Wednesday, December 4, 2013
Speak Roughly to Your Little Boy, and Beat Him When He Sneezes: More on "Festhaltetherapien", Edited by Ute Benz
A couple of weeks ago, I commented on an on-line sample from a new German book, Festhaltetherapien:Ein Plaedoyer gegen umstrittene Therapieverfahren, edited by Ute Benz. I have now received a copy of the book and am making my way painfully through it-- I began by looking up three words in every paragraph and am now down to two for most paragraphs, and even an occasional paragraph where (I think) I understand everything.
I didn’t begin at the beginning, but wanted to look at a chapter by Ute Benz on the historical development of Holding Therapies (pp. 121-143). (I should emphasize here that the title is in the plural, and that although the book focuses to a considerable extent on the treatment as done by Jirina Prekop and Martha Welch, in fact there are other methods that use restraint on children in almost the same way as Prekop and Welch.) I am going to translate some parts of this chapter, but I do want to note that I have not asked permission to do so. I assume that the short sections I will present, and the fact that I have no commercial interest here, will make this acceptable, but if there are any objections from authors or publisher I will naturally take the post down.
I’ll begin with Benz’s description of Prekop’s holding method, which its proponents recommend for autistic children, for oppositional children, and for “any child who needs it”. “The picture of the classical holding scene looks like this: a boy or girl sits or lies on a mat with the entire body held tightly by adults, the mother and/or father and perhaps a third or fourth helper, so that the child can no longer move, but can only cry out. For the child to scream and cry during the procedure is considered normal and even desirable as the expression of emotion belonging to the method, so crying must be provoked if a child becomes compliant too quickly. This is to dissolve repressions. The child’s crying is much more easily tolerated by the parents when many children are treated and cry simultaneously. If a child immediately becomes still and resigned to his fate or goes to sleep or looks around the room, he is practicing a defense against the treatment and must be provoked in order to break through the defense.”
“When Holding Therapy is done in the home, the parents are warned to close the windows, so that neighbors will not hear the sound of screaming and call the police. Because the delaying tactics of the restrained child may cause him to scratch, bite, hit, or kick, a certain position needs to be taken, so there are no bruises as visible signs of mistreatment. The child must cross his hands and legs in a sort of straitjacket position and sit straddling the lap of the adult. His head must be laid or pressed against the crook of the adult’s neck. … the child must not be let go under any circumstances, such as begging, yelling, screaming , or desperately crying, even if he needs to go to the toilet, his nose runs, or he becomes sick, or when both bodies are bathed in sweat, or when the child trembles from stress or is hungry or thirsty. All these things are done in typical evasive maneuvers [N.B. Benz is describing Prekop’s viewpoint, not her own opinion!] that must be overcome in the course of the process so that the goal of a tractable child is reached.” This goal is shown when the child allows eye contact as the parents wish it, lets himself be caressed, and says things like “I love you” or promises desired behavior. As Benz notes later, this end is thought to justify the means.
Benz, who estimates 10,000 cases of this treatment in Germany and Austria over the last 30 years, also notes people who have contacted her to ask for help or explanations. (She also notes that few German psychotherapists know about Holding Therapy or even know it exists.) In 2004, she was contacted by a divorced father who had custody of a seven-year-old boy; the boy was refusing to visit his mother. The boy told his father that the mother would restrain him while he lay on the floor, would stroke him and whisper “I am your mother, I love you.” Benz was also contacted by a town counselor who was concerned about accusations of mistreatment against a staff member in a children’s home, where there had already been repeated indications of trouble. The accused person had already resigned, but the town council now needed to review over a hundred videotapes although they did not know anything about the theory and practice of Holding Therapy. In 2011 Benz was contacted by a 27-year-old woman from the Netherlands, who had been given intensive Holding Therapy for years as treatment for cerebral palsy. For the first four years holding was done three times a day, which was later reduced to three times a week. At age 20 she had serious problems with being near other people and with physical contact. Her doctor advised her to seek therapy but could not say where to go.
Benz describes a number of similar cases who have contacted her, but as far as I have read does not suggest specific techniques for treating these effects of Holding Therapy, although she does note that practitioners need to explore whether new patients have been subjected to this treatment. As I have noted before, in one case I know in the United States, a young woman who as a child was subjected to treatment of the Prekop-Welch type suffered increasingly severe anxiety attacks in her 20s, but was relieved by desensitization treatment focusing on her memories of the treatment, particularly the screams of other children in the room.
I must say that distressing as I find treatment of this type for autistic children, the idea of trying to apply it to someone with cerebral palsy is really beyond anything I have encountered before. One wonders whether these people would use holding for appendicitis! Surely declarations of intense pain and vomiting could be interpreted as defensive delaying actions, too … and no doubt similar interpretations have been made by some practitioners.
In a later post, I want to go into what Benz has to say about the use of similar techniques by occupational therapists in Germany.
