OLMSTED ON AUTISM: LISA JO RUDY CHANNELS BRUNO BETTELHEIM

BY DAN OLMSTED

Over at the New York Times-owned About.com, "guide to autism" (HERE) Lisa Jo Rudy has taken me on over my coverage of the Amish and autism. That's fair game.

But please read these two paragraphs and tell me if you don't think our guide believes parents are making their kids autistic.

She starts by quoting someone she identifies as Rebecca at the Clinic for Special Children in Pennsylvania Dutch Country:

"There's more of an acceptance [among the Amish] of people for
being what they are, as they are. We certainly have children with
difficulty learning - and there are special education facilities for
children who have Downs, MR, and other issues. Most families have many
children, a high rate of communication, no television; and it's
important to be able to read. Communication is very, very important. I
guess I have wondered whether the autism out there is due to lack of
personal attention and communication to that child."

Then Rudy says: "I found Rebecca's insights intriguing.

To my mind, they argue for the notion that at least some of the huge rise in
autism diagnoses may be linked as much to culture as to symptoms.
What's more, in recent months I've come to realize that a great many
of the therapies developed for autism really have just one thing in
common: when done correctly, they involve a great deal of high quality
1:1 communication with the child.

Say what? Lack of parental attention in our crazy messed-up non-Amish culture causes autism? And many treatments that work "have just one thing in common" – fixing that?

This sounds like the bad old days to me – even before the gene theory, before the "better diagnosis theory," before the cultural relativism theory – and way, way before the uniquely
rare-mito-disorder theory. This sounds like good old-fashioned parent-blaming a la Leo Kanner and especially Bruno Bettelheim (you know, parents as cold unfeeling refrigerators, mothers as uncommunicative, love-withholding monsters, kids as "empty fortresses"
retreating into their own universe).

Of course, I'm annoyed at Lisa Rudy for saying I'm wrong about the Amish, so we need to factor that in. So to see what others thought about these comments, I sent around some e-mails asking people whether this bothered them or they thought I was just pissed. I am now going to hand the microphone to several of those folks and get out of the
way:
--
Extremely offensive. It's back to Bettelheim … It's also part of what Roy Grinker the anthropologist wants to argue. There's a history of this kind of crap going on in autism in the developing world. It's all offensive.
--
It is extremely offensive and it's really baseless as far as I'm concerned.  How can you measure whether we accept our kids any more or less than another culture? Is she in our home to measure the amount of personal attention each of our children receive? And that's implying that we do not accept our children for who they are.  But the bigger more offensive and really dangerous thing she is missing here is that our kids are medically ill!

This is not about acceptance. This is not just about a "social deficit" as autism is so often referred to.  I don't know a group of parents more dedicated to fighting for acceptance, medical care, societal acceptance, etc than our very vocal group. I think our autism
community will go down in history for making major changes in laws and in policies when all is said and done. And who does she think all of the rallies, blogs, advocacy organizations, etc are dedicated to?  Who do they think this is about?  It's about our children. How much more 1:1 communication can a child have than 24/7?

Who does she think is caring for our kids if we're not, and it's implying that they are not getting personal attention?  Heck, most of us can't even find respite, so I don't know what the 1:1 thing is about.  Besides, if she's referring to ABA, it's been well documented
that ABA is pretty much ineffective in a medically ill child.

Would this discussion even be taking place, say, if someone's child had been in a car accident and needed physical therapy to walk again? Would a group of people come out saying you should accept your child now for who they are and not try to get them to walk again?  And you're wrong to take him/her to PT to help him walk again?  What's so wrong about wanting our children back?    Maybe our perseverance bothers them?  Maybe it's because we keep looking for the answers? I'm not sure.

And one last thing -- the culture-equals-rise-in-autism notion.  So, it's back to blaming parents again?  We're doing something wrong and now our children are autistic?  Is that what she's saying?
--
Hoo-boy is she insinuating not enough 1:1? Why not just say bad parenting. Is that what caused the screaming gut pain too? FYI ABA is intense rote learning to heal a damaged brain
--
Can you print "one anonymous reader of Lisa's comments exclaimed 'r u f--king kidding me?' because that is my reaction to "lack of personal attention to the child." One of my neighbors when Andrew was 2 told me years later that he thought about calling the Division of Family Services on me since I had Andrew's butt in a chair with a therapist for 20 hours a week until he was three and went to school.  His daughter was my babysitter and they were holding major discussions in their house about how much crying there was during the therapy sessions.  LJR is offensive because she believes autism is a learning disability and not a biological disorder.  Ask her if she believes brain tumors and/or strokes should just be treated with more one on one attention.
--
Lisa Jo Rudy is flailing. Her critical thinking skills aren't sophisticated enough to fully analyze the vaccine/autism issue. Where is her concern over kids' lab tests? Over parents' before-and-after videos? Scientists' clinical studies? Vaccine court and DHHS? She's nitpicking.

