February 25, 2006


On the heels of my thinking about "oughtism," I'm drawn to thinking about its inverse: repressive tolerance.

The idea of repressive tolerance, developed by twentieth century political philosopher Herbert Marcuse, is that sometimes actions that appear to be about freedom and human liberty are actually repressive. Some behaviors that we tolerate in ourselves, and in others, in the name of freedom, may actually be detrimental to us individually and collectively. Or, put differently, what looks like freedom may be a pleasant, pleasurable prison.

Marcuse's examples, from 1965, included allowing advertising and publicity to dumb-down our thinking, or allowing automobiles to transform the landscape of our cities, making pedestrians an endangered species. In the name of freedom, and especially in the name of free markets, we've come to allow all kinds of ills, from environmental havoc to electoral travesties. In the name of sexual freedom we have, perhaps, created vacuous forms of sexual expression that lack any sense of human connection. For Marcuse, while these "freedoms" look like some sort of liberation, they're actually repressive in that they limit the sort of genuine human flourishing that he envisioned.

Consumer culture is particularly prone to encouraging repressive tolerance. For example, that "one more donut" might feel like it was your choice, but it might also have just been because a marketing genius at Dunkin' Donuts figured out that they should pipe the smell of donuts out of their shops to snag us all by the primal sense of smell.

So what does this have to do with oughtism, autism, and raising Sweet M?

While I hope for liberation from oughtism, I sometimes wonder if my willingness to go with the flow with Sweet M constitutes a kind of repressive tolerance born of parenting fatigue. It's often so hard to know when to push and when to back off.

Even for parents of typically developing children there are questions of when to discipline and when to leave well enough alone, but for autism and ADHD parents, the stakes are arguably higher, and the possibilities for parental fatigue that much greater. After one gets done slaying the dragons around the IEP conference, or the Board of Education's bus schedules, or the school placement — not to mention earning a living adequate enough to support the services our kids need — how much energy remains for reigning in our kids?

While there are many non-negotiables in Sweet M's world: no hitting, no screaming, must do homework, and so on, she also has a huge amount of freedom in, for example what she eats. She really doesn't like much of anything that isn't pasta, sweets, or milk products. She may very well have a gluten-casein sensitivity, but I haven't had the heart to go through a rotation diet with her. Controlling her food reminded me much too much of battles over food, eating, and body image with my own mother. So she eats pretty much what she wants — a hi-carb, hi-sugar diet very similar to that of high-functioning autistic genius Andy Warhol — and she takes a megavitamin (non-negotiable).

We have allowed many of our parenting decisions to be governed by her preferences, and I sometimes wonder how wise that is. What are real preferences — that ought to be honored — and what are the passing whims of an eight year old?

I think about one of the hot-button issues among autism parents and autism activists—how to handle our kids' stims. If we believe what autistic authors such as Donna Williams and Temple Grandin say about stimming, then letting our kids remain transfixed by rituals or other stereotypies, would be repressive, in that it would not be allowing them access to their human freedom. But, on the other hand, having some sort of self-soothing behavior, which they also describe stimming as being, can aid in regulating internal states.

How do we balance between oughtism — shoehorning them into shapes that are too far from their natural inclinations — and letting them run too wild, too far a field, too uncultivated?

I wish I knew.



kristina said...

This is such a tough issue that I wake up to everyday. To be very honest, my friend, the "rigidness" of behavioral science--the comparisons of it to dog training--made it seem like the least likely course my humanities-centric husband and I thought we would pursue for Charlie. But things became clear early on that we must try it and what a surprise: The most structured and deeply behavioral course of action has been, for Charlie, the one thing that has the most potential to give him freedom or (as I like to say) the good life.

The contradictions of Autismland!

Charlie has a lot of OCD in him and foods are at the top of his list. He just can't stop when he gets started----as for issues of mothering, body image, and cultural norms of beauty and weight, I will not get started.

What is cult---what (autism) culture---when do we start to cultivate, and ought we to employ natural or human-made fertilizer?

Jannalou said...

My parents didn't know they were raising a child who had ADHD, but I grew up to be a woman who is confident, independent, and able to regulate her interests (to an extent).

Yes, I participated in a self-esteem group last year, and I have been in counseling more than once. But it only stands to reason that I would need such things when I wasn't diagnosed until adulthood. Regardless of how great my parents were (and they did make some mistakes), the rest of the world expected me to be something I will never be, and I had to learn that I didn't have to conform to what society wanted of me in order to be a valuable human being.

I still have some trouble with that, but nowhere near as much.

Your final question: How do we balance between oughtism — shoehorning them into shapes that are too far from their natural inclinations — and letting them run too wild, too far a field, too uncultivated?

My parents found a good balance, I think. Their mistakes were more about Dad's explosive temper and his working too much, and about Mom's making me a friend when I was still a child.