Wednesday, November 27, 2013
I hate the term Parental Alienation Syndrome (PAS). Of course a parent can do and say things that encourage children to feel alienated from the other parent (just as a parent can do or say things that alienate children from himself or herself). Children can be alienated to a greater or lesser degree by many factors, and I would hazard the guess that all children at all times have some preference for one parent over the other, although the preference may change with age and events. When parents separate or divorce, it would be virtuous for both of them to remember what they used to like about the other parent, and to encourage the children to maintain a positive relationship. Some people do the opposite, but their actions and the children’s responses are not part of a “syndrome”, a term that tries to sound as if there is solid scientific evidence behind the use of the PAS label.
A lot of people other than myself have also rejected the PAS concept. As a result, instead of accusing a divorcing co-parent of causing the children’s alienation, there may be an accusation of failing to promote the children’s relationship with the other parent. When the accused parent denies that this was the case, the conclusion may be that he or she is “in denial” and must go into therapy in order to acknowledge the actions and understand the reason for them. It may be ruled that until this is accomplished, there can be little or no contact with the children.( I am wondering, by the way, whether a request that the other parent have supervised rather than unsupervised visitation may be enough to trigger the accusation.)
This does not leave much of an option for a person who actually did not fail to promote the relationship, does it?
I have in mind two cases that almost exactly followed this pattern, and one other that has some similarities. All are cases where a parent denies having done what she is accused of (they all happen to be “she”), and is sent for therapy to enable her to “confess”, and, I suppose, be shriven. If she really did wrong, of course, this speaks badly for her character, so she should not have much contact; if she says she didn’t, that means she’s lying, confused,or mentally ill, so again she should not have much contact. To be accused is to be convicted, it would appear.
In one case in Canada, the parents separated when the children were about one and two years old. The mother asked for supervised visitation with the father, who sought the help of a psychotherapy group. Father’s attorney claimed Parental Alienation Syndrome and full custody was given to the father, with the order that mother must undergo psychotherapy in order to acknowledge her alienating behavior and treat whatever problem caused it. Until this is done she is not to have contact with the children, nor may her parents see them. Mother denies having caused alienation and argues that if the children are alienated, it is father’s own behavior that has done this. The costs of psychotherapy are in any case impossible for her to pay.
In a second case in the U.S., the parents separated when the children were almost two and almost 4, following revelations of father’s use of prostitutes. Father did not want to divorce. Mother asked for supervised visitation because father had allowed one child to play with an electronic device on which father had downloaded pornography. Mother took the children to her family’s home in Canada, while father petitioned a U.S court for custody. Mother has just been told that custody is to be given to the father because she failed to promote the father-child relationship during the separation, and that she must go into therapy so she can acknowledge and work through the problem. The children must go to their father by Jan. 1, giving them one month to prepare for this major change. If mother stays where she is, she may see the children once a month and Skype with them every other day (a decision that ignores the usual recommendation for overnights equivalent in number to the child’s age in years); if she follows the court’s directive and also moves to the father’s chosen city, she may have 50/50 custody. She denies that she failed to promote the relationship.
The third case is different, and I have written about it here before (http://childmyths.blogspot.com/2013/01/kafka-again-more-on-capture-of-child.html). In this case, the mother asked a couple (the man being the father of one of her children) to care for two preschoolers for some days. When she returned, the couple refused to give them up. Years have passed in a legal battle over this which has taken all of mother’s savings. The children have been in an unconventional form of therapy and one is in residential treatment against mother’s wishes. The therapists say, and the courts agree, that the mother must have been abusive, because the children are in problematic mental health; nothing in their early medical or educational records indicates this. The mother denies that she was neglectful or abusive, and this is interpreted as evidence that she must have been so. The plan at this point appears to be to terminate her parental rights and to “free” one of the children for adoption by an as yet unknown family.
Do all these cases remind anyone of anything? For me, they are quite reminiscent of the Recovered Memory Therapy scandal of the ‘90s, in which failure to remember sexual abuse was counted as evidence of abuse, as heavily or more so than memories. Accused parents who denied abuse were also told that they certainly could not see their children unless they confessed their misdeeds; those who confessed falsely out of desperation (or were convinced that their lack of memory meant they were guilty) could still not be with the children and often lost their jobs and other resources as well.
It’s time that the courts dropped the ‘70s pop psychology belief that denying something is evidence that it’s true. Honestly, life isn’t all in our unconscious minds and motivations. And a reality-based request for supervised visitation is not alienation, in any case.
Last weekend, my husband and I visited friends in another state, a family that has one 9-year-old child, a boy adopted from Latin America when he was 11 months old. On Monday morning, I saw an interesting little scene: before young Phineas (which I’ll call him because it’s pretty obvious that it isn’t his name) was about to leave for the school bus, his mother called him to give goodbye kisses to my husband and me, because we were about to go home, and then she wanted a hug and kiss for herself. Phineas came to her and let her put her arms around him, but he turned his face away with a blank, withdrawn expression and did not participate.
