BRAWD AUTISTICO "Refrigerator Mother"

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“SBIA! YLI!” an inquisitive toddler calls out to his mother, pointing in awe at the magnificent tower of blocks he’s managed to put together. The young mother looks up from her magazine, flashes him a warm smile and reminds him to play nicely with his new friend.

“Dwi yn!” he assures her, then looks over at the young girl building her own tower and promptly hands her an additional block, which she duly thanks him for.

“Hogyn da!” his mother winks at him. The girl’s mother, in return, looks over at the boy’s mother and smiles. Then a third voice jumps in- yet another young mother, though it would appear that her child is not present. She chuckles affectionately, gesturing with her head in the direction of the playing children. The other mums smile back at her then go back to their magazines.

The childless woman gives out a sigh. She looks at the children with her head tilted to the side slightly, considering them. Her lips are shut tight, though she is still smiling. There is a sadness in her eyes that does not quite fit the scene, and the longer she stares at the children, the more emotion is drained from her expression. Slowly, her smile fades away, her shoulders sink down into the uncomfortable chair and she suddenly looks very tired.

Then a young nurse enters the waiting room and calls out her name, snapping her out of her trance. She takes a second to mentally return to the room, then looks over at the nurse, smiles weakly and follows her into another room, desperately filling the void with nervous laughter and inquiries into the well-being of the nurse’s parents. It would appear that the two know each other- the way they speak suggests that this is a small town and that they are vaguely familiar with each other, perhaps from school.

“Yn fama, yli…” the young nurse stops at the door, knocks, then lets the young mother inside. She wishes her luck then goes trotting back down the hall. The room is small and suffocating, walls adorned with bright posters aimed at children, shelves stacked with academic books and papers. An older woman sits at a desk, greeting her, though the welcome isn’t exactly a warm one. She gestures for the young woman to sit.

The consultant appears to be in her late forties or early fifties- she goes through the standard set of questions with the young woman, never taking her eyes off the paper in front of her. The young mother clasps her hands together and answers each one in a monotonous tone. It seems doubtful from her mannerisms that she knows the other woman.

Dull ground all covered, the consultant pushes back her swivel chair and pulls open a heavy metallic cabinet drawer. She huffs and puffs as she does so, taking out a thick file of papers. She then shuts the drawer and drops the file on her desk. Licking her fingers, she flicks through the pages, stopping every now and then to read a note or two. The young mother sits up in her chair, trying to see what was written in the file.

The consultant gives out a long sigh. “…so, as you know, we’ve ran a series of tests and observations on your son over the last few weeks; we sent a therapist over to your house to watch you play with him, observing your interactions- though, I have to say, the notes indicate that you husband seemed to perform better in this than you did…”

“Oh, yes, well- I get really- I’m shy, you see, and I- dunno, I just hate having people watching over me when I’m doing something, you know? I’m usually much better than that, I just- it didn’t feel natural, you know?”

The consultant watches her carefully but gives no reaction. Instead, she looks back down at her notes and continues to flick through the pages, reading out dates of consultations and notes on my brothers’ cognitive abilities; “…July nineteenth, identifying shapes… second of August, reluctance to commit to eye contact…”

As she does so, the young nurse from before enters the room and goes about filing paperwork as quietly as she can. She moves slowly, as though she’s purposefully stalling.

Eventually, the consultant shuts the file and gives out a long sigh. Clasping her hands together, she asks the young mother “… there are studies which suggest that some children experience developmental delay due to a lack of emotional stimulation from the mother… do you play with him much? Show him enough affection? Hold him, hug him, show an interest when he approaches you…?”

The young woman seems flustered- lips quivering, heart racing, her brain tries to configure whether she should be angry or upset- has she shown him enough affection? Could she have done something differently? What did she do wrong?!

“…do you tell him you love him? Are you there for him emotionally?” the consultant goes on.

“I- uh…”

“Now just a minute!” the young nurse speaks up. “I know this young lady, and I can assure you that she gives her son just as much love and affection as the next mum! In fact, she has another son, and he’s doing just fine! This is not her fault!”

The young mother looks up at her friend as she speaks and smiles warmly, tears forming in her eyes. She whispers “Diolch” to her and turns back to face the consultant, who’s own expression is difficult to read. But she seems to accept the nurse’s comment and takes note.

“So… is there something wrong with him, then?”

They were still running ‘tests’, but eventually of course, my brother was diagnosed with autism. Mam told me this story several years ago, but at some point, my own brain filled in a few blanks. A few weeks ago, I asked Mam if I could write a post about her experience and if she could go over a few details for me. For years, I had it in my head that the consultant had asked her “Have you ever heard of ‘refrigerator motherhood’…?”

However, when I asked Mam about it, she didn’t have a clue what I was on about- for many years, ‘Refrigerator Mother’ was a controversial term attributed to a woman who’s child had ASD, and has since become a widely discredited theory into the cause of autism. At some point, whenever it was that I became aware of this term, my brain attributed it to Mam’s story and although I was wrong, the accusations made at the time certainly hinted that the consultant shared this belief, even in the mid-Nineties. What this shows, to me, is what little we know about autism, and how relatively new research into the condition truly is. It also occurred to me that there may still be parents out there today whom are being blamed for their child’s autism. As such, I think it would be beneficial to talk about this controversial train of thought, as well as offer a platform whereby parents who have had similar experiences can share their stories.

