Journal of Autism and Childhood Schizophrenia,
Vol. 6, No. 1, 1976
Questions, Answers, and Comments
S P R I N G I N G T H E T R A D I T I O N T R A P continued t
Following are comments by five associate editors of JACS on Mary Akerley's "'Parents Speak" article about difficulties in relationships between parents of autistic children and professionals. The article appeared in volume 5, number 4, in December 1975.--(Ed.) The child psychiatrists and other child care specialists who work with the severely disturbed child face a very difficult clinical task. Because these children are very difficult to deal with and our success rate is small, we tend to blame others for the severity o f the problem and our failures. Unlike the obviously retarded child, it is difficult to see any clear-cut neurophysiologic or biochemical cause for the behavior which evidence indicates may be a factor in some instances of childhood psychoses and especially in some instances of autism. Additionally, there is good evidence that certain early life experiences do adversely affect child development and result in behavior called psychotic. However, such evidence also indicates that the adult caretakers are themselves victims o f a variety of adverse life events and prior experiences which makes their nurturance of an infant difficult. This is especially so with severe maternal depression. As our experiences and knowledge base has increased, more of us turn to parents as collaborators in the treatment o f their child. We have repeatedly experienced the effectiveness of parents who have learned how to more effectively work with their child by watching others work with the youngster and then trying to use these observations to interact differently with their child, first in the laboratory o f the clinic and then at home. It is also clear that when a child has become disturbed early in life a circular process develops between the child and parents, each having learned how to get at the other. The interruption o f that process and relief o f the parents from the strains o f constant care of the child are important. We have learned that home visits of 5 to 6 hours, especially around bedtimes often clarify some o f the circular binds between child and parent and offer 'Requests for reprints of "Springing the Tradition Trap" should be sent to the National Society for Autistic Children--U.S.A., 169 Tampa Avenue, Albany, New York 12208. 93 9 1976 Plenum Publishing C o r p o r a t i o n , 227 West 17th Street, New Y o r k , N . Y . 10011. No part o f this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission of the publisher.
94
Questions, Answers, and Comments
opportunities for helping parents to learn some more effective behavior with their youngster. Since we have never encountered a parent who is not concerned with the problems of helping his child, we cannot agree with "the parents are at fault" accusation, which we sometimes hear. On the other hand, all parents and their disturbed children are involved together in an interactional system. For this reason, parent participation in helping to alter the child's behavior is important to improvement. Additionally, those of us who have worked closely with parents recognize that some parents, like the very depressed parent who has been depressed usually prior to and subsequent to the child's birth, often needs help for the depression which has been aggravated by the child's illness. As many factors as possible need to be altered to benefit each child--the child's behavior and learning, the environment, and other factors. Mothers bear the brunt of the child-caring operations with such children and need the greatest relief from strain, but fathers need to be equally involved in the collaborative work of helping the child learn to behave differently. While new drugs and operant conditioning methods have proved helpful, the whole child and the whole environment need more comprehensive attention to maximally help the child.
Irving N. Berlin University of California School of Medicine Sacramento, California I find myself in substantial agreement with the points made by Ms. Akerley. Since a number of children with autism or strong autistic features come to me for evaluation, after having been seen by others, I have duplicated in my clinical experience her examples of subjective and insufficiently substantiated interpretations of symbolic meanings of the children's behavior--interpretations which have been of little help as a guide to management. The professional who diagnoses such youngsters does have many responsibilities. First is to diagnose accurately--label, if you will--and communicate clearly this diagnostic opinion. The developmental picture over time is exceedingly important as it may indicate the presence or absence of potential for positive change in the child. If such a determination requires several observations spread out over time, the reason for this necessity should be given. In my experience families are quite cooperative in keeping requested behavioral notations to supplement the sequential observations. As soon as diagnosis is clear, it should be transmitted--if it is then rejected by the family that is their right. It is important that unawareness of the nature of the youngster's deviance is at least not due to failure of psychiatric responsibility to tell them.
