Remembering “Refrigerator Mothers” on Mother’s Day
May 14, 2006 by Kristina Chew, PhD
Filed under Health
Being the mother of an autistic child means being, as I posted a few months ago in Synonyms (#143) on Autismland.com:
Mother, friend, teacher, helper, caregiver, advocate, protector, defender, student, educator, playmate, actor, chef, sometimes therapist, picker-upper-after, freedom fighter, peacemaker, doctor, detective, listener, nurse, teknopoinos ["child avenger"], chauffeur, coach, companion, believer, seeker of justice, fan, parent.
As an autism mother today in 2006, I have to wonder how autism mothers in the 1950’s and 1960’s felt on Mother’s Days past. These mothers–due to the now totally discredited refrigerator mother theory of autism promulgated by Bruno Bettelheim–were made to believe they had made their children autistic.
Does a lingering–albeit unconscious–belief in the refrigerator mother theory of autism still exist? Might this be why some parents so strenuously insist that some external agent—mercury poisoning, for instance–causes a child to “become” autistic?
I send my deepest Mother’s Day wishes to all the wrongly-labelled “refrigerator mothers,” and to all autism mothers everywhere.
It still exists, in practice, let alone in veiled forms.
My mother was told within the last ten years that she caused me being autistic.
In France, and many other countries, it’s still the dominant theory.
In the mid 80s my mom was given the impression it was her fault, too. There’s a lot of things that ARE, but the autism/Rett isn’t one of them.
Though it explains why whenever anything went wrong she wailed about how she was a bad mother and everything was her fault. Hm.
Somehow I’m not surprised to hear that the “bad mother” theory is still around. Everyone says “of course we don’t believe in that like those benighted people in the 1960’s” but I see a lot of evidence for tacit belief to it.
Thanks—-
While autistic people can certainly be subject to abuse / neglect, the notion that this sort of treatment “causes” autism simply promotes the “pathologization” of autism — that is, the view of autism as a sickness seems to motivate people to look for something to blame. This is a primary issue I have with the vaccine theories and the “refrigerator mother” theories: because something (autism, and associated traits) is misunderstood, it is assumed to be some sort of disease.
Kristina, this hits home with me. It always hurts me when I think about the fact that my mom was literally told she was a “refridgerator mom” when I was three and diagnosed as being autistic. My mom was blamed for paying too much attention to the baby (my little sister). As much as my mom has mentally rejected this, I know it has stayed with her as she calls me frequently to apologize fore not giving me enough love and attention…it really hurts me when she does this. She is one of the most loving person I ever met.
Thanks, SG—-I just don’t think the refrigerator mother theory is as “dead” as some claim it to be. Whenever I read something about helping ASD children to emotionally connect, or that they are “withdrawn,” it seems to me that there are still plenty of professional and parents who think autism is an emotional disorder.
Debbie at Preemie Mum posted this experience.
http://michaelrigaud.blogspot.com/2005/10/autism-and-blame.html
I positively agree that it is wrong to blame neglect or abuse from mothers as the cause of autism.
I also admire the tenacity of the parents, the love and courage that they display.
However, I think that it is wrong to debunk trauma as the cause of autism simply because parents are afraid that they will get blamed for the disorder. In doing so, we are simply trying to sidestep an important aspect that may lead us to better understanding autism. Our own egos are perhaps getting the better of us.
In the small minority of cases, parental abuse or neglect may be the cause of autism. However in most cases, trauma could be caused by other events such as nightmares, maybe fear of vacinnations, images from a horror movie that other family members are watching, etc. We do not know what would appear traumatic to the child.
The younger the child, the less significant is the event itself as the cause of autism and the more significant is the genetic factor. This is because genes can pre-dispose a young child to perceiving an otherwise ordinary event as traumatic. So, a child with these genes can be likened to be having a time bomb, just waiting for an event to trigger the bomb.
Mr. Chiang, what is your experience with autistic children?
Actually you should purchase my book if you want to know my background. I am currently an equities analyst.
An excerpt from my book will let you in on my history:
At about eighteen years of age, I started realising that I was different from others. I grew depressed at this knowledge that I was abnormal and knew that I would never be able to assimilate into society, with this inability to manage both anxiety and hyperactivity. After visitations with various medical practitioners including psychiatrists and a neurologist (p.s. I was diagnosed as schizoid by the neurologist), I was non-the-wiser as their diagnosis did not seem to pinpoint the actual problem. At that time, I also started to read up on related mental illnesses but none of those recorded seemed to fit my profile. The closest were attention deficit hyperactivity disorder (ADHD), anxiety disorders, manic-depression, autism, asperger’s syndrome and personality disorders.
I knew that I had an anxiety disorder and depression, but I intuitively recognised that these were secondary effects of a more fundamental problem.
Initially I suspected that I was suffering from manic-depression. I subsequently recognised that I was mistaken, as my bouts of elation were milder and required some form of stimulus. This was quite different from the mania in manic depression, which is usually inexplicable, cyclical and needed no stimulus.
ADHD was discounted, as the symptoms of ADHD did not seem as disruptive to life as what I was suffering from. I also could not explain the difference between ADD and ADHD, with the former not showing the same hyperactivity symptoms as ADHD.
At that outset, post traumatic stress disorder (PTSD) did not seem likely as I did not at that time remember have recurrent flashbacks or dreams. Also there was no tangible event that happened that could have caused PTSD. For a moment, I pondered over whether the nightmare episode that I had encountered could have caused PTSD, but eventually PTSD was discounted as the direct associations of my symptoms with the nightmare episode were not obvious to me at that time because of the fragmentation of my memories.