Let us look, then, at the history of ‘Refrigerator Mothers’…

The term originated in the 1940s and became a label based on, though it has since been discredited by most (but not all) medical health professionals, that autistic traits and behaviours stem from the emotional frigidity of the individual’s mother.

It claimed that these mothers were cold, distant and rejecting of their child, thus denying that child the chance to properly develop human bonds. In a nutshell, it claims that autism is ‘psychogenic’ (i.e. is caused by a lack of nurture, not by some natural occurrence). Consequently, thousands of mothers of autistic children were made to feel guilty about their child’s condition, many who went to their graves still believing that they were to ‘blame’.

In 2002, Kartemquin Films released Refrigerator Mothers, a documentary which looks at the American mothers of the Fifties and Sixties and how the blame put upon them affected them for the rest of their lives. The PBS website (being the network on which the documentary was first aired) pitched the film as thus: "Though wholly discredited today, the 'refrigerator mother' diagnosis condemned thousands of autistic children to questionable therapies, and their mothers to a long nightmare of self-doubt and guilt. In Refrigerator Mothers, the new film by David E. Simpson, J. J. Hanley and Gordon Quinn, and a Kartemquin Educational Films production, these mothers tell their story for the first time."

For anyone interested in this subject, I highly recommend that you watch that documentary. But for now, here’s a clip:

We can thank a man called ‘Bruno Bettelheim’, a University of Chicago professor, for first coining this term (though other leading psychoanalysts at the time also championed the theory). In fact, the theory was embraced by the medical establishment for many years, and went on largely unopposed until the mid-Sixties. Thus, many books from that era blamed autism on a lack of parental affection.

Then, in 1964, Bernard Rimland, a psychologist with an autistic son, called it out when he released his book, ‘Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behaviour’, which attacked the theory directly and called for a different approach.

In response, Bettelheim released ‘The Empty Fortress: Infantile Autism and the Birth of the Self’, which compared autism to being a prisoner in a concentration camp: “The difference between the plight of prisoners in a concentration camp and the conditions which lead to Autism and schizophrenia in children is, of course, that the child has never had a previous chance to develop much of a personality.”

Due to Bettelheim being a former prisoner of war at Dachau in the Second World War, people considered this opinion to be of authority, and so the book became an instant hit, and Bettelheim was heralded as a leading public figure on autism right up until his death, at which point it was revealed that he had, in fact, plagiarized others’ work and falsified his credentials. His character was further scrutinized when three ex-patients of his questioned his work and referred to him as a “cruel tyrant”.

Indeed, much like the leading researcher who proposed a link between autism and the MMR vaccine, it would appear that it was Bettelheim’s ego and unprofessionalism which helped spawn one of the most controversial and damning theories regarding the cause of autism.

But he wasn’t the only professional who believed this theory. In 1949, Leo Kanner (who first coined the term ‘autism’) released a paper in which he suggested that autism may be related to a “genuine lack of maternal warmth”. Furthermore, in a magazine interview in 1960, Kanner went on to describe mothers of autistic children as “…just happening to defrost enough to produce a child”.

Although Bettelheim was the main facilitator, Kanner was also instrumental in framing the ‘Refrigerator Mother’ theory. He wrote numerous articles which placed direct blame on the child’s parents. However, in an address to the first meeting of what is now the Autism Society of America, he attempted to white-wash his previous convictions, saying: “…because I described some of the characteristics of the parents… I was misquoted often as having said that 'it is all the parents' fault'."

Hmm… even so, dozens of other psychologists still agreed with the theory, and many still do today, arguing that the facts are there for all to see, clear as day. Frances Tustin, who devoted her entire life to the subject, wrote in 1991: “One must note that Autism is one of a number of children’s neurological disorders of psychogenic nature, i.e., caused by abusive and traumatic treatment of infants [...]. There is persistent denial by American society of the causes of damage to millions of children who are thus traumatized and brain damaged as a consequence of cruel treatment by parents who are otherwise too busy to love and care for their babies”.

Alice Miller, a leading expert on child abuse, has maintained that Autism is psychogenic, also saying in 1991: "I spent a day observing what happened to the group… what became clearer and clearer as the day went on was that all these children had a serious history of suffering behind them… in my conversations with the therapists and mothers, I inquired about the life stories of individual children. The facts confirmed my hunch. No one, however, was willing to take these facts seriously"

Then, in 2006, Jay Joseph released a book which challenges the current and very popular genetic theory of autism: “Looking specifically at Autism, despite the near-unanimous opinion that it has an important genetic component, the evidence cited in support of this position is stunningly weak. It consists mainly of family studies, which cannot disentangle the potential influences of genes and environment, and four small methodologically flawed twin studies whose results can be explained by non-genetic factors. Not surprisingly, then, years of efforts to find ‘Autism genes’ have come up empty.”