I was struck by the resemblance between Phineas’s behavior and the failure to be affectionate “on the parent’s terms” that proponents of Attachment Therapy regard as a symptom of Reactive Attachment Disorder (or of their notional entity, Attachment Disorder). And of course there were various other cherries that could be picked to build support for this diagnosis: separation from the birth mother very early; care by a foster family, then separation from them for placement with his adoptive parents. He even had to be told not to be quite so rough with the dog on Sunday afternoon.
So,shall we jump to the conclusion that Phineas is a sad case of RAD, or AD? Let me offer some alternative explanatory factors.
First, let me point out that nine is an age when most children begin to look outward from the family and concern themselves less with their parents and more with their peers. The hugs and kisses that they used to like so much now become more formalized, except perhaps at bedtime. Rough-and-tumble play is very much part of their lives, and they may need to be reminded that pets don’t communicate in the same ways their friends do.
In addition, Phineas’s life has had some bumps in it over the last two years. His developmental pathway had been very smooth in every way, until two events occurred a couple of years ago. The first was that his mother, who is a medical professional, developed an allergy to latex that was of life-threatening proportions. If Phineas had touched rubber bands or latex balloons and then touched her or kissed her, she had a reaction that required a visit to the emergency room, often, of course, with Phineas in tow. Even a visit to a store that had a display of latex balloons could do this, and Phineas became a balloon-detecter, looking around him carefully as they entered each new place. On a couple of occasions, balloons at Phineas’s school meant that his mother had to leave quickly, and there was much correspondence as the mother asked school staff to help her by excluding latex balloons . If the balloons were there, she could not go to the school for classroom visits or parties or many of the events other parents attended (and Phineas’s father’s job rarely gave him the chance to do these things).
At that point, Phineas received a head injury in a playground accident and suffered from post-concussion syndrome that continued over more than a year. He could not tolerate loud noises or crowds, cried easily, and was afraid of another blow to his head. His school attendance had to be managed carefully. And of course this was all complicated by the fact that his mother could not go with him to a doctor’s office unless she knew it was latex-safe, so even his medical care had additional complications. (He also had a medical problem involving a mass on a testicle, which fortunately resolved without further treatment.)
Last summer, just as the effects of the concussion finally seemed to be over, two elderly, much-loved members of the family died, and Phineas’s maternal grandmother had two heart attacks. To help deal with this, his mother went away for two weeks at a time to the neighboring state where her mother lives, leaving Phineas with his father-- the best possible situation for him, but also the first real separation he had had from her.
A week ago, Phineas’s school started a new fund-raising project, making and selling necklaces made of stretchy bands-- latex, of course. His mother told him she would be fine if he did that as long as he changed his clothes when he came home and put them in the washer so she did not have to touch them. But on the school bus he had to sit next to a boy who tends to bully, and when the boy pulled out his rubber bands, Phineas told him “don’t touch me with those, I don’t want to get latex on me. It makes my mother sick. She might even die.” The other child, not surprisingly for him, took this as provocation and rubbed the bands all over Phineas’s shirt, saying “I’m killing your mother!”. Phineas got off the bus in a storm of tears and told his mother “I don’t want you to die! Please don’t die!”
A few days later, Phineas turned his head away when his mother wanted to kiss him goodbye before he went to school. Do we have to look to an attachment disorder to explain this? I think not! This child is intensely attached to his mother, and not unrealistically afraid of losing her. What can he possibly do to feel better about this? His only option is to try to avoid the vulnerability he feels-- or at least to try to act as if he isn’t vulnerable. To interpret this behavior as meaning a lack of attachment would be absurd, and to attempt to treat it by placing him in “therapeutic foster care” would simply exacerbate his fear.
Am I saying that there is no such thing as Reactive Attachment Disorder? Not exactly; I think there are behaviors of quite young children that stem from disturbed attachment relationships. But when we see years of typical development, and then “aloofness” in family relationships, I believe we do well to examine these in the context of all the child’s experiences, both early and recent. Most contextual factors may not be as obvious as they are in Phineas’s case, but they need to be searched for before we assume that attachment is the problem.
Monday, November 18, 2013
When I was commenting on Kathryn Joyce’s Slate article about the terrible life and death of Hana Williams last week, I was struggling to think of a reason why adoptive parents would try to care for more children, and more challenging children, than common sense would say anyone could manage effectively. It’s clear, as Kathryn and other writers have frequently pointed out, that fundamentalist Christian beliefs have often driven the growth of “megafamilies”-- although in cases like that of the Schultzes in Tennessee a few years ago, it was not God but Mammon that was probably the motivating factor. Still, there are many fundamentalist Christian families who have adopted some children, but stopped while they were still in control of the situation-- so why do some go on and on? In my earlier post, I speculated that there might be some form of emotional disturbance that would create a powerful, anxiety-based drive for more and more children-- but even in talking about this, I realized that I was trying to separate some aspects of megafamily adoption from religious beliefs, in the hope of identifying some characteristic of potential adoptive parents that could be used to keep their family size within manageable limits.
