Notes from a "Refrigerator Mom" by Caryn Haluska • All About Autism Series 2011

Notes from a "Refrigerator Mom" by Caryn Haluska • All About Autism Series 2011

This post is generously submitted for the 2011 All About Autism Series ~ by Caryn Haluska:

In 1949, Dr. Leo Kanner wrote a paper, in which he cited “refrigerator mothers” as the cause of the autism in children ~ attributing autism to “genuine lack of maternal warmth”. In an interview for Time magazine in 1960, Dr. Kanner described mothers of autistic children as “just happening to defrost enough to produce a child.”

Bruno Bettleheim wrote articles in the 1950s and 1960s that widely promoted this theory and, following Kanner’s lead, Bettleheim never took into account that fact that these same mothers also had unaffected children.

Dr. Kanner’s theory was disproved through Dr. Bernard Rimland’s tireless efforts beginning in the 1970s. The tragedy is, even today, more than 60 years after Dr. Kanner’s paper was published, there are still those that are quick to place blame on the parent (s). How many parents have been told that their child’s struggles stem from a lack of discipline, rather than autism or sensory issues? The only difference is, today we’re at the other extreme. Parents are being told they are TOO accommodating, and “spoiling” their child.

Genuine meltdowns are being dismissed as “temper tantrums”. Parents are being advised not to give in. For all the promotion for early intervention, it’s a bear to get doctors, therapists, and teachers to listen, truly listen, when a parent says there is something wrong. Sensory issues are being dismissed as stubbornness or lack of motivation on the part of the child. Children who are non-verbal and not hitting other milestones are not immediately referred to any sort of early intervention program. A child who is a non-seeker is clearly, in the minds some, not being played with enough. Not being challenged. May possibly be the child of a negligent parent.

If your child has eye contact, and does not object to being snuggled, there are those that will argue all day with you, and tell you that there is no way this child could be “on the spectrum”. But “this child” has parents that know him, and they know that there is something really not right. His parents will throw themselves into the whirlwind of begging, pleading, and threatening, until they can find a doctor or therapist that will honestly evaluate their child. They will suddenly find themselves online at all hours of the night and day, as well as at the library, checking out stacks of books on diet, therapy, and research on Autism Spectrum, SPD, GFCF, ABA, and a myriad of other related subjects.

The parents of “this child” will lose even more sleep than before, as they wrack their brains, trying to absorb all the new information, and make sense of it. They will have enormous phone bills, as a result of calling any and everyone they hear about, to get their child evaluated and set up with therapy. They will pay out of pocket for therapies and interventions not covered by their insurance. They will try restrictive diets. They will try… everything. They will go into extreme debt with their local hospital in less than two years.. debt from which they will never recover.

Allergists, pediatric neurologists, developmental pediatricians, radiologists, occupational therapists, speech therapists, and physical therapists will be considered part of “this child’s” team. Medical histories for “this child” will be stored in the brains of his parents, to be recited on command with each new provider. Frequent fights for insurance coverage will ensue.

There will be successes. There will be regression. There will be the day when a “real” diagnosis is in the foreseeable future. But until then, parents are still treated with the assumption that they are just this generation’s version of the Refrigerator Mom. There will always be fights in the medical community, and in circles of parents, educators, therapists, about the true cause of autism.

You know what? I don’t care. I don’t. I don’t care what caused my child’s autism. He is so much more than that. But. I will move heaven and earth to get him what he needs, you can take that to the bank.

The mantra du jour is “Awareness is not enough”. It’s dead on. That’s why today’s “Refrigerator Parents” have bent over backwards – and will continue to do so until all the help they need is handed to them with the diagnosis – just to make sure everyone’s not just aware of “this child”, but is helping “this child” become…a child.

