(no subject)

[naomikritzer]

lilisonna noted that she was unfamiliar with the Bettelheim/Refrigerator Mother thing. An FYI before I talk about it: I am not an expert on Bruno Bettelheim, autism and its causes, or anything else I'm about to blather about, so if anyone chimes in with corrections, they probably know more about what they're talking about than I do. But, here goes.

Bettelheim (the author of The Uses of Enchantment) believed that autism was caused by maternal rejection. The "refrigerator mother" didn't love her children (at least, she didn't love the autistic child -- at least, not the right way) and so the child responded by withdrawing.

This theory was emphatically, horrifyingly, wrong. Bettelheim reached this conclusion in part because he saw mothers of autistic children not touching them a lot, not making eye contact, etc. -- in fact, autistic children often instinctively shy away from physical contact (theyr'e "uncuddly" babies) and are calmer and happier if you avoid eye contact, so the mothers were in fact responding lovingly to do the best they could for their children.

The effect of this theory on the mothers of autistic children is easy to imagine. You are a Bad Mother. You are such a bad mother that you have irreversibly damaged your child. Under optimal conditions, most mothers feel guilt for being imperfect. So imagine that you've been doing your damnedest for difficult child under trying circumstances and now a doctor comes along and says your child is disabled because you didn't love him enough.

The effect on the autistic children was probably nearly as bad. I think treatment often involved separating these kids from their BAD, NEGLECTFUL, EMOTIONALLY DISTANT mothers -- in other words, from their one source of love and stability. (Some of these kids no doubt really were neglected and abused, just like some of any group of kids were neglected and abused. But most came from normal homes and had loving parents who desperately wanted to do well by them.)

There are all sorts of treatments available for autism now, which (as I understand it) are premised more or less on the idea that autism is the result of some sort of organic brain problem -- there are neurological pathways that are not working, and kids are not getting "good, do that again" feedback from their brains when they engage socially with people around them. Brains are malleable, however, especially in the young, so you can work with a young autistic child to reinforce the pathways you want (by rewarding social behavior). (I am TOTALLY NOT AN EXPERT on this, just to be clear -- this is my understanding of how it works.)

I have an online friend whose son was diagnosed with profound autism at an early age, when he didn't learn to talk. My friend's family relocated to California precisely because there would be excellent resources for therapy. She researched therapies, therapists, the laws of her state regarding Early Intervention, etc., etc., etc., etc., and got him into the most promising, intensive early therapies she could find. He has responded really well and from what I have heard, people who meet him now do not realize that he is autistic. He smiles, talks, rough-houses with his brother, etc.

But note, please, the effort engaged in by his mother. His father is involved and loving, but it was his mother who devoted her energy and passion and commitment to finding out where they needed to live, what kind of therapy he needed to get, etc. She was terrified when she found out he was autistic; it was the diagnosis she had most feared when he didn't start to talk. When a child is born with a disability -- whatever it is -- that child's parents are going to be their best advocates, 99% of the time. If you start off by saying, "Okay, the problem here is the parents..." and it's not you've just seriously damaged whatever options that child had for overcoming their disability.

As a side note, the autism rate has gone way up over the last few years, and no one really knows why. It may be an increase in diagnosis -- there are kids now who are diagnosed as having an "autism-spectrum disorder" that in the 1970s would've just been considered kind of weird. (Today, a diagnosis means you can get services, so it's well worth following up, as early as possible, if your child isn't talking on schedule or whatever. Early Intervention is AMAZING.) There is a large contingent that blames vaccines -- the mercury preservative that used to be used in childhood vaccines (thimerosal) or the MMR (which didn't contain thimerosal) are the two that are named most often. There was also the geeks-marrying-geeks theory floated in Wired magazine some years back. I think there may be something to the mercury exposure theory for some kids -- or there may be some other environmental thing that's going on -- but I am really not sure.

So that's my rant about Bettelheim and Refrigerator Mothers.

Comments

[irihs.livejournal.com]

I'm pretty sure that the studies suggestion that there was a causal link between vaccinations and autism rates was found to be seriously flawed.

I used to go to a lot of talks on autism, when I was in grad school. I remember hearing that diagnoses of less severe forms of autism that wouldn't necessarily have been diagnosed a couple of decades ago accounts for the vast majority of the rise in diagnoses.

My boyfriend's niece has autism spectrum disorder. She has generally severe delays in social and cognitive development, and I'm fairly confident that the word "autism" wouldn't have factored into her diagnosis at all a generation ago. I think there has been a big change in the way certain things are framed in the psychological and psychiatric community, and it happens to be that autism is currently being used as the primary diagnosis or label, even in cases where it is clear that it is only a small part of the story.

[naomikritzer]

I remember hearing that diagnoses of less severe forms of autism that wouldn't necessarily have been diagnosed a couple of decades ago accounts for the vast majority of the rise in diagnoses.

I had wondered if that was the case.

Regarding the vaccine thing -- on one hand, I think there is a greatly overblown paranoia surrounding vaccines in the crunchier-than-thou community. (With the worst examples being people who refuse to get ANY vaccines and would not get a tetanus shot for a kid who'd just stepped on a rusty nail.) On the other hand, I've heard some really compelling anecdotal evidence from parents who saw an overnight change in their child after the MMR vaccine.

Here is my theory about mercury and the MMR. The MMR never contained mercury, but is usually given with several other shots, all of them Dose Two or Dose Three of some multi-shot series. Those shots used to contain thimerosal. Some kids are particularly sensitive to mercury, and the thimerosal in those shots was the tipping point that pushed them into toxicity. The parents blamed the MMR because that was the only new thing from that day. The follow-up studies have found no MMR link because they've carefully isolated the MMR. Maybe?

In any case, I am strongly supportive of vaccines. But I do think it was good that they took thimerosal out. To quote a doctor friend of mine from some years ago, "Yeah, it's a drop in the bucket, but we do each only get one bucket and it has to last our whole life." (For those who are reading this and wondering why the hell mercury would have been in vaccines to begin with -- thimerosal is a preservative.)

[porphyrin.livejournal.com]

I would chalk up the rise in diagnosis to two things:

1. Increased awareness on the part of physicians
2. Diagnosis of related pervasive developmental disorders being lumped in with autism diagnoses in the statistics.

Also, it's been proven, re-proven, and proven again that vaccination does not even have a statistical link to autism, with *large* (in the hundreds of thousands) population groups.

All vaccination, not just the MMR. I'd be happy to get you the references if you want them.

The problem is, autistic behaviors in children vaccinated and unvaccinated begin to really become prevalent at about 9-18 months of age. In other words, about the time that dose 2 or dose 3 of the shot series is given.

So to me, it's like saying that since Minneapolis has more Southern Baptist churches than ever before, and Minneapolis also has a higher incidence of alcoholism than ever before, Southern Baptist churches must harbor and enable autism.

I field questions from parents on this subject every week. Can you tell?

[naomikritzer]

Well, I could totally go along with a theory that Southern Baptist churches harbor and enable alcoholism. *snicker.* (My mother's side of the family is Baptist, and my Grammie's male relatives all drank themselves to death.)

And I am really not at all surprised that you get questions about this every. single. week.

The anecdotal stories, though, mostly involve kids who were making eye contact, who had a few words and good receptive language, and who abruptly retreated into autistic behavior. Is this typical for autism?

[porphyrin.livejournal.com]

Yeah, that's actually pretty typical for pervasive developmental disorder.

One of the hallmarks is a loss of milestones, as opposed to cerebral palsy or a static disorder in which milestones are never attained.