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A ‘Medical Nightmare’—Refrigerator Mothers

Woman_fridge By Anne Dachel
 
How could doctors have gotten it SO WRONG FOR SO LONG?   Recently I heard about a PBS Point of View program called Refrigerator Mothers, produced in 2002.  The segments I found showed how autism was viewed going back to the 1950s, when cold, unaffectionate mothers were blamed for causing autism. 
 
Most interesting was the commentary by the filmmaker, J.J. Hanley, the mother of an autistic son.   She recounted that in 1996, when her son was three years old, she was also told by his doctor that she caused him to be autistic.
 
1996?  (Definitely a doctor of the old school.)  It’s important to note that 1996 wasn’t that long ago.
 
Four years later, in 2000, when my son was diagnosed with Asperger’s Syndrome, the doctor (one of the top pediatric developmental specialists in the area) told my husband and me that we were genetically mismatched and that’s why John had autism.  I wanted to know why no one else had autism among our relatives.  The doctor asked about any people in our families who acted eccentric or seemed withdrawn.  He said that they were probably autistic too. 
 
The medical establishment, which has never been alarmed over autism, has taken credit for the explosion in the numbers, trivialized its devastating effects on a child, and pretended that somehow this epidemic is the result of defective genes.  It’s clear that doctors have failed to understand autism FROM THE BEGINNING.
 
Only recently has testimony in a U.S. Senate hearing acknowledged the obvious: Autism is increasing among our children and it’s linked to environmental toxins.  The American Academy of Pediatrics and the Centers for Disease Control and Prevention don’t seem to have been informed about the experts who testified in Washington. They remain baffled about a disorder affecting one percent of our children.  Neither has ever officially called autism A CRISIS.
 
While I can’t include a link to all of Refrigerator Mothers, (I haven’t seen the whole broadcast myself) I’ve found some interesting segments.: HERE#

David E. Simpson (film maker): “Refrigerator Mothers is a portrait of seven women who represent thousands like them who during the 1950s, 60s, and early 70s, were blamed by the medical establishment and by society at large for causing the autism in their children.  It’s about the role of the expert in society and the often unequal relationship between the medical professional, the psychological professional, and the people they treat.” 

 
 
J. J. Hanley (filmmaker and mother of an autistic son) speaking in 2002: 

“My son Timothy, who is nine years old, has autism spectrum disorder.  He was born in 1993 and by the time he was three years old, we knew there was something wrong with him. 
“When I took him to our pediatrician for help, to find out what was wrong with my son, the pediatrician told me what was wrong with my son was me.

“In making this film, I want to honor this generation of women who went before me, who faced extreme isolation, who faced their child’s disorder alone, and who were shunned by their communities and who did not in the end receive the kind of support that I and my son have received, which, in essence, has saved his life.”
 
Here’s how POV promoted Refrigerators Mothers:

 “A mid-century medical nightmare is revealed in Refrigerator Mothers. Autism is one of today's fastest growing disorders, affecting 1 in 500 [2002].   A mid-century medical nightmare is revealed in Refrigerator Mothers.  It is now known to be a neurological condition, but from the 1950s through the 1970s the medical establishment mistakenly believed it had found the root cause of the disorder: poor mothering. Doctors presumed that the often obsessive behaviors of autistic children — rigid rituals, speech difficulty, self-isolation — stemmed from their mothers' emotional frigidity. Refrigerator Mothers explores the traumatic legacy of blame, guilt and self-doubt suffered by a generation of women who were branded ‘refrigerator mothers.’" 
 
And I discovered that there was even a racist element to the diagnosis of autism in the past:
 
Whites only: Racism and Autism. REFRIGERATOR MOTHERS
HERE
 
Black mother Dorothy Groomer: "I asked …if Steven had autism and it was more than one doctor.  At that time it was a team of them over at the University of Illinois.  And they said, no.  It may be an emotional disturbance, but it was not autism.  We did not fit the mold.  We did not fit the classic mold for autism—which is white, upper middle class, and very, very bright.” 
 
POV then showed us an old black and white film featuring autistic children:
 
“Jimmy (shown rocking back and forth) is an autistic child, 11 years old.  His father is a specialist in nuclear power plants. 
 
“Joseph is 7 years old.  Both of his parents are college graduates.  His father is a college professor.”
 
Dorothy Groomer continued: “It was really not a negotiable issue.  According to my doctors, my son could not be autistic.  I was not white and it was assumed that I was not educated.  Therefore, he was labeled emotionally disturbed.  Here your child has a disability that you recognize and they said no, you can't be that.  You can't even be a refrigerator mother.  The irony of it all."
 