As the vaccine/autism evidence mounts, people will resist. They will reflexively defend the old paradigm and re-examine dead issues. Latecomers will go over old ground (how tiresome).
--
Dan Olmsted is Editor of Age of Autism

Comments

[Katie Wright]

I have to agree with A@T. Lisa Jo and Rebecca are two imbeciles. Now I have truly heard it all- the Amish have no autism because "communication is very, very important to them." Somebody call the Nobel Prize committee.

[L Land]

We call it projection when someone accuses you of doing what they are actually doing.

She says parents don't communicate, love or accept our own children with autism but she's the one that points fingers, makes all the nasty little comments and I'd bet stares at us in public.

Who's the cold and unfeeling one, again?

[Joyce]

I'll be sure never to visit that blog again but that won't be too difficult. Lisa Jo's blog was never very informative to begin with and she, quite frankly, was hard to take. (as are many of her loyal followers.)

[Terri Lewis]

Jeanne,

Thanks for the practical tip!

I'm done, too.

Terri

[Anahalia]

"I bet she's loving us and thinking of more stories to write to increase her page hits."

Isn't it morally and ethically wrong to write untruths about a condition such as autism just to make money? Guess we know the answer to that one.

There must not have been any other condition in the history of the world that has been so controversial, so debated, so denied, so heart-wrenching. I suppose the irony is that parents look forward to hearing their child speak - its the means by which you can figure out who they are, what they are like, what their dreams might be, what they might achieve in life. Snatch that away and you take away literally EVERYTHING from a parent. The mental and emotional repercussions of that particular loss is so great that its hard to put it into words. You throw yourself zealously into repair mode trying to fix the child's body and mind - all of that to just get some words that would let you glimpse into the child's inner being. Its like a craving, it seems to represent the epitome of your loss. And - getting it back, a marker of the pinnacle of success as in "YES, I do have my child back!"

[Jeanne]

Even more food for thought:

From About.Com

How Do Guides Get Compensated?

The basis of Guide compensation is year-over-year page view growth. As of 1/1/07, if your page views grow you will never make less than $725 per month and it's likely you'll make much more
than that over time (in some cases we have Guides who earn in excess of $100,000 per year).

So by viewing LJR's page, we increase her pay... I bet she's loving us and thinking of more stories to write to increase her page hits.

I don't know about you; but, I'm done.

[How to Become an About.com Guide]

How do you become an about.com Guide? You send a writing sample. Prove you know about the topic. Diva could be a guide for autism. The question is, how do you get fired?

http://beaguide.about.com/

"You're a recognized expert in your field, and you have the credentials and experience to back you up. You have professional writing experience in your area of expertise, are familiar with HTML, and love to help educate others about your topic.

If so, perhaps you have what it takes to be an About.com Guide!

About.com is the Web's leading provider of trusted information on every topic imaginable. Our expert Guides offer information and tutorials on hundreds of topics, ranging from asthma to action movies, home repair to home cooking, gadgets to getaways.

As a Guide you'll build and maintain a GuideSite, a topical section of About.com that contains:

Original content (articles, reviews, FAQs, tutorials) written by you
A blog featuring your unique voice and personality
A directory of the best content on your topic, whether it is work created by you or links to other sites
A discussion forum where you serve as community leader
All About.com Guides are freelancers who work online and set their own schedules, giving them the flexibility to log on from anywhere in the world and work at a time that is best for them. With no timesheets to fill out and no timecards to punch, working for About.com gives you the flexibility to write when you want and determine for yourself how successful you want to be.

Interested in learning more about becoming an About.com Guide? Check our list of available topics and see if one matches your passion and expertise."

[Teresa Conrick]

NYT owned....may say a lot. It is absolutely and completely wrong to even joke about parenting as a cause of autism. Reading her,Lisa (about.com guide to autism)'s, comments here does little to reflect a sense of understanding or regret either. I am offended by her lack of knowledge, judgement, and empathy. I am curious how you got your job, Lisa?

[Monica]

If I had read this at the time of Jade's dx, I would have blamed myself. Hell, until we knew what was going on, I DID blame myself. See I had 3 abdominal surgeries and could not pick Jade up for 6 weeks post surgery each time. The first surgery was when she was 8 mos, then 13 mos, then 17 mos. I thought my not being able to nurture her properly caused her symptoms.

When Jade had a reaction to the vaccines at 17 mos, I had just had surgery 1 week prior, and was not supposed to hold her (but I did that day anyway). I really could not be the mommy I felt I should be, so I really had thought the downward spiral was my fault.