While reading about the Williams family, I noticed particular statements about the adoptive parents’ emotional reactions to pictures or information about come children-- that their hearts went out to Hana, for example. This stayed in my mind as I went on to read a second article about a megafamily, or, as the author Maggie Jones called it, a “supersize” family (www.nytimes.com/2013/11/17/magazine/god-called-them-to-adopt-and-adopt-and-adopts.html?_r=0). So far, I’m delighted to say, this family has not had a tragic history, although the adopted children come from difficult histories of their own.
According to Jones, the adoptive mother of this family “latched onto the idea of adopting from foster care after hearing an ad on K-LOVE, a [Denver area] Christian radio station, about a new organization… that was helping Christians adopt foster kids… ‘Has God been calling you to adopt?’ the voice-over asked.” Jones also noted that of “the dozens of evangelical and conservative Christian parents I spoke to, many said that church sermons, Christian radio shows or other Christian campaigns, including Focus on the Family’s national foster-to-adopt program, pushed them to adopt.”
Why were these ads and sermons so effective? Presumably, Christian adopters are not more susceptible to persuasion in a general way than other people are—they don’t, I suppose, buy more from catalogs or e-mail ads than most of us. Can it be that there is something in their belief system that makes them more easily persuaded to adopt, and adopt more and more? I think there are a couple of points of belief that do have this impact.
One of the points is institutionalized to some extent because of its appearance in the New Testament. James 1:27 tells Christians to care for distressed orphans and widows. (As others have pointed out, the widows seem to be getting pretty short shrift, but that’s a whole different issue). The form that care should take is not described, and in the past contributions to missionaries and orphanages were generally considered to put a person in compliance with this admonition. Today, as Kathryn Joyce pointed out in The child catchers, care for orphans is conflated with the Great Commission of spreading the Gospel, and for many the child’s conversion to Christianity is as important a goal as relieving physical distress. (One can see why this is the case, given the belief system.)
A second point of belief has become part of one type of Christian belief system over the last hundred years, in spite of the rejection of this idea by mainstream churches. This is the belief that miraculous events, of the types described in the Bible, can still occur today for people who are committed to a system that is variously described as charismatic or Pentecostal. Charismatic believers consider that they can experience or carry out supernatural events like those described as occurring for Jesus’ followers after his death. These include the ability to detect evil spirits and to exorcise them-- an ability to be expected after one is shown to be part of the system by “speaking in tongues”.
Of the phenomena to be expected by a convinced charismatic, a superlatively important one is to be spoken to by God, who will indicate his wishes for a person. The K-LOVE ad literally referred to this: “Has God been calling you to adopt?”
The idea of a direct message from God is a difficult one for nonbelievers to understand, and this is partly because even when joking about this we tend to think of a spoken message of the kind we would receive from another person. Gary Trudeau made much of this idea several years ago in showing his reporter Rick Redfern at a press conference where God spoke to the person being interviewed-- but “only on background. This was not for attribution.”
But charismatics do not necessarily expect a message from God to come in the form of a voice they can hear. It is more likely to be in the form of a “word of knowledge”. According to www.christcenteredmall.com/teachings/gifts/word-of-knowledge.htm, a word of knowledge is “a definite conviction, impression, or knowing that comes to you in a similitude (a mental picture), a dream, through a vision, or by a Scripture that is quickened to you. It is supernatural insight or understanding of circumstances, situations, problems, or a body of facts by revelation; that is, without assistance by any human resource but solely by divine aid.” If I understand this definition, it means that a divine message could come in the form of preoccupation with an idea or text, as well as by intense emotional responses that are experienced as conviction. I don’t understand to what extent self-editing or examination of conviction and impressions is acceptable, and to what extent it would be considered as disobedience to the divine message. It would seem, though, that all that is needed to identify a word of knowledge is a sense of certainty-- or, in the title of Pirandello’s play, Right You Are If You Think You Are.
Mr. and Mrs. Williams reported the sense that their “hearts went out” when they saw Hana’s pre-adoption photograph. Did they identify this experience as a word of knowledge or a divine command, I wonder? Similarly, the family Maggie Jones wrote about, when they were reluctant to adopt more children. received an e-mailed picture from an adoption caseworker, which they said “pulled them in”. Did they too identify as a divine message the compassionate impulse that most of us feel toward children in trouble ? If so, perhaps we have an explanation of why some adoptive parents do go on accumulating children, sometimes with obviously tragic outcome, sometimes, perhaps, with unknown impacts on the children and the adoptive parents themselves.
What should we do, then? Can we possibly ask potential adoptive parents if they have charismatic beliefs that might affect how they manage their families? No, of course not, and I don’t think even the most militant atheist would care to countenance such a question and its influence on adoption decisions. (Presumably most of us would not want free-thinking or any other view of life to prevent us from adopting.)
However, we can limit the size of adoptive and foster families as we limit the size of other care groups. For example, in many states, family day care homes (services that care for young children in the caregiver’s residence) are limited in the number of children to be cared for and the age range of those children. In New Jersey, family day care providers may not care for more than three children under a year of age, or more than four children under two years of age, of whom no more than two may be under one year. If one or more children under 6 are present as well as those younger children, a second caregiver must be present as well as the primary caregiver. Interestingly, with respect to the family described by Maggie Jones, the New Jersey guidelines for family day care prohibit leaving children alone with an assistant under the age of 18 except in an emergency, and forbids children under 16 from working so many hours that schoolwork is affected-- whereas Jones’ article describes a daughter now 18 who has been driving siblings to school and changing one child’s tracheostomy dressing, apparently for some time.