POV told us that as far as doctors were concerned, “The general knowledge out there was that mothers were responsible for making their children autistic.”
HERE
 
After viewing these parts, all I can say is that I’m sick and tired of doctors never being right about autism.  We’ve suffered through decades of false claims.  Autism isn’t a puzzling curiosity they can guess at.  It’s human suffering on an unbelievable scale.   They told us that emotionally cold mothers made their children autistic.  This was followed by endless theories on the possible cause: older fathers, older mothers, autism genes, and TV watching. 
 
Doctors should be embarrassed about their record with autism.  It’s on a parallel with TV commercials showing us a busy doctor and announcing that more doctors smoke Camels than any other cigarette.
--
Anne Dachel is Media Editor of Age of Autism.
 
 
 

Comments

autism pundit

In every generation there seems to be yet another so-called expert that blames mothers for autism. The new theory is generally a variant of the same old recycled theory that blames poor ole mom. The most famous person to champion the term “Refrigerator Mother” was Bruno Bettleheim. The theory was that autism was caused by an emotional frigidity of the mother. As a mother who has been in the autism wars for more than 20 years, I say it’s time to clarify a few things to these luddites who always have the trappings of legitimacy, with MDs and Ph.D.s behind their names, exploiting their credentials to propagate their nonsense.

From Bettelheim in the 1950s to the latest incarnation of MDs who flog this junk using theories that have no data, there are a few things that must be emphasized. First, when a child from birth ignores everyone’s presence, cries incessantly and is up all night for years on end, to the point where the mother is barely functioning, the child’s autism is the CAUSE of the mother’s condition, not the other way around! In other words, the mother’s stress or depression does not cause autism... autism causes maternal stress and depression. Put simply, these professionals do not understand that the causal arrow goes the other way! You’d think that after a decade of post-secondary education, these so-called experts would have figured that out, but apparently not.

Also, before doctors and researchers venture into the murky waters of autism, I would suggest they read a few peer-reviewed journal articles that have been written in the last decade, and also walk a block, not a mile, in the shoes of a mother of an untreated child with autism.

Second, a theory is useless without any data supporting it. Put simply, show us the data, or put a sock in it! Since these big thinkers seem happy to posit theories that they have no plans to test and are, therefore, perennially without data to support them, let me have a go, and posit one of my own. Doctors and researchers with little talent and less integrity, tend to gravitate to fields where there is no known cause and no known cure – like autism. That way, B.S. can be purveyed with impunity, since few folks actually expect rigorous scientific standards of conduct (i.e., proper theory construction, hypothesis development, experimental design, testing, data collection, statistical analyses, presentation of results, and interpretation). In other words, where autism is concerned, it’s still the wild west of science. However, the good news is that as we learn more about the true neurobiology of autism, these ignorant pretenders will be relegated to the Flat Earth Society where they belong.

Enlightened

Strangely my father's mother truly was a refrigerator mother (and grandmother, I couldn't bear to visit her, so avoided her). My dad, now 89, fits classic ASD but at this stage of his life I wouldn't take him in for a diagnosis. I feel I carried a genetic predisposition or mitochondrial defect, even though my older sons (in their 30s now) were not affected, only the youngest who is now 16. His father also had issues, ADHD with autistic quirks. Had I known vaccines would trigger this acquired autism, I would have only agreed to pertussus at 2 weeks, and Tetnus at age 2 years. My son is recovering, high function but about 3 years delayed.

cmo

....It’s clear that doctors have failed to understand autism FROM THE BEGINNING. Great point!

Nothing is more important to the AAP than billing $200 worth of vaccines to some insurance company at a "nine minute well baby visit" ...and then setting up the next appointment.

Kristine

KimStag- your comment reminds me of a "friend" who recently told me a story of a high school acquaintance that she re-connected with on Facebook. She told the story about how in high school this woman was "horrible" snotty, mean, and now her child has a serious illness. Then she said "karma, you know?" So apparently this woman, by being a mean 14 year old, caused her child to have a serious illness. Oh and this "friend" told this TO ME of all people, knowing full well that I have a child with brain injury.

Theodore Van Oosbree

Our pediatrician back in the 90s told us that it was normal for boys to be slow to talk and not to worry (my 3 yr old son had lost speech and begun to stim). The psychologist he sent us to told us neither of our sons was autistic and that we should let them watch lots of videos with talking and singing and they would learn to talk (we're still waiting). Pay no attention to those men behind the curtain - they haven't a clue and may never get one.

