Media headlines on stories describing an early childhood intervention connected better outcomes with better parenting and, by implication, poorer outcomes with worse parenting. The boldest headlines reanimated the still-warm corpse of the “Refrigerator Parent” school of autism blame, with vocal supporters filling the comment sections. It has to be stressed that the headlines were crass and insensitive, but the content of the articles was not all bad. The original research is interesting and makes no judgement of parenting qualities, or bad parenting as a cause of autism, or psychotherapy as a cure for autistic children or their parents.
Headlines ranged from the sober “Study offers potential breakthrough in care of children with autism” (the Guardian) to strongly implied blame and cure: “‘Super-parenting’ improves children’s autism” (BBC), “‘Super-parenting’ is the first therapy ‘that actually helps BEAT autism’” (Sun) and “First, treat the parents” (Economist). Any anger should be turned towards the thoughtless headline writers because the therapy describes an intervention (PACT) that examines parent-child interaction to help parents detect and reciprocate attempts at interaction by autistic children. These interactions may be subtle, non-obvious and unconventional.
I happened to be reading “In the Absence of Light” by Adrienne Wilder (2015) at the time, in which the character Grant expresses a neat summary of my own response, “love has nothing to do with it. If it did, every autistic child on this planet would excel. The truth is, most don’t.”
It is really worth reading the (open) paper, Pickles et al (2016) “Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial”. A comprehensive description of the PACT intervention in the Supplementary Material of Green et al (2010) Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial, which is also open. Michelle Dawson (2010) wrote that “The PACT entails an early autism intervention that was not widely promoted as effective or essential before it was fairly tested. That is a first in the history of autism research. It may also be the largest RCT of any kind of autism intervention ever published” http://autismcrisis.blogspot.ie/2010/08/making-autism-research-history.html. The field of early intervention is littered with hundreds of poorly conducted studies with unclear outcome measures, small sample sizes and unstandardised methods — the Cochrane Library identifies only 5 early intensive behavioural intervention (EIBI) publications to be ‘adequate’. The PACT authors describe their intervention as ‘parent-led’, but it might even be considered ‘child-led’ in that the parents are guided to respond to the child’s interactions, whatever they are.
Having read the intervention design, it is worth revisiting the excellent BBC documentary “Autism: Challenging Behaviour” (currently accessible on Vimeo) to observe how the ABA therapists filmed responded to (or rejected) interaction initiated by autistic children. One of the most moving moments is about ten minutes in, when Tobias places his forehead on the therapist’s knee and is forcibly sat upright to resume his clapping-response regime. The failure to recognise and respond to Tobias’ interaction is stark.
You could just stop reading here and go to the delightful therapy guide by Florica Stone (2003) “Autism — The Eighth Colour of the Rainbow: Learn to Speak Autistic” https://www.amazon.com/Autism-Eighth-Colour-Rainbow-Autistic/dp/1843101823. I did have to mentally edit out all references to ‘love’, but found the responsiveness of her methods to the child very positively written. If you want to read further, there is some history of parent blame in the autism industries.
The ugly history of parent blame
From the very earliest descriptions of what is now the autism spectrum, the aetiology was posited as a mixture of heredity and environment, with ‘cold’ parents one of the common factors between those who develop autism. Hans Asperger (1938) presented a type of child with a primarily hereditary condition that is exacerbated by environment and responsive to therapy. He described the mothers as cold and ”unfemininely intellectual”, claiming the fact “that the boy is an only child is the first tinkling sound of his constitution, his heredity! The mother’s nature is characteristically very similar to her son: she is quite unfemininely intellectual, eccentric and has a restricted relationship with her child. It is obvious this woman has inherited the same psychopathic condition, not applying warm mothering and finding pain and inconvenience in multiple pregnancies and drudgery in raising many children. Her nature explains the difficulties of the boy’s nature. So we often see that things that seem at first to be environmentally determined, are in reality substantively determined constitutionally.” Hans Asperger, writing in the year of the Nazi annexation of Austria, made reference to the forthcoming introduction of the 1933 German “Law for the Prevention of Hereditarily Diseased Offspring” [das Gesetz zur Verhütung erbkranken Nachwuchses], which would compel sterilisation (and, later, euthanasia under Aktion T4) of ‘genetically unsound’ people such as his patients, in whom he saw worth.