You can imagine finding autism, then Bettleheim was little comfort. Quite ironic though, in learning why Jade had the adverse reaction, I learned why I was getting sick so much- genetic Primary Immunodeficiency. So glad we know the truth!

LJR, you may not have wrote that article with the intention of placing the blame on parents, but if I were new to autism, I would go cry and blame myself after reading that. You should have known what the reaction of your readers would be. Shame on you.

[Jenny]

hmmmmm... well thanks to autism my youngest son gets the shaft when it comes to my time and attention and he is the "NT" one... so, I am not buying that crap.

Also, I put on Lisa's post, I worked in a PA hospital that treated a lot of Amish. And I witnessed them being lied too and bullied into vaccines. And you can bet those babies are not vaccinated on the CDC's insane schedule
--most where vaccinated when they were brought into the ER when sick. YEAH, you read that right. the babies would be sick enough that they sought the ER and they would leave with a round of vaccines.

[BJ Johnson]

Sigh. What a grave disservice Ms. Rudy continues to do to the autism community (particulary those with newly-diagnosed kids who might benefit from biomedical intervention(s).) A real shame.

[Pamela Felice]

Interestinng, Lisa Jo has a new post up titled "No, Parents Don't Cause Autism - Though They Can Often Help to Treat It"

She explains that her statements about "treatment" should not have been insulting to anyone. Read it for yourself...now we're all just hypersensative.

[Gatogorra]

What a crock.

The famous doctor who diagnosed our twins believed in the genetic origins of autism and had published statements about how vaccines were not to blame. As he diagnosed our son, he openly scrutinized my husband and I, trying to figure out which of us was the carrier of the bum genes. Was it me, blathering away in denial and shock (aspergers!)-- or my husband, semi-catatonic with grief (HFA!)?

While this PhD and head of a department at a major medical university was trying to diagnose us as parents, he failed to notice that our daughter was also somewhere on the spectrum like her twin brother, deeming her instead a "gifted late talker"-- but that's beside the point.

Except for the fact that our "brilliant doctor" was quarantining the problem to the family of origin through the gene theory and Bettelheim quarantined using the emotional neglect theory, our doc's misperception was no different than the basic cause and effect gaff that Dr. Rimland found in Bettelheim's observations that parents weren't overly demonstrative towards their effected children. What Bettelheim failed to mention that the children in question may not have liked to be touched. I've also wondered whether the "Bettelheim parents" weren't also just displaying a social norm at the time of trying to be stoic and dignified in reaction to the endless, daily loss that we all know so well as "autism".

It's stupid in any era for people's normal, human responses to traumatic occurances to be held against them as *cause* of the thing that they're responding *to*, but it's a typical error of observation in all the "helping professions". At least Kanner-- and possibly Bettelheim-- may have formed views out of a reactionary impulse to counter the much more terrifying eugenic theories of their eras. Leo Kanner had debated a eugenicist named Kennedy (not one of *the* Kennedys as far as I know) who seriously and openly (and to an appreciative American mainstream medical audience) proposed gassing and lethal injection for cognitively disabled children. Kanner pleaded in an article for an American medical journal in the 1940s that psychiatry should always be "dipped in the milk of human kindness" and that nazi Germany had certainly not bettered itself morally by its T4 euthanization program. Given equal weight in the same edition of this medical journal was Kennedy's article calling for the termination of "lives not worth living". In other words, Kanner (and to a lesser extent, Bettelheim) lived in times when American society had come gravely close to approving forced sterilization or euthanasia for the "mentally disabled", so they had a lot to react to and distantiate from, possibly to the point of being blinded by it.

But the only bogeyman that Lisa Jo is "reactionary" against is the concept that our sanctified mainstream medicinal system may have caused autism. In light of all the recently emerging evidence and science supporting a link between autism and vaccines, her theory is basically the same as OJ's "mysterious drug dealer" murder theory of his wife: just smoke and red herrings.

[doodle]

"Third, many types of autism therapy are, in essence, intensive communication and social education. "

So the Amish by their social nature, are doing a form af ABA? Does this mean that the autism that does appear is proactively reduced and the kids just all appear healthy and normal?

Kind of hard when the autism observed is associated with actual chromosomal disorders, like fragile X and not idiopathic autism like oh...., everyone, is talking about.

from your own article citation Lisa,

"Strauss said the clinic treats “syndromic autism”, where autism as part of a more complicated clinical spectrum that can include mental retardation, chromosomal abnormalities, unusual facial features, and short stature, as well as Fragile X syndrome. “We see quite a few Amish children with Fragile X,” he said."

The whole attack on Mr Olmstead's article is not really going anywhere once you even think about the basics.