Kendra Pettengill

I watched this film several years ago on Public Television and was horrified. I wondered to myself what would have happened if the epidemic we have now would have occurred then or what would have happened to all of us if this theory were still held to be true today. Tens of thousands of us only a few decades away from having our children forcibly ripped from our arms and then subjecting us to years of psychotherapy and for many "shock therapy" to try and cure us of our coldness. Then I think of the women involved on "our side" and think, "good luck with that one". Though the way we are labeled and portrayed to the general public, well....not much has changed in the eyes of some, but instead of being cold we are simply irrational, ignorant, weak, easily swayed, naieve, overly emotional, and even according to Paul Offit, "dangerous". They are still portraying us to the general public as "mentally unstable". Thank God for the internet, that is the major difference from the Bettelheim days, we can communicate around the world with each other and know the truth, and because of the truth we can stand strong. If you think Autism disrupts families now, imagine being accused of causing your child's autism, being drug off to a mental institution for shock therapy and potentially never seeing your child for years, not to mention the treatment you would receive from relatives, friends, church members, office mates, and professionals. How did spouses stand by and accept this? And they wonder why we are sometimes angry, forceful, and distrustful. Go figure!!!!

michael framson

Maybe we should send the American Psychiatric Association a trophy with a refrigerator on top for their life time achievement, honoring them for their greatest contribution to the recognition and treatment of autism.

Over bearing Mom

But it was my fault for being such a fool when it came to vaccines!
And the older he gets the more it is my fault.
Not the vaccine part of it, but I have been made to feel that I am an over protective -over bearing mother from hell. And if I could just let him go, allow him to stand on his own two feet --- that it is a sick relationship.

I get that from a lot of people, including my neighbors. I get to hear her recount the trouble she had with her duaghter but all was well when her daughter told her she needed to leave her alone, and so she did and all was well. Or how her son jsut kept messing up and he was in special ed too, but she left him on his own and he - he - he finally married his girlfriend he had been living with for 10 years after she got pregant and joined the army to support his new wife/old girl friend and new baby boy.

So all I have to do is stop interferring and let my son be on his own.

Maurine Meleck

I have seen this nightmare of a film some years back and doubt I could watch it again. The refrigerator mother theory was outrageous and the stupidity of the medical communtiy in believing it was even more outrageous.
Along with them, the government, health officials and all the pediatricians that blindly vaccinated(and still do) our children owe us enough apologies to last a lifetime.
Thanks Anne for this good piece. maurine

Paul Shapiro

Generally, we, the public assume that doctors are solvers of all problems medical. The doctors happily go along and in fact feed into our belief.

I believe that doctors are the auto mechanics of the medical field. Both read the results of the original creative work of the designers, engineers and scientists and attempt to apply it ‘COOKBOOK STYLE’. Please do not expect creative ground breaking ideas from your doctor. That is not his mandate and he is not trained to treat that way. And if by happen-chance one of these medical mechanics comes up with a new and original idea, consider it an accident.

Please we all must be leery of these doctor guys/gals, they can be dangerous to your well being!!

Stagmom

I had someone who should have been enlightened ask me what I did in a PAST LIFE to have my 3 girls. Yeah. Past life. I nearly kicked her in the teeth.

Amy

I've done some presentations at graduate special education seminars and I've had three different students tell me afterward about a woman their mother or grandmother knew in the 40's-60's, who committed suicide after being told her child's autism was her fault. It must have been unbearable to live in a time when there was nowhere to turn for support from a sane community.

Wasn't Bettleheim's degree in philosophy? and didn't he also write a paper insisting that Jews had a death-wish, that they didn't resist the Nazis because they unconsciously felt they deserved genocide? Joanne Greenberg once told me that paper was so disturbing to her that it was behind her decision to write I Never Promised You A Rose Garden, but I'm not sure if it was published in a scientific journal, or something in an interview in a magazine at the time (early 60s). He clearly had some issues, and it's tragic that his theories were accepted.

One of the families in my son's school was referred only for intensive family counseling after their 5 year old son was diagnosed, because, the doctor explained, autism was due to lack of bonding with the mother...this was in 2002...