Whatever the religious or personal motives for the creation of megafamilies, it would seem that we already have a template for limiting them. Like so many other issues, however, applying the template requires political will, and acceptance of conflict with some adoptive parents-- and, no doubt,some adoption caseworkers.
Wednesday, November 13, 2013
A new book, Festhaltetherapie: Ein Pladoyer Gegen Umstritten Therapie…. (Holding Therapy: An Argument Against Controversial Therapies) was published in 2013, and I thank Mrs. Alena Bilkova for calling it to my attention. I hope to get in touch with the editor, Dr. Ute Benz, but I haven’t managed this yet (maybe LinkedIn will do it?).
Festhaltetherapie is a treatment that resembles American “rage-reduction therapy” and other methods that use physical restraint of children in the belief that these procedures have therapeutic effects on psychological problems. Unlike the “classic” American holding therapy, Festhaltetherapie (or, to give its Czech abbreviation, TPO) does not hold the child in the therapist’s lap, use provocative physical prods, or demand that the child shout slogans about wanting to kill people. Festhaltetherapie involves a parent holding a child tightly while the parent expresses feelings about the child and the child cries and struggles, until both are exhausted. Young children are held on the lap facing the parent (usually the mother), but larger children lie on the back with the mother face-to-face on top of them, restraining their hands with her own. Festhaltetherapie is used with autistic children and those who are oppositional by Jirina Prekopova, the Czech proponent of this treatment, but her American counterpart, Martha Welch, now uses her technique “Prolonged Parent-Child Embrace” for treatment of Reactive Attachment Disorder (although she originally saw it as a treatment for autism).
In the 1980s, Prekopova and some German colleagues presented some weak research purporting to give scientific support to the effectiveness of Festhaltetherapie. Before her return to the Czech Republic, however, Prekopova became acquainted with the spiritualist family therapist Burt Hellinger, and her TPO approach now eschews scientific evidence and bases the treatment entirely on the “flow of love” through non-material channels. Prekopova has adopted Hellinger’s view of a hierarchical, patriarchal family power structure that can be healthy only if the child submits to parents completely-- and, by the way, if wives are submissive to husbands. Prekopova now presents Festhaltetherapie as a “lifestyle”, not a treatment, but others continue to promote it as a treatment for autism.
Dr. Ute Bemz and her colleagues wrote their book on Festhaltetherapie in protest against the use of a treatment that is not only ineffective but painful and distressing to children and to families. I have ordered the book from Amazon, but don’t have it yet-- however, from material at http://www.psychosozial-verlag.de/catalog/product_info.php/products-id/2290 I can see a series of intriguing chapters on this little-discussed topic. Here are some chapter titles, in my own clumsy translation (I am translating Festhaltetherapie as holding therapy):
“Power and authority as a therapeutic principle? Methods and psychodynamics of holding”
“Possibilities and limits of parent-infant-toddler psychotherapy”
“Holding therapy in the market of the education industry”
“The attraction of holding therapy for people in the helping professions with the example of occupational therapy”
“Long-term consequences of holding therapy”
“Unmasked pictures. Prekopova in action”
“Consequences and lengthy healing processes in psychotherapy”
“Critical observations on a faulty theory from an analytic perspective”
“ ‘We meant well. Is there trauma in holding therapy?’ Experiences of holding therapy in professional and family contexts.”
“If parents only want the best. Conversation with a mother who believed in holding therapy.”
Of course I can’t tell the contents of these chapters from their titles, but it would appear that they include something I have never seen published before, information from one or more parents who have experienced holding therapy from the parental side. Although people concerned about these restraint therapies ordinarily concentrate on the painful experiences of the child undergoing treatment, as well as with the later anxiety and post-traumatic phenomena reported by adults who were treated when they were children, it seems probable that some parents carrying out holding therapy may also be traumatized as they are instructed to ignore their child’s patent distress.
I also look forward to reading the comments connecting holding therapy with occupational therapy, a discipline that has offered some extraordinarily helpful techniques for children but has also been prone to theories with little empirical support.
A sample of Dr. Benz’s book can be seen at http://www.psychosozial-verlag.de//pdfs/leseprobe/2290.pdf. I’ll translate (again clumsily) a few important remarks:
Bernd Ahrbeck states: “Holding therapy is no safe undertaking. Forcing of attachment on children who have at their disposal no reliable attachment is full of risks. The probability is high that old traumas will be reactivated and new ones established. There should be no illusions about the authoritarian character of holding therapy, even if its proponents are constantly declaring their good intentions and celebrating this treatment as an especially humane method. Anyone who has seen the published videos of holding therapy will not be able to avoid shuddering.