In his very first paper on what became classic or Kanner autism, Leo Kanner (1943) wrote “One other fact stands out prominently. In the whole group, there are very few really warm-hearted fathers and mothers … The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients. We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handicaps.” The parent blame became more explicit in Leon Eisenberg & Leo Kanner (1956) stating “These children were, in general, conceived less out of a positive desire than out of an acceptance of childbearing as part of the marital contract.” The interaction of poor parenting with unknown hereditary factors remained, with Leon Eisenberg (1957) writing “An analysis of the behavior of the fathers of autistic children reveals the evidence of serious personality difficulties that markedly impair the fulfillment of a normal paternal role and that seriously influence the pattern of family living in a detrimental way. It suggests a need to reconsider the pat formulation that ascribes to maternal inadequacies alone the psychopathology in the schizophrenic child. The observation that the same parents who give rise to autistic progeny rear normal offspring implies the existence of other factors, residing perhaps in the child, that are necessary before psychosis appears.”
Psychotherapists and early behaviourists were enthusiastic proponents of the parent-mediated exacerbation of autism, at its worst insisting that parentectomy (removing the child to an institution) and various forms of rebirthing and aversive therapies would ‘recover’ the child trapped inside the autistic. They did not, of course, have any demonstrable success. The iconic figurehead of the psychotherapy movement was the successfully self-promoting Bruno Bettelheim, who makes a characteristic cameo in the 1983 Woody Allen film “Zelig”. In 1960 Kanner was featured in Time magazine in an article headlined “The child is father” (25 July 1960) which wrote “there is one type of child to whom even Dr. Kanner cannot get close. All too often this child is the offspring of highly organized, professional parents, cold and rational — the type that Dr. Kanner describes as “just happening to defrost enough to produce a child.” The youngster is unable, because of regression or a failure in emotional development, to establish normal relations with his parents or other people.” This established the term “Refrigerator Mother” in the public’s mind as the cause of autism, and few experts or parents challenged it.
Bernard Rimland wrote his classic book ”Infantile Autism” in 1964, exploding the myth of refrigerator parenting and commenting (1981) about the quality of autism scholarship “I found the field chaotic; a comprehensive review was needed to pull together what little was known. The level of scholarship was abysmal. Murky psychoanalytic interpretations masqueraded as truth. Authors built incoherent theories on dubious interpretations of isolated events, liberally misquoting each other in the process. The field was dominated by psychoanalysts like Bruno Bettelheim, who asserted confidently that autistic children were normal youngsters who had emotionally repudiated their unloving families. These theories, presented as fact, deterred biological research and added guilt and untold anguish to the heavy burdens already borne by the mothers of autistic children.” Of Bettelheim and the cold parenting myth he wrote “The impact of the book was dramatic. In 1978, a national magazine reported that 90 percent of the people in the field felt that Rimland had ‘blown Bettelheim’s theories to hell.’ I have often been told that Infantile Autism was pivotal in redirecting the entire field of psychology from its morbid preoccupation with psychodynamics toward a more productive interest in biology. While my two main goals, exposing the psycho-genie myth and encouraging biological research, were realized, my attempt to clarify the muddled problem of diagnosing autism has had little success.”
Bruno Bettelheim’s response to Rimland was The Empty Fortress (1967) in which he wrote (p22 in my copy) “Some victims of the concentration camps had lost their humanity in response to extreme situations. Autistic children withdraw from the world before their humanity ever really develops. Could there be any connection, I wondered, between the impact of the two kinds of inhumanity I had known — one inflicted for political reasons on victims of a social system, the other perhaps a self-chosen state of dehumanization (if one may speak of choice in an infant’s responses)?” and (p83) “Here I wish to stress again the essential difference between the plight of these prisoners and the conditions that lead to autism and schizophrenia in children: namely that the child never had a chance to develop much of a personality. Entailed therefore are all the differences of intellectual maturity. Thus to develop childhood schizophrenia it is enough that the infant be convinced that his life is run by insensitive, irrational powers who have absolute control of his life and death. For the normal adult to suddenly develop schizophrenic-like reactions, this must actually be true, as it was in the camps.” Parents were not merely cold, but resembled (in the child’s mind), the very worst image of inhumanity available to Bettelheim. He is clearly writing about the child’s beliefs, in an undeveloped mind, and not writing about the reality of the parents’ qualities, but nevertheless did not correct even the worst misinterpretations and exaggerations of his theories, and continued to practice parentectomy.
Leo Kanner recanted his beliefs (1969) and delivered an apology for the hurt heaped on parents, stating “From the very first publication until the last, I spoke of this condition in no uncertain terms as “innate.” But because I described some of the characteristics of the parents as persons, I was misquoted often as having said that “it is all the parents’ fault.” (First annual meeting of the Autism Society of America, 1969).