Lesa Walsh

In 1998 when my son was 6, I was told by one of the pediatricians in our MD group that "There really isn't much you're going to be able to do for your son. You're going to have to institutionalize him soon. So, have more kids (I'd just had a miscarriage 2 weeks before) and that will help you learn to move on. Oh, and plan financially for the future so you and your son won't be a burden and a drain on society". No, I didn't cut anything important off him (I'd been an OR nurse for 20 years), but I did tell him that if he wasn't on the other side of the door in less than a minute, I would find a scalpel and cut his balls off. I escorted him out the door of the exam room and it was the 1st time I cried in front of my kid. After 13 years of bio-med, that kid still has Autism, but he's remarkably recovered. He's now a Junior in HS, on track for a regular diploma and an award winning artist. No matter how many times I tell this story, it still cuts like a knife! Oh, and that kid just ordered his HS ring at school all by himself from a design he created at home from the company's web site! That story makes me smile! :)

Kartemquin

Thanks for your post! It's great to see the interest remains in this film.

If you would like to know more, or buy the DVD, please visit:
http://kartemquin.com/films/refrigerator-mothers

Your support will help us to make more moving documentary films that challenge preconceptions and inspire activism. If you would like to screen Refrigerator Mothers in your community, please contact us.

You can also support JJ's List, created by JJ Hanley after her experience making Refrigerator Mothers. http://www.jjslist.com/

Nonnymouse

There are a lot of stories, not just here but all over, of parents who left a pediatrician (or other so-called provider). And later the parent, who already knew this, is found to have been justified - because the child is diagnosed with autism. Finally.

What I want to have happen is this: After the correct diagnosis, the parent goes back to the 'provider' and demands reimbursement of the fee for office visits where the wrong so-called diagnosis was being offered.

And I also want parents to pursue additional compensation to themselves for Failure to Diagnose.

No, I'm not a lawyer. Not married to one, don't work for one.

However, in the legal field there is a concept of "knew or should have known." These pediatricians and others should have been able to arrive at a correct diagnosis. They SHOULD HAVE KNOWN.

Their failure is not something we should be paying them for.

Mary

Not a thing of the past. The ARC in my area is holding a conference on special needs chilren. One of the talks will be about attachment and brain development. Sounds like blaming the parents again.

Lori Ann Williams

7 Years ago, I asked my Pediatrician why my 5-year-old son couldn't make eye contact. She asked if "I was the disciplinarian in my household". Since my husband travels all the time on business, I responded "yes". She told me that was probably why he couldn't make eye contact..."because he was afraid of me". A year later, he was diagnosed with autism.

His younger brother was unable to speak. The offered (at the same pediatricians office) the explaination that he had quite a few ear infections, that children develop at different speeds, and that maybe my son was just slow. (By 18-months old, the child could differentiate between a pentagon, hexagon, and a parallelagram; but couldn't have a conversation about anything,tell you his name, or even if he was hungry.) He too, was diagnosed with autism. After intense therapy, he is able to have small conversations with us now. I often wonder how much farther he would be advanced today, had he been given an accurate diagnosis back then.

As much as pediatricians knowledge of diagnosing autism has gotten better through awareness campaigns, we still have a LONG way to go.

Lori Ann

Donna L.

I think we need to create a web site/database listing the name and location of every single medical or mental health professional or therapist who has ever stated or implied that autism can in any way be blamed on the parent. We are clearly the only ones looking out for one another. If we knew who to flat out avoid, we could spare ourselves and our children from any more unnecessary grief. Enough is enough.

Alison MacNeil

I wish this was just a thing of the past. Last year a highly regarded psychologist was visiting one of our therapists to provided supervision to some of her tougher cases here in Boston. We agreed to the consult. This provider's advice to me was that my 5 yr old son needed to be in therapy by himself to talk about how I had missed all of his cues and what it was like to have a mother who didn't get him. Besides how ridiculous this would have been, unless of course the therapist wanted to spend an hour a week talking about the bus and train schedule in Boston, I thought it was an outrage. In 2010 for a well known provider to again place Autism at the feet of the mother. I am a pschyotherapist. Not only do I spend my days and nights working tirelessly to 'get' my kid, to get inside his head and to try to understand the world as he sees it. I Have done this for a living for 17 years. This stupid advice left me so cold I spent three days lying on the couch under a blanket gobsmacked with the sadness of what it must be like for my son to feel so alone with me. And I was rendered hopeless that in this day and age someone could offer such useless advice. It's one thing for ignorant family members to sting you with unhelpful and sometimes hurtful suggestions, but to have it dished out to you at $400 an hour -pitiful.

Stan

Thank you, Anne, for this excellent reminder of how 'the authorities' - especially the medical authorities - can get it so blindingly wrong.

I'm reminded of the years that the medical profession sent patients who had hypoglycemia, and consequent extreme fatigue etc., home telling them that it was all in their heads. Well; it was. Just not the way they thought.

My heart goes out to the masses of mothers, and their damaged children, who were so terribly betrayed by the western medical profession.