Michael Krentz writes: “The practice of holding therapy, carried on with trivializing ideological-esoteric foundations or camouflaged under veiled terms as ‘supportive and attachment-based pedagogy’ or as ‘attachment holding’ or as ‘reconciliation therapy’, harms the psychological development of the child over the long term.”
If anyone can correct my translations I would appreciate it. I am not sure whether Gewalt in this context should be translated as “abuse” rather than “power”.
Tuesday, November 12, 2013
Kathryn Joyce, the author of The child catchers and other publications about child abuse associated with fundamentalist religious convictions, has published a heartbreaking narrative about the death of Hana Williams, a 13-year-old adoptee from Ethiopia (http://www.slate.com/articles/double_x/doublex/2013/11/hana_williams_the_tragic_death_of_an_ethiopian_adoptee_and_how_it_could.html). The story is truly a dreadful one and involves years of mistreatment culminating in Hana’s death from exposure and hypothermia, for which the adoptive parents have been convicted and given prison sentences of many years.
Hana’s life in a family of nine children had been ruled by the infamous book To train up a child, by Michael and Debi Pearl, which advocates punishments such as thrashing with plastic plumbing supply line from the age of four months (yes, months). The punishments she experienced, which also included being confined in small or isolated spaces and made to shower with the garden hose outdoors, were inflicted for getting homework wrong, standing in the wrong place, cutting the grass too short, and “sneaking” food (this last being a frequent theme in abuse of foster and adopted children). Her death from hypothermia occurred after hours without shelter in drizzly 40-degree F. weather; her adoptive mother, Carri Williams, no doubt was unaware that a person does not have to literally freeze to death, but can die as a result of lowered body temperature at temperatures far above the freezing point. Death caused or facilitated by hypothermia has occurred in other similar cases, like the death of the Russian adoptee Viktor Matthey (or, commonly, the deaths of boaters who fall overboard in cold waters).
Kathryn Joyce’s article connects the Williams’s adoptions, and the abuse of Hana and other children, with the parents’ religious beliefs. As Joyce has pointed out in The child catchers, a movement for adoption has in recent years been part of American evangelical Christian thinking. In addition, some fundamentalist religious groups have emphasized publications recommending parenting that demanded children’s obedience and enforced it with physical punishment. This tendency began with the Baby Wise books in the 1990s (publications later strongly criticized because the rigid regulation of early feeding had harmed some infants), and proceeded to approval of the obedience-producing manual To train up a child (see http://childmyths.blogspot.com/2010/07/child-death-by-thousand-cuts-in.html for another death associated with this book). The enforcement of child obedience as the principle task of parenting dates back to Puritan times in the United States, and belief in this value has always considered intense punishment as regrettable but essential to save the child from danger of hellfire. In most cases, however, the children do not die or even have severe enough injuries that the parents would seek medical attention for them, so we are not likely to hear of them-- and as many of the children in question are homeschooled, there are no teachers, and perhaps no near neighbors, to notice chronic mistreatment.
Joyce also describes the connection between fundamentalist Christian beliefs and multiple adoptions resulting in “mega-families” with 20 or more children. The belief that the “Great Commission” of spreading the Gospel requires adoption of children who would otherwise not be Christians is clearly related to this phenomenon-- if a person believes it is a religious duty to take as many children as possible, clearly only practical barriers will limit family size. As Joyce points out in The child catchers, any care deficits that may occur as a result of having too many children are considered to be outweighed by the spiritual victories accomplished. But any parent or child care provider can testify that having too many children to care for makes it impossible to do a good job, or even to notice the needs of every child. For this reason, state laws and guidelines set limits on the staff:child ratio of day care centers in order to facilitate good individual development. For whatever reason-- perhaps shared faith or personal relationships—not all adoption organizations take these issues into consideration, but instead cooperate with the creation of adoptive families too large to care for effectively. (Yes, the children may help care for each other, but they do not do the job that a committed adult can do with a small number of children.)
I wonder, though, whether in addition to religious beliefs, we may be seeing these “mega-families” formed as the result of a form of emotional disturbance in the adoptive parents. It’s certainly clear that excessive motivation toward some normal activities should be regarded as pathological. Excessive eating and drinking, and “sex addiction”, interfere with normal life and are reasons for psychological treatment. Hypersexuality may even be a symptom of brain damage. Could there, then, be a pathological level of the wish to have children that most (but certainly not all) people experience? Is there some yet undescribed problem we might call “hyperparentalism”, which leads to an inescapable, anxious yearning for more and more children, but does not cause good care for the children when they arrive? If so, can we detect this before adoption-- and can we get adoption caseworkers to regard such urges as pathological rather than admirable?
I throw this idea out as a possible explanation of part of the megafamily phenomenon. I know, of course, that there are plenty of other reasons for this kind of behavior. These may include financial benefits for foster care or adoption. There may be advantages of social respect and honor for women whose religious and cultural milieu does not permit her to be employed or to study toward professional qualifications. There may also be advantages for husbands who would prefer for their wives to stay at home and be as dependent as possible.