The ugly present of parent blame
Many professionals cling to variants of parent blame to this day. Frances Tustin (1990) wrote about ‘maternal absent-mindedness’ causing autistic reactions, “In his comprehensive study of autism from an organic and behaviourist point of view, Rimland (1964) found that in cases of identical twins, if one was autistic, the other twin would be autistic also. This implies that there is a possible genetic factor in some cases of autism. (If this is the case in those children who respond to psychotherapy, it would seem to have been open to modification. The flexibility of human nature is on our side). Clinical work indicates that psychogenic autistic reactions are the result of the concurrence and complicated interaction of constitutional and environmental factors, the balance of which is different in each case. The same type of maternal ‘absent-mindedness’ can produce different reactions in different children.” In our own professional backwaters, Tony Humphreys stirred up immense anger by claiming that autism is only a theory, a term that stood for parenting failure and absence of love, and continued to defend his statements in the face of obvious hurt (“Autism is a theory” – Tony Humphreys defends controversial article http://www.thejournal.ie/autism-is-a-theory-tony-humphreys-defends-controversial-examiner-article-364800-Feb2012/). In his now expunged and cancelled Irish Examiner column Humpreys stated “What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominantly in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.” (archived at Irish Autism Action: https://www.facebook.com/notes/irish-autism-action/core-connection-an-article-in-printed-edition-of-irish-examiner-3rd-feb/359928427353789/).
I know from unpleasant personal experience that these beliefs are commonly held by psychotherapists and counsellors, having been told explicitly that my Asperger syndrome was caused by my ‘cold mother’, by early separations and by our joint failure to form attachment. Others in counselling have made similar statements and most of the counsellors I have attended try to unearth the original trauma that could be somehow excised, curing my autism. One therapist, a little like Miggs in “Silence of the Lambs”, created the most intensely horrific scenarios in an attempt to make me cry, because crying was the first and most vital step to recovering from trauma. The approach is obviously not successful and, far worse, is a hurtful and traumatic ordeal to inflict on anyone, but especially on people with slow emotional processing.
The parent blaming mentality is also expressed over and over in reports about tentative correlations between autism and all kinds of exposures, more often mother-blame than father-blame. One example was eviscerated by Victoria White (2014) in “We need to stop playing blame game over having autistic children” (30 October 2014 http://www.irishexaminer.com/viewpoints/columnists/victoria-white/we-need-to-stop-playing-blame-game-over-having-autistic-children-295610.html).
The fallout for parents
The impact of blaming parents for autism and the failure of years of institutional parentectomy is brought to life with great power and warmth in the US documentary “Refrigerator Mothers” (2003) http://www.imdb.com/title/tt0458234/, in which a group of women and their now-adult children talk about the lifelong impact of therapist’s misguided beliefs. They also describe their adult lives and aspirations, and to what degree the parents have been able to re-establish relationships damaged by toxic professional interference.
Powerful depictions of parental causation have fueled the public image of bad parenting. In “A Child is Waiting” (1963) http://www.imdb.com/title/tt0056930/ Judy Garland recovers the lost child within the unloved and rejected autistic Reuben through love and undivided attention. In “Change of Habit” (1969) http://www.imdb.com/title/tt0065537/ Mary Tyler Moore brings Dr Elvis Presley around to trying rage-reduction therapy on abandoned autistic Amanda, who can then learn to drop her anger barriers and accept love. In both “The Boy Who Could Fly” (1986) http://www.imdb.com/title/tt0090768/ and “House of Cards” (also titled “Before I Wake”) (1993) the child retreats into an autistic shell following the trauma of bereavement — Kathleen Turner’s bizarre recreation of the moment of Sally’s fathers death in ”House of Cards” is by far the most impressively misguided recovery of the lost autistic in film.
The ”Refrigerator Mother” hypothesis may be as dead as Bruno Bettelheim (1903-1990), but its legacy is as alive as his prolific books and influence. His methods are still practised by professional counsellors and psychotherapists, to the detriment of their patients. The public imagination of autism as a behavioural abnormality created by bad parenting styles is reflected over and over in headlines about autism research and interventions. Underneath many of the apoplexy-inducing headlines (as with the Super-parenting) there can be a useful report to read and reflect on.
- Asperger (1938) “Das psychisch abnorme Kind [The psychically abnormal child]”. Wiener Klinische Wochenschrift [Vienna Clinical Weekly], 51:1314-7.
- Kanner (1943). “Autistic disturbances of affective contact”. Nerv Child 2: 217-50.
- Eisenberg (1957) The Fathers Of Autistic Children. American Journal of Orthopsychiatry, 27(4):715-724.
- Eisenberg & Kanner (1956) Childhood Schizophrenia Symposium, 1955 — 6. Early Infantile Autism, 1943-55. American Journal of Orthopsychiatry, 26(3):556-566.
- Tustin (1990) The Protective Shell in Children and Adults. Karnac Books.