As time passed I began to formulate the idea that my abnormality was not psychological, as the symptoms were not precipitated by my thoughts. Through this, I inferred that the cause was more likely physical. Personality disorders were discounted as I assumed such disorders are related to the person’s psyche.
As I had the impression that my symptoms started only when I was around ten years of age, I inferred that this physical change had likely taken place during that period. That was also the period when the nightmare episode happened and strange physical symptoms appeared soon after.
At the outset, autism and asperger’s syndrome did not seem likely as they were both associated with early stages of childhood development. As my affliction only started when I was about ten years old, I ruled them out as possible explanations.
Based on some knowledge I picked up on meditation and some information I obtained on the secondary “brain” known as the gut, I began to move my area of focus to the portion of the endocrine system along an imaginary path between the gut and the central nervous system. The method for the meditation which I was introduced to was to imagine an object moving along the path from the CNS to the gut. I surmised that this would aid to shift some of the chemicals from the CNS to the gut and vice versa, and reduce anxiety, one of which could be tryptophan. However, meditation can only work to reduce anxiety if the imbalance is temporary and not when it is permanent. It was along this path that I tried to design some physiotherapy that could permanently prevent the chemicals from moving between the gut to the CNS, but to no avail.
It was through God’s grace that I eventually identified the exact location that was the culprit to my anomaly. It is this area where I guess the inflammation of the serotogenic neurons had taken place and had become an unwanted source of serotonin. It was also through God’s grace that I identified the methodology that was highly effective to overcome this affliction. The location had to be precise and the methodology exact. Any small deviations would render the physiotherapy ineffective. It is expected though that the medical fraternity will in future devise a more progressive and effective method of physiotherapy.
At this point I still had no clue as to the terminology of my illness. It was God’s direction that brought me upon the knowledge of the physical effects of excess serotonin. Subsequently it was also brought to my attention that some studies had shown that autism had connections with serotogenic dysfunction. Further information on the physical side effects of autism confirmed my suspicions. These physical side effects of autism were similar to those that I experienced. With this confirmation, I became certain that I was suffering from a disorder that was on the same spectrum as autism and asperger’s syndrome.
Through the plotting of my condition along a time scale reflecting the onset of the disorder, it dawned on me that autism and asperger’s syndrome did not necessarily originate from birth or even during the early stages of a child’s development.
If autism and asperger’s syndrome did not necessarily originate from birth, there must be a continuous spectrum on which both these disorders lie. I began to wonder which disorder constituted the other end of the spectrum. I recalled reading some material on the chronic effects of PTSD. Coupled with this was the nightmare episode that seemed to have triggered my condition. Putting the two together, I realised that the chronic physiological effects of PTSD may lie on the other end of the spectrum.
If autism, asperger’s syndrome and the chronic physiological effects of PTSD are on the same spectrum of disorders, there has to be an explanation for the differences in symptoms. I hypothesised that the differences were due to the age of onset of the endocrinological malfunction. The age of onset decided the extent of impairment on the victim’s developmental skills and the probability of mental retardation.
The difficulty now is to convince the medical fraternity of my findings. I hope that those who read this material will be open-minded because this is indeed a big discovery.
I was at a mental health conference a few months back; one of the topics was mental health and autism. Someone asked a question at the end, which was basically ‘Do adoptive parents and bad mothers cause autism?’. Absolute kudos to the guy on stage – he gave a very eloquent smackdown, when you could see that he wanted to go ‘kaboom’ at this woman!
I would have liked to have heard what he said! Kudos indeed.
A friend`s son living in Peru has all the classic autistic symptoms (2 1/2 years old, perfect development till 18 mths old – then regressed, limited eye contact, doesnt respond to his name, no speech but obsessed with the alphabet and numbers, hand flapping, covers ears, licks toys and surfaces, no imaginative or role play, very sensitive to noises, in his own world, etc). His neuropediatrician has told his mother that although her son presents many of the symptoms, that he believes that it´s the lack of attention, stimulation, and affective bonds with his son that are causing this. He recommended her that she shoukd stop working for a year, and send his son to intensive therapy.
The boy has been in therapy for only three weeks now, and his whole family is now very committed to his improvement. They have seen INCREDIBLE advances, in only three weeks ( he has more eye contact, started speaking more, very affectionate with his mother – not with his father or other adults) . This is the reason why the doctor says it´s not really autism and that the boy´s behaviour is really his mothers fault, because otherwise he wouldn´t have improved so much in such a short period of time.
My question is… can a child present most of the autism symptoms, and still NOT BE AUTISTIC, but simply be a victim of a “refrigerator mom”, and the moment that this is corrected the child just dramatically improves? Because apparently that is what is going on in this case….
Is your son at home now living with you, Mia? Thank you for telling about him here.
Mia,
It’s great to hear from you and about your son—-he is just a bit younger than me. We’ve tried to bring Charlie to church and it is indeed hard for him to be quiet—-I always hope that people can be more accepting; I know Charlie is trying. Are there other family members who can help care for your son? Charlie is our only child.
I’ve never met anyone who actually blamed me for Charlie’s being autistic but other families occasionally have stories—-and a pediatrician that Charlie once had did blame me for causing, or partially causing, his motor delays.
Thank you again.
Very very sad—thank you for sharing this. Especially glad to know about how Matthew is doing—-thank you again and hope that things can only be better.
I taped that Refrigerator Mothers show that aired on PBS a few years back. The term used for the disabled back in the 60s and 70s when I was growing up was “handicapped” and I still refer to the term in reference to my sister. It seems hard to change after all these years. I lived around disabilities and never heard the word autism back then.
My mil pretty much called me one without actually saying it out loud…told me I had to spend more time with my son, work with him on projects daily, constantly talk to him, etc. Coz you know, I wasn’t doing any of that.