When these benefits are mingled with religious beliefs, they seem to offer some explanation of multiple adoptions, and even of cruel treatment. Nevertheless, I have to wonder whether the explanation is complete without some consideration of the more personal motives of adoptive parents who seek more children than they can care for, and maltreat the ones they have.
Saturday, November 9, 2013
Dear Dr. Grandin:
I am writing to ask you to retract or correct a statement you made more than twenty years ago, a statement that I believe has had the unfortunate effect of helping to continue the use of holding therapy as a treatment for autistic children.
In 1992, you published in the Journal of Child and Adolescent Psychopharmacology (2), an article entitled “Calming effects of deep touch pressure in patients with autistic disorder, college students, and animals” (on line at www.grandin.com/inc/squeeze.html). In this article, you described your own gratification with the use of your “squeeze machine”. You also spoke approvingly of the holding therapy for autistic children recommended by Martha Welch in her book Holding Time, and because you were and are a respected figure in the community of people concerned with autism, this approval no doubt carried a good deal of weight. You did not mention a point that many have made since then: that there is a world of difference between choosing to be “squeezed” in a machine that you can control, and being physically restrained and shouted at without being able to control the beginning or end of the experience. Holding therapy, as performed by Martha Welch, Jirina Prekopova, and others, presents the latter situation.
Many changes and revelations have occurred since 1992. The use of holding therapy has never been shown to be an effective treatment for autism, despite some of the efforts of Prekopova and her German colleagues in the 1980s. Practitioners of holding therapy, including Welch, have gradually come to say that they are treating Reactive Attachment Disorder or oppositional disorders rather than autism. Deaths and injuries from holding therapy have been publicized.
A small number of adults have come forward to tell of their distress during their treatment for autism using holding therapy. One of these, a British man whom I will call Walter, has e-mailed me describing his disturbing memories of the treatment for autism he received in the 1980s, memories on account of which he is being evaluated for Post-Traumatic Stress Disorder. In talking about his treatment by a therapist in the north of England, he said: “The first holding session was in her room when we went to [town] to see her. It was lying side by side, me in the middle facing my mum. Then at home my mam was on top of me holding my arms, in the hands-up position while I lay on my back, but she never had her weight on top of me. I know its not as bad as what I saw in the videos of Jirina with a mother lying on top of her boy and even shaking his head, but it was bad enough for me with being uncomfortable with forced touch, and having no freedom to scratch an itch or wipe my eyes during crying. As a child with unknown autism and aspergers syndrome, I had insufficient vocabulary to explain my way out of this and felt trapped as to why I reacted the way I did, so it felt horrible for a therapist to watch telling me I’m angry all the time, it felt like she was playing with my emotions as well. “ In another e-mail, Walter said, “Communication is harder for autistic children and also with aspergers, and when in a [holding therapy] position, it must be a bit like someone has had a stroke and knowing what they want to say but just can’t get it out, that was how I felt. It was that feeling of how do I tell my mum not to, or that she can’t hug or touch me because it hurts without taking it the wrong way or thinking I’m being silly…” Walter’s father put a stop to his holding therapy treatment after four sessions, and Walter comments, “I recently sat and explained to my parents that this therapy was like me being abused while this lady sat and watched me in a emotional state, and they are now so sorry that this had happened and now see how traumatic it really was, and unlike what it said in the book about the parents not being tempted to feel sorry or guilty of it, well my parents did because they loved me so much regardless of the way I was. I broke down and cried when I told them this, and my mam came over to me sitting in the chair and, pleaded with her not to touch me, and she didn’t as she now understands I am touch sensitive, which is quite common among autistics.”
Walter’s treatment occurred many years ago, and it would be easy to assume that no such practice exists today. Perhaps you, Dr. Grandin, have assumed that the use of this method of treating autistic people had gradually vanished. However, it is very clear that in the Czech Republic Jirina Prekopova and her followers continue to do holding therapy and have much popular support (as well as considerable professional antagonism). In 2006, Henry Massie, writing in the newsletter of the Northern California Regional Organization of Child and Adolescent Psychiatry, described holding therapy as “a new, effective psychosocial treatment for autism”. He referred to the use of the method at the Mifne Center in Israel. In 2006, Stella Acquarone recommended the method in her book Signs of autism in infants (published by Karnac). Acquarine appears to be describing holding for regulatory purposes at www.youtube.com/watch?v=Q1MwRuHhdIE.
And, of course, your 1992 statement remains on the Internet and provides support for this non-evidence-based, implausible, potentially harmful treatment. I hope that Walter’s description of his experience and its aftermath will persuade you finally to speak out against holding therapy, and to put your great influence to work against this and other wrongly-conceived treatments for autism.
Jean Mercer, Ph.D.
Thursday, November 7, 2013
I notice on my blog information this morning an unusually large number of reads of an old post, http://childmyths.blogspot.com/2011/07/eye-contact-with-babies-what-when-why.html. I would guess that this interest is because of various announcements of a research article in Nature by Warren Jones and Ami Klin, “Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism” (on line, 6 November 2013). A piece on the front page of the New York Times discussed the Nature paper (http://well.blog.nytimes.com/2013/11/06/a-babys-gaze-may-signal-autism-study-finds/).