Professional heads should roll. Starting with the professional and government oversight authorities, who were so asleep at the switch. The switch of the nation's children from basically healthy to basically chronically ill, of a whole host of iatrogenically induced conditions.

john

Bettelheim: "The autistic child feels like everyone wants him to be dead as the Nazis indeed wanted all Jews to be dead."

Blaming the parents is one traditional distract from Iatrogenic disease. Same as Shaken Baby Syndrome and Munchausen's Syndrome by Proxy. Some MD gets the job, Meadows was the MSP man, he sat on the Gov' vax damage committee http://whale.to/a/roy_meadow.html

Bettelheim got that wrong about the Nazis too http://whale.to/b/final_solution.html


SarahS

We were told that genetics explains 65% of autism cases, by our diagnosing doctor, a developmental pediatrician and fellow of the AAP. His advice to us was "keep him safe". His only use to us was completing the paperwork to get us access to therapy from our insurance.
I'm actually surprised he didn't mention me being the cause, science PhD, white, etc...
I still have no idea where he got that number from, probably pulled it out of his a#se...

Anne McElroy Dachel

Thank you funny onesies for the entire show. http://www.snagfilms.com/films/title/refrigerator_mothers )

We're told about Dr. Bruno Bettelheim, father of the "refrigerator mom" theory. He put himself forward as an expert in the care and treatment of autistic children

He was briefly in a Nazi concentration camp during WWII.
Watch him on the Dick Cavett Show.

POV Narrator: "He wrote a book in which he said the experience he had in Dachau paralleled the experience of autistic children and he knew that autistic children must feel their parents were like Nazi prison camp guards. That was one of his key similes."

Bettelheim: "The autistic child feels like everyone wants him to be dead as the Nazis indeed wanted all Jews to be dead."

POV: "Mothers were responsible for making their children autistic. And the world fell for it."

Mother after mother recounts how each had been told by doctors that they caused their children to be autistic and they describe the humiliating atmosphere created by medical science.

They "held back from interacting and loving a child. Someone who was remote. Someone who wasn't giving."

Mothers talk about having their children taken away--isolation therapy.

Bernard Rimland is featured. He was appalled at the refrigerator mother theory.
He said there was no psychological cause. But Bettelheim had national recognition regardless.

"The last five years (said in 2002) has seen an explosion in autism and now we know there has to be an organic reason for it. There are many theories, but none of them are saying that the mothers did it."

Anne Dachel
Media

Teresa Conrick

John,

That is a great idea, having APA formally acknowledge and apologize for the harmful and brazenly incorrect roots and weeds, of the 'bad mother' nonsense. I think it is important in many ways.

julie

How could doctors get it so wrong? Easy. To get it right would be to admit that the doctors themselves, by excessive vaccination, caused this epidemic of brain- damaged children. Any bizarre or far-fetched explanation is better for them than facing that fact.

patrick

The problem is the callous disregard by the doctors of the various ailments our children suffer from and lack of proper treatment. That's where the refrigerator is.
How weak it is to blame the Mother.

Kristine

The sad irony is that it was the sheer number of cases of autism, the increase, that is what really debunks these "theories". When will we learn? Old habits die hard. Society *still* blames the parents and I believe, on some level, doctors do too. Can't happen to my family. Until it does.

funny onesies

You can watch it in it's entirety here:
http://www.snagfilms.com/films/title/refrigerator_mothers

You just have to suffer through a few commercial breaks.

I've watched it a few times. Very well done. Your heart just aches for these women.

John Gilmore

I have always thought that the American physicians, especially the psychiatrists, who I don't really consider physicians, owe people with autism, their families, and especially the mothers of people with autism an profound apology for the way they adopted and expounded the refrigerator mother theory without a scrap of evidence to support it.

Current physicians like to pretend that this incredibly damaging irresponsible, intellectually lazy and deeply misogynistic policy was from the distant past and has nothing to do with them. I think it has everything to do with current practice,

I have always thought we should have a formal campaign to demand an apology from the American Psychiatric Association to the mothers of people with autism.

MAQ  (Moms Against Quacks)

In 1997, the families of the victims of the notorious Tuskegee Institute study received a formal apology from the U.S. government.

Where is the apology owed to thousands of mothers who were blamed for their children's autism?

Incredible that Bruno Bettelheim had this kind of influence on the medical establishment, with his faked medical degree.

Steph M

I was told in 2006 by a pediatric specialist in Pittsburg that 1% of autism cases are attributed to refrigerator mothers. I left that day and never returned.

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