They encouraged our interests: I loved to read, so I was given every opportunity (and taught when I was 3); when I was interested in ballet, I got to take lessons, and that interest did expand to jazz, gymnastics, and baton twirling (not all at once) for a few years; and when I became interested in autism, I was encouraged to do research - and my first position in the field was found via an ad my mom found in her city paper.

We learned to cook when we reached adolescence, and then we were all expected to cook one dinner a week. We started doing dishes before that, and we started doing our own laundry when we were about fifteen.
We all took private music lessons of some kind, except for one of my brothers, whose interests have always been far elsewhere. We chose the instruments, and Mom & Dad paid for us to have private lessons with the best they could find for us. That basically meant driving two hours each week (an hour each way) to get to the nearest large centre so we could have lessons with a teacher at the college there (in the case of myself and my fellow clarinetist brother) or at a private studio (in the case of my pianist brother).

It is possible to encourage individuality without overdoing things. We had definite rules, and we knew what the boundaries were. We ate our meals together as often as possible, and we spent time together as a family on a fairly regular basis. As a result, when we are all together (which happens very rarely now that we are all adults), we are as likely to sit in the living room chatting or playing a board game together as we are to be out with friends, singing around the piano, or watching a movie. Because our individual interests were encouraged, we have some overlap but are definitely very different from one another.

If I were to take all four of us and list us by major interest, I would do the following:

JL: autism
MS: comic books
JD: Christianity
MJ: history

But we are all interested in Christianity (we are all Christians, and we all are active members of our home parishes), we all have some sort of comic book collection, and we all have some interest in history. I have less interest in history than the others, but I balance that with my obsession with autism and guinea pigs... both of which are decidedly unique interests in my family.

But that's the thing - it's okay, in my family, for me to not like history at all. And it's okay for me to be obsessed with autism (and the boys all know something about it, if only because they've had to listen to me blather on and on and on...), and it's okay for me to be obsessed with guinea pigs. The latter obsession makes everyone smile in that tolerant manner that says to all in the room, "humour her, she's talking about the animals again"... but it's not something I have ever been ridiculed for.

Zilari said...

There really are no easy answers, but there are certainly a lot of strong feelings on this issue. I definitely believe that some things are non-negotiable: safety must be observed, and certainly "no hitting" and "no screaming" and "must do homework" are very reasonable goals. From my perspective as a young grownup on the spectrum (I'm 27 but feel about 12 most days), I'd say you are doing an excellent job of picking your battles with your daughter -- who, by the way, sounds like a very bright and insightful kid. At least you are aware that she HAS sensory issues...this is one thing I would love to go back in time and explain to my family, who were probably very confused as to why I was so adamantly opposed to wearing dresses, why finding a stem(!) in my strawberry pancakes prompted an hours-long screaming fit, and why an 11-year-old wanted to leave a Fun amusement park and go hide in the hotel.

When it comes to the stimming debate, I don't see any reason why harmless, non-injurious, non-poop-related stims should be stopped. It is important to remember that periodic stimming is a default for people on the spectrum. NOT doing it requires tremendous concentration and energy expenditure. If a child is doing nothing BUT stimming, that is one thing (and probably indicates some sort of very severe sensory issues which might want to be looked into). Just as a parent should not let their "typical" child do nothing but watch TV all day, I don't think that just letting a child sit in a corner all day staring at a piece of string is very healthy either. It's not the what of the activity, but the when and the why.

I suppose another important thing to remember is that for "typical" or NT or whatever-you-want-to-call-them individuals, there is no expectation that they constantly go around in a state of rigorous self-monitoring. Hence, it can be difficult to appreciate what autistic people go through in the attempt to please those around them and avoid being bothered for being who they are. If a nonautistic person was suddenly told one day that they had to start adhering to certain routines, that they had to watch the same movie every night for a month, that they had to remember to flap their hands every so often...they might understandably protest this, and if they tried it, they'd probably find it exhausting. I have read the writings of many adult autistics online, and not one of them claims they never stim...most of them say that they've simply found subtler stims and are more selective about when and where they engage in them (while others actually stim more since they've discovered that repressing these natural behaviors is detrimental to their everyday functioning ability).

I don't think that (as you described in your previous entry) that letting a child whose physiology hasn't quite caught up with nighttime bladder control wear pull-ups to bed is putting her in a "prison". Eventually there is likely to come a time when the pull-ups are dry every morning. This is practical, not even in the sense of being an "accomodation" -- people can't very well be expected to exert some form of "willpower" when they are unconscious in deepest sleep, so not wearing the pullups is not in any way, shape, or form going to teach anything.

I don't think anyone anywhere is saying that "acceptance" means "ultimate permissiveness" or that constant self-indulgent hedonism is the most preferable way to live. Learning to forego and delay gratification is a very important skill, and one that has allowed civilisation as we know it to develop. Cases need to be considered on an individual basis. My autistic brain prefers specifics to generalities: I know that sometimes it might be okay to eat the donut (if I've already had a nutritious meal) but that other times (on an empty stomach) it isn't. I don't have a general "donut policy" -- every donut is considered in its own unique paradigm, in both time and space. I think sometimes people are looking for an approach to take in parenting their autistic child, but the reality is that every episode, every day, every child, every choice needs to be considered as individually as possible without thinking in terms of some over-arching policy. This can be tiring (I know you mentioned fatigue) and sometimes any parent can move into the realm of "too strict" or "too permissive". This probably happens in most people's childhoods. The key is just staying away from the "neglect" end of permissiveness and the "abuse" end of strict.