1. Amish get some vaccinations, clearly. Do they get all of them or just Measles once and the other biggies like polio? Do they even need to follow a schedule for entrace into schools - of course not. So at best they have a lower vaccination rate and at worst, they likely get a fraction of vaccinations.

2. Amish do not have idiopahic autism according to your source, the kind that everyone is concerned about where kids have no obvious chromosomal defect.

The argument that "Amish have Autism" TM , from autismnewsbeat, is just wrong, and foolish, and so 2007.

If you want to avoid becoming irrelevant like the folks from that site, you may want to brush up on your analytical skills.

[Kelli Ann Davis]

“….will only be a distraction from the real human tragedy that so many families face if we pay serious attention to these arguments.”

Mark,

You’ve just defined the solution: Don’t pay *serious* attention to her arguments.

This is one journalist with an opinion – why should we expend our energies defending ourselves in regards to what she thinks when there is more productive work to do?

Now, if it was a government official who has influence on policy I could understand the need to invest in the dialogue.

But it isn’t.

Bottom Line: She’s going to write whatever she wants regardless of what you or anyone else says and what she “thinks” isn’t going to sway me (and I’m guessing a whole slew of other folks as well) one little bit!

Kelli

[ElizaCassandra]

From "across the pond" I apologise to Lisa Jo Rudy for the last two sentences of my previous posting and withdraw them. However, the remainder of my posting still stands. At seventeen my son is leading a "normal" teenage life while my daughter's "challenging behaviour" is the cause of great worry to her family and the professionals dealing with her. The inevitable comparisons have become increasingly painful as the years pass by.

[Mark]

Lisa,
The best approach is to just say, I was wrong and I'm sorry.

You are misrepresenting Dan's work with the Amish. And you have added no new insight be simply observing that vaccination rates in the Amish have been rising.

Please re-enter the real world, there is no such thing as "an extremely mild case of autism." If you are making a reference to Asperger's syndrome, please use that terminology intead. That's a separable issue. But the increasingly bizarre, retrospectively diagnosed world of putative autism cases (who for some reason want to fight for their right to define their identities in terms of their "autism") will only be a distraction from the real human tragedy that so many families face if we pay serious attention to these arguments. I don't and none of us should waste much breath dealing with the idea that autism could ever be "extremely mild."

And by featuring neo-Bettelheimism you honor it. Again, there's a simple way to deal with what you did. Apologize.

[Rhonda]

Yes, just like the Cornell T.V. study...we parents are to blame. But why is it that my child could recite her alphabet at 10 mos., including the sound of all the letters, why did she read her first word at thirteen months, and able to count to 50 before age one??? Who taught that to her? I DID! I read to her every night. Carried her around on my waist in a wrap while I did everything cooing to her and talking to her, nursing her. My husband and I were uber attentive...but then, suddenly...

No more eye contact
Loss of language
Inability to say the names of familiar things
Uncontrollable tempertantrums

I guess I just lost interest in her and just decided to let the TV raise her after doting on her for the first year and a half!!!???

[Diane]

First I'm not defending the statement - just perhaps putting perspective to it...

My hunch - no proof - just speculation - that "Rebecca" is probably Mennonite - a more wordly version of the Amish, but still not all secular. These groups are very closely intertwined. Overall, they try to separate from worldly influences (there are also degrees of Mennonite as well). I would harbor a guess that not one person at the clinic would know an autistic child if they saw one. I wouldn't be at all suprised if they actually think instead that diabilities are penalties from God. (Again - not my beliefs). They do very much take care of their own when something happens (a very wonderful phenomenon). To Amish and many Mennonite, outside influences are bad. For example, having a power line into a house is evil. So TV would be considered an evil.

That being said, living just on the outskirts of Lancaster Counyt (PA) when something medically serious in the sect occurs - they do rely on major medicine. I see lots of them at the children's hosptial in Hershey - many also go to Philly. So, they do believe and seek medical care - unlike perhaps the more devout religious cults (TX?).

Certainly, we all know that bad parenting is the cause. Unless somehow I subconsciously decided to treat my ASD twin worse than his typical brother - which BTW are identical twins!

[Pamela Felice]

O.K. This was so absurd that I could only bring myself to read the first 3 paragraphs.

My daughter is in a beautiful recovery thanks to DAN! and I can guarantee that there is no change in my "communication" style before and after each round of yeast treatment...yeast comes back, we get angry child, yeast is treated we have easy going kid again. My communication style does not change pre treatment to post treatment. Same goes with c diffe. C diffe = OCD + echolalia...treatment (flagyl) = no more OCD + normal speech...no change in Mommy.

Pre Autism regression I was a stay at home Mom who limited junk foods and television.

Oh well if they can't call us refrigerator Moms any more they'll just find another way to blame us.