I hope everyone will understand that this research does not make it possible for parents to assess their young baby’s typical or atypical development by seeing whether they “make eye contact”, that is, engage in mutual gazing for short periods with another person, or visually track another person’s eyes. This study, valuable as it is, does not give guidelines for evaluating a baby’s gaze in an everyday social setting. All babies, like all older persons, look at eyes sometimes, at mouths sometimes, at other parts of the face sometimes—and away from a person at other times. Whether they do “mutual gazing” with another person depends to some extent on what the other person looks like or does, whether the distance and illumination are favorable, whether the baby is tired, etc. An important point made by Jones and Warren is that differences in eye-tracking are not present at birth, when babies do not reliably look at eyes, but are seen after two months, when typical development involves an increase in attention to eyes so that by 6 months typically-developing babies look at eyes as much as adults do.
In any case, the babies in the Jones and Klin study did not “make eye contact”; there was none to be made, because the babies were watching a video of another person, not engaging face-to-face with a real person who could look back at them. The question was whether recordings of their eye movements showed that the babies looked at the videorecorded eyes or at other parts of the face or the screen, and how long their gaze lingered on a particular area. Typically-developing babies begin to look at the eyes more and more as they mature from about 2 months to about 6 months, but it appears that for babies who will later be diagnosed as autistic, this developmental process is “derailed” during that period.
The Times report quoted Warren Jones as saying that eye-tracking (following another’s eyes with one’s gaze) is only one channel that may be related to autism. He proposed that social communication through touch or listening is probably similarly related to autism, but these processes are more difficult to measure than eye movements. (This suggests, by the way, that a treatment that increased eye contact might not necessarily affect autistic development, because the atypical gaze may be only one symptom of a central problem.)
Naturally, the concern with early diagnosis of autism is associated with the hope that early intervention would get the “derailed” social development back on track. The New York Times report included the suggestion that intensified or pleasurable social experiences might be helpful if they were provided during the possible sensitive period or window of opportunity that may be indicated by the Jones and Klin study. Does this suggestion imply that parents of autistic children have done something wrong, or failed to do something right? Does the strong genetic factor at work in autism determine that these infants need unusual care given by their parents, different care than is needed by more typically-developing babies? How do the interactions between genes and environment guide development?
There are several ways in which genes and environment can interact. One of these, a passive interaction, means that the environment directly affects development in different ways depending on a person’s genetic make-up. For example, if a genetic problem made a baby not very sensitive to social signals like gaze, and if those signals needed to be experienced for good development, more intense or noticeable signals might help development. This is an idea that has been around for some time. Nikolaas Tinbergen, the Nobel Laureate in Medicine, suggested that people working with autistic children should wear masks with big eyes to get the children’s attention. Some alternative treatments for autism have parents wear large eyeglasses and hold objects beside their eyes when they offer the objects to autistic children. There is no evidence that this is effective, though, so if there is a gene-environment interaction in autism it may not be this kind, and treatments that use these methods will probably not be helpful no matter how early they are provided.
Gene-environment interactions may also be evocative. This means that the genetic material causes the individual to act in ways that make some experiences more likely to happen. This might mean that when typically-developing babies pay attention to eyes, they attract adults to socialize with them, and that socialization facilitates good development. If babies who will later be diagnosed as autistic do not pay attention in that way, or do other things that attract adult play and interaction, they might not receive social interactions that are needed to facilitate development. In that case, treatment might involve helping parents become more responsive to any cues the babies give, or more able to find ways of interacting even though the baby doesn’t “give the signal”. This might or might not need to happen during a particular early period, although the Jones and Klin study seems to suggest that there are important changes early on.
Gene-environment interactions can also be active. This means that the genetic material causes the baby to do things that naturally provide certain experiences-- like moving in ways that strengthen muscles and increase flexibility, or preferring some foods over others. Children who find dancing or singing or talking easy and fun will do those things over and over and get even better at them as they actively seek these experiences. Toddlers with Williams syndrome are said to seem to have a “hunger” for eye contact, and although they are initially slow to talk they later become extremely sociable and communicative. If this were the case in autism, it may be that typically-developing children are genetically determined to do things like looking and imitating that encourage good development, and autistic children lack that determinant. In that case, it would be a matter of a great deal of work to determine what it was that babies typically did that gave them the “right experiences”, and to figure out how such experiences could be given to autistic children. Even then, it would have to be shown empirically that the treatment was effective.
Finally, it’s possible that there is little or no gene-environment interaction. The Jones and Klin finding may simply show a developmental trajectory that is different for typical and autistic children because of their genetic differences. The increasing differences between 2 and 6 months might, unfortunately, not indicate a sensitive period, but just result from innate developmental patterns. In that case, early diagnosis might or might not help interventions work.
There is a lot of other interesting work that Jones, Klin, and others have published, and I hope to be able to comment on it soon.