Indeed, despite the current genetic research on autism, the ‘Refrigerator Mother’ theory, now widely opposed in the United States, retains some support in Europe, and is also still believed to be the ultimate cause of autism in South Korea.

So, if the empirical evidence into the genetic nature of autism is yet to produce anything concrete, then why was the ‘Refrigerator Mother’ theory eventually discredited by most psychologists, and at which point did it become such a controversial statement?

According to Peter Breggin’s ‘Toxic Psychiatry’ (1991), the theory was largely abandoned not due to further scientific discoveries nor more likely theories being proposed, but in actual fact, due to pressure from various parents’ organizations. This fact may be cause for concern for many parents, but as always with autism, it isn’t as simple as “the science says so, but you’re not ready to hear it”, for although recent studies have shown that parental warmth, praise, and the quality of the relationship are all associated with reductions of behavioural problems in autistic adolescents and adults, and that parental criticism (“tough love”) is associated with negative behaviours, they fail to explain why the child is autistic in the first place.

Furthermore, studies have shown that, as infants and toddlers, autistic children on average don’t differ that much from ‘neuro-typical children’ when considering parental attachment behaviour. For those who display less of an attachment further on down the line, learning difficulties and problems with their emotional intelligence are more likely to be the cause, rather than the parents’ behaviour.

Also, for those who argue that the facts are clear to see and that research done into the genetic roots of autism has so far proven to be unreliable, consider the fact that one or both parents of children with autism are more likely to have autism than the parents of ‘neuro-typical children’. It is also important to remember that many of the studies into the psychogenic nature of autism are also methodologically flawed, in that many were biased. Some argue that the ‘evidence’ these studies produced are mere representations of the observer’s personal opinion. Furthermore, consider my own mother’s reaction to being filmed interacting with her child- it is unnatural, and her behaviour during that session therefore did not represent her ‘normal behaviour’, therefore rendering the results invalid.

Some researchers further argue that the emotionally-distant behaviour observed in the parents in these studies may actually be indications of their own autism, and that the results actually reinforce the theory that autism is a genetic condition.

Kanner, who first coined the term ‘autism’, eventually went back on his words regarding the ‘Refrigerator Mother’ theory, though not entirely- he concluded that it is probable to be a combination of both nature and nurture- a safe common ground, where many researchers have since joined him. Indeed, if you Google the theory, you will find just as many articles championing it as you would ones which consider it to be an old-fashioned, almost Dickensian myth that should never be welcomed back onto the modern scientific world stage. But it is here, and furthermore, it is likely to hang around for quite some time, along with the claims that autism is caused by vaccinations, air pollution, diet pollution, genes, and all the other possibilities… until we know more.

Basically, the present general consensus is thus: there is evidence to suggest that autism is caused by the parents’ behaviour in terms of observational reports, but there is also plenty of evidence to discredit this notion, but there are methodological issues with the studies conducted by both sides. However, until scientists can pin-point the ‘Autism Gene’, then the theory that autism is a genetic condition cannot claim to be the one true cause of the condition. Furthermore, current social pressures restrict further research into autism’s psychogenic characteristics, and the same pressures influence many researchers to ‘sit on the fence’ rather than risk being discredited further down the line.

In a nutshell, ‘cold parents’ cannot be blamed entirely for their child’s autism, though behaving this way could affect the child’s development, as it would with any ‘neuro-typical’ child. But ultimately, there is no proof that this is the cause of autism in the first place. Furthermore, as far as most of the scientific community is concerned, blaming parents for their child’s autism simply isn’t cool.

And as far as Mam is concerned, I can confirm that the young nurse who defended her that day was right in every sense of the word- Mam has been nothing but loving, supportive and engaging with my brother and I throughout our entire lives. Today, whenever I pay them a visit, my own ‘observations’ see nothing less than a healthy, affectionate mother-and-son relationship, something we have both had with Mam our entire lives.

Studies can suggest what they want, and it certainly feels strange rooting for a theory that suggests that I am carrying an ‘Autistic Gene’, but in this particular case, the ‘Refrigerator Mother’ theory can do one… Mam can rest assured this Mother’s Day that she couldn’t be a better mum even if she tried.

Caru chi Mam, diolch am bob dim!

-YOUR TURN-

Thanks for reading.

I’m interested to know if there are any parents of autistic children out there who were blamed for their child’s condition, and how that affected them…?

Also, is there anyone out there who believes in the ‘Refrigerator Mother’ theory, or who does not believe that autism is a genetic condition?

Diolch,

Russ

REFERENCES

Autism, PDD-NOS & Asperger's fact sheets | "Refrigerator mothers" - a discredited cause of Autism (autism-help.org)

Refrigerator Mothers (TV Movie 2003) - IMDb

Refrigerator mother theory - Wikipedia

Why "Refrigerator" Mothers Were Blamed for Autism (verywellhealth.com)

REFRIGERATOR MOTHERS - YouTube

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