MothersVox said...

Jannalou and Zilari, Thanks for your thoughts from the spectrum perspective -- that's very helpful. I guess I agree that navigating between the neglect side of permissive and the abuse side of strict is the course one tries to steer in parenting any child. With ASD kids it feels (though it may not actually *be*) that the stakes are higher.

Kristina, my friend, complicating the question of culture is, of course, my most central concern, in parenting and in my other pursuits.

When I think about you, and Jim, and Charlie, the thing that comes to mind is Foucault's construction of discipline as constructive . . . as a paradoxical source of freedom.

While I'm no big Foucault fan, it is not difficult to see that particular constraints or disciplines allow for particular sorts of freedom . . . the Olympic figure skaters, now done with their competitions for the moment, are a fine example because the grueling rigor of training allows for the seeming effortfulness of the best performances.

Your family's adherence to a behavioral and dietary regimen -- and your work to find him an appropriate educational placement -- allows for Charlie's extraordinary successes.

Estee Klar-Wolfond said...

Thanks for brining the argument to the fore. I really agree with Zilari and try to let Adam be at times. There are other times we play together, there are times at night when he might want to watch his fingers. It's not harming anyone, not me, not him.

I find that this sort of "middle of the road" approach and accepting this has actually DECREASED the stims. It's not that I want that, I have learned not to really care about them in the sense that it makes him happy and it seems to be his way of grounding himself.

However, I think through acceptance he has also relaxed. We spend a lot of time engaged -- playing and learning and just rolling around together. It is amazing to watch how happiness and being relaxed takes away (for Adam) the need to "stim."

Again my words may be eluding to the fact that I don't want stims, or that they are bad. If they are not harming him, or anyone else, I really don't think they are bad at all.


Pem said...

My son is 15 and now at a boarding school which has good support for but doesn't specialize in kids with learning differences (Christ School in Arden NC). We have definitely leaned towards the tolerant side. Let me give you two examples.

I let both my ADD kids read books in church and not follow the service. I figure that for someone with ADD sitting in church is much more difficult than it would have been at that age for me. I felt a little awkward about it when a new minister arrived, as at 12 and 15 it seems less acceptable than it did when they were little. But then I reflected that I had heard that the new minister's 12 year old daughter refuses to go to church.

My son's relaxation activity is hanging out in Pokemon groups on the internet. I had mixed feelings about that, but decided he should be able to do what he wants in his down time. Interestingly, one thing he has gotten into is writing fan fiction. And he has gone from having terrible trouble with writing to being the best writer in his 9th grade social studies course.

I try to pick my battles wisely. And what I am maybe half-unconsciously doing is picking no more battles with my son than I do with my daughter (who is ADD but without the autistic spectrum characteristics). For a kid who is so different, picking the same number of battles as you would with a kid that fits in easily means letting a lot more pass. But if I picked more battles I would feel I was giving negative feedback all the time, and that that would be harmful.

Anonymous said...

Sorry, this got stuck in the inbox pilefor a while.

Liz here from I Speak of Dreams

parmesan cheese smelled like barf and was inedible until I went to Italy in my late 20s...Miss M is absolutely correct. It was gag-inducing, and I'm neurotypical and pretty tolerant of most stimuli.

I was an intermittent bed-wetter into, oh, 3rd grade...and when I had mono my freshman year in college, straight back into bedwetting. Dang it was embarassing and annoying--I had to the laundry myself. Wish they'd had Depends then.

Coming back in the plane my ears were stopped up--the pain was intense. I would have been screaming if I were not a mature sophisticated adult. Then as I blew my nose and yawned and waggled my jaw, the sensations and sounds in my head as the pressure equalized were just horrendous. I would have pitched an insane fit if I were not so sophisticated about what happens as air pressure equalizes in the sinus cavities.

I just finished reading Green's The Explosive Child. I wish it had a different title because it has turned off a couple of parents --why should I read that?? My child isn't explosive--but it has a really great model of parent/child communication and problem-solving. ANY parent could use the model to good effect, but it might be particularly useful for parents of ASD kids. There's a website too.

I also read Tamar Chansky's Freeing your Child from Anxiety--more good models on how to break down big issues into small ones, and celebrate small steps toward master.

I also like (and facilitate classes) in the Love and Logic model. (Here's an introduction; this is Choices .

L&L, like Green's model, starts with empathy for the child.

MothersVox said...

Liz, Thanks for sharing those website and other titles. At this point the only models that I'm going to explore are ones that start with empathy for the child . . . The ones that are about compliance are just annoying to me. I'll check out the site for the program you teach!