Questions, Answers, and Comments
95
The need to take the total family into account in making recommendations should be an essential element and ought to be a familiar concept to professionals dealing with children. In outlining plans, one can give the optimum program as it now exists in accordance with today's k n o w l e d g e . However, one should include the guardedness of prognosis and describe the factors which we currently believe to be indices of predictability. In a chronic disturbance such as autism, an exclusive focus on the deviant child which creates excessive stress for other children in the family and for the parents is not justified. Parents must be free to make informed decisions with a minimum of guilt. The problem o f selectively providing or forgetting the diagnostic " l a b e l " is a sticky one. Ms. Akerley suggests forgetting labels when the child goes to school lest he be misplaced in an "emotionally handicapped class" and suggests instead classes for learning disability or the retarded. In some cases such placement may be useful but not always. In general if a school or class would refuse to accept a child knowing his behavioral pattern, they will extrude him sooner or later if he has been slipped in under " another name. In the end, the child has not found the proper educational niche. However the problem may be that, with a deviance which affects such a small proportion o f children, and with the wide range of severities, it realistically becomes exceedingly difficult to locate a proper educational placement. This is indeed one of the central problems that parent organizations must deal with constantly. There are a number of positive suggestions included in Ms. Akerley's discussion and her outspoken commentary is very useful to professionals. With regard to the degree of involvement of professionals in public and community activity, some of us are better at it than others. As a general principle, however, a psychiatrist ought to be concerned with the delivery o f care and I can see no principled professional objection to involvement in community activity and education regarding children's needs o f any kind. Stella Chess New York University Medical Center New York, New York
If I have any reservations about Ms. Akerley's critique, it is that she does not carry the implications o f her comments far enough. She asks that the family o f the autistic child be spared the most unkindest cut of all: that of being blamed for the child's abnormality. The family of the emotionally disturbed child is no less in need of considerate and sensitive treatment. To suggest that the task is " t o decide whether the child is cause or effect, the problem or the s y m p t o m " is to continue the search for blame. Ascribing
96
Questions, Answers, and Comments
blame is antitherapeutic as well as cruel. Guilt is the problem, not the solution. Once there is disturbed behavior, both action and reaction are involved. Just as the parents of an autistic child have their behavior shaped by their child's abnormalities, the parents of the emotionally disturbed child become different from what they were in response to the Child's deviant behavior. The challenge is to help the parents of troubled children to recognize that average or ordinary parenting behaviors simply do not suffice for a disturbed child, whatever the initiating cause of the disturbance. The task of the professional is to help the parents to become cotherapists in the process of rehabilitation. The focus should be on what is to be done, not on what was wrongly done. Naming c a n be therapeutic but we dare not overlook its potential for toxicity. At issue is not only the accuracy of the clinician's judgment but the meanings and often idiosyncratic implications of the diagnosis to parents. "Brain damage" brings enormous relief to some parents by exorcising psychodynamic ghosts; it agitates others who hear in it divine retribution for their sinful behavior or who translate it to mean "hopeless." We can agree that accuracy and honesty are essential; but they must be accompanied by thoughtful explanation, encouragement to reflect and the opportunity for repeated discussions of parental feelings about the diagnostic label. Agreed, physicians have no God-given rights to make decisions; but it isn't enough to outline options without offering opinions (Eisenberg, 1975). For many parents, the fear of doing the wrong thing makes deciding so agonizing that they need someone to share the responsibility with them (and to share the blame if the outcome is unhappy). Parents do have rights, and so do brothers and sisters. Allocation of family resources must take into account the needs of all. Few resources are more finite than time. Helping parents to grant themselves the right to time by themselves, to recreation, and to vacations can be a major contribution to the care of the patient. Martyrdom is rarely therapeutic. When Ms. Akerley criticizes us for overinterpreting behavior, she strikes at one of the most grievous errors of zealous mental health workers (and of all too many parents, as well). It is instructive to recall that Anna Freud lodged the same complaint in her 1926 lectures to the Vienna Psychoanalytic Institute. In criticizing Melanie Klein's employment of the play method as though it were equivalent to the free association of the adult, she commented wryly that "the child who runs toward a lady visitor and opens her handbag is not necessarily, as Mrs. Klein maintains, thereby symbolically expressing its curiosity as to whether its mother's womb conceals another little brother or sister, but may be connecting some experience of