Caryn of Living With Logan is the stay at home mother of 7 children, living in Southern Utah and devouring all the knowledge she can in the speed of light. Her son Logan is diagnosed with high functioning Autism and Sensory Processing Disorder. Logan also has unexplained seizures and multiple severe allergies causing him to maintain a VERY restrictive gfcfsfcf diet (gluten, casein, soy, egg and corn free).

I read this an am immediately outraged by the dismissal and constant blaming, even in the past, on parenting when some things clearly aren’t parenting. I’m also honored to be amongst other parents like Caryn who work so hard to get children who need a voice every opportunity to find it. Thanks Caryn.

What are your thoughts?

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  1. Allie April 27, 2011 at 1:51 pm - Reply

    I had never even heard of this term until yesterday. I find it funny considering every mom I know that has an autistic child is incredibly loving and gives up so much of his or herself to fight for their child. People can call me whatever they want, I know my little boy knows his mama loves him and that’s what matters.

  2. Jenny April 27, 2011 at 5:46 pm - Reply

    Well-written, Caryn, and you made me cry! I was sitting here, picking out the sentences I liked the most, and then the very last one made me cry.

  3. Karen V. April 27, 2011 at 5:47 pm - Reply

    Why is it that so many medical professionals will ignore obvious signs of autism in favor of just about anything else? I think, in part, is a lack of education of medical personnel. In order to diagnose, refer and treat you have to have that knowledge – more than just a day or two in a course back in med school.

    I find the same thing with some of the other people who should know better in the health care profession such as dentists. And in the educational field – speech therapists (school employees). Ignorance is rampant everywhere still. I so agree with you Caryn (and appreciate Gina’s efforts in this series).

    We have so much more knowledge and experience with our kids and our understanding of what they go through that it is hard to accept how the labeled “experts” could be so dense sometimes. (I do come across very good professionals but am still surprised at how many in the fields who should know -don’t.)

    Great Post!

    • April Gear April 28, 2011 at 12:42 am - Reply

      I agree with Karen V. She totally puts how I feel to words.

      Caryn Haluska- It’s sad after how many years we still haven’t learned anything about how to stop blaming the parents. I hope in my lifetime that we learn how to stop blaming and find the truth to the causes of autism and other learning disorders.

  4. Big Daddy April 27, 2011 at 8:59 pm - Reply

    I’m so with you. Don’t care what caused it. Let’s just make life as good as it can be for my kid and others like him.

  5. Rhiannon Fieri May 7, 2011 at 1:45 pm - Reply

    Refrigerator mamma? I think not! I’m the whole kitchen, baby. I cool things off. I keep them safe until things are ready for them. I warm things up. I’m ready to set the world on fire. I clean things, prepare things, pull together scattered elements until they transform into something satisfying……..

    Yeah, I could keep going. Of course, really, I just kind of want to whack certain “professionals” upside the head with my cast iron wok.

    One of the problems with the way health care has to work for a lot of people, today, is that everything (which there is a vague hope of someone other than your suffocating-in-the-quicksand-of-medical-debt-self paying for at least part of) goes by referral. Thing is, the people that can recommend those referrals, and the people that can give them, are rarely the people trained enough in the issues to see why a referral would be “validated” — ARGHH!

    I once tweeted something along the lines of, “Your child is more than a complaint to file. They are more than blame waiting to be placed.” In my EXTREMELY PROFESSIONAL MOMMY OPINION, my child’s autism and sensory issues were in no way caused by any lack of love, thankyouverymuch….in fact, we have been given to understand that they and his related neuro-issues are the direct result of his prematurity and early medical schmedical, and there was no point in pointless fretting over injections, genetics, or whatever else….but even if that was not the case, I just can’t imagine dedicating my life, dedicating HIS life, to the question of “How this happened” — Yes, it happened. Yes, it has happened to countless others, and yes, it is happening to countless more. There is value in trying to understand what’s behind it. But there is so much more value than that to the lives they already have, and the lives they might have, than obsessing over how to spare anyone else, just that!

  6. autism pundit October 13, 2011 at 2:09 pm - Reply

    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.

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