Questions, Answers, and Comments
97
the previous day when someone brought it a little present in a similar receptacle" (Freud, 1946). There is no better axiom to guide us than O c c a m ' s razor: Do not multiply entities unnecessarily. The simplest explanation is likely to be the best. I echo the call for the therapist to become a social advocate for the child in need o f care. Those of us who see the parents of troubled children know much more immediately than others in the c o m m u n i t y how terrible is the toll exacted by illness. It is precisely what we know that demands of us to be in the vanguard of the effort to create the social conditions necessary to mitigate suffering and to p r o m o t e development. Leon Eisenberg Children "s Hospital Medical Center Boston, Massachusetts
REFERENCES
Eisenberg, L. The ethics of intervention: acting amidst ambiguity. Journal of Child Psychology and Psychiatry, 1975, 16, 93-104. Freud, A. The psychoanalytical treatment of children (Nancy Proctor-Gregg, trans.). London: Imago Publishing Company, 1946, pp. 29-30.
I read Mary Akerley's " P a r e n t s S p e a k " column with great interest. I would presume Ms. Akerley is talking out o f her own experiences as a parent of an autistic child. However, we need to remind ourselves that the autistic child is not the only or even the dominant member in that group of children we classify as childhood psychotic. These children and their families are also as diversified in their strengths and weaknesses as normal children and their problems encompass all kinds and degrees o f difficulty in competence and emotional relationships. Some of the children have more adaptive competence and potentialities than others. In the same way, some o f the families cope with their ordeal better than others and certainly all utilize their own unique way of coping with the distress of a developmentally disordered child. The essential point is that the children and their families must be given all kinds o f help, both educational and therapeutic, and specifically geared to their needs. The range o f problems warranting attention is very wide and clinical attention must be given to issues of competence, motivation, and relationship. Deficient central processing of language is a key problem for some of the children. However, it is not an equal problem for all o f the children; nor
98
Questions, Answers, and Comments
is the language problem always the same. It is certainly not unusual to discover all degrees and kinds of motivational influence affecting a social function like language. Similar diversity applies to a host of other behavioral impairments. The families also vary broadly in their interactions with the children and the influence they bring to bear. The right to be different! Most Of us in responsible therapeutic programs would agree with the parents' rightful requirements that the doctor show warmth, respect, understanding, and fundamental clinical comprehension. Ms. Akerley's "traditional" psychiatrist can probably he better described as incompetent and he would not survive in most of our therapeutic programs. Certainly most psychiatrists working genuinely with the problem of childhood psychosis do not claim to know the cause of early childhood psychosis. They do not presume, therefore, to blame the parents for the children's difficulties, and they seem to be searching desperately, along with the parents, for ways to diminish the agony of the families. They do not make naive, incomprehensible interpretations. They are certainly alert to neurological factors. They believe in the role of remediation of specific disabilities. So why the big fuss? Finally, regardless of the cause or causes of early childhood psychosis, there is always a fundamental validity in working with the private understanding of the children and their families. Help for the children and their families, therefore, should encompass the principles of psychotherapy as well as education. Further, any effective psychiatric program is going to identify with the parents and siblings as well as the disturbed children; and its therapeutic aim will be to diminish the understandable confusion, doubt, and self-questioning of the families rather than to increase it. William Goldfarb Henry Ittleson Center for Child Research Riverdale, New York
Many generalizations have been made about the parents of autistic children, the vast majority unsubstantiated by any hard evidence. I should like to add one more untested generalization to the list--that parents of these children often have the knack of seeing to the heart of a matter and speaking the truth unadorned by social niceties. Maybe this is a mild version of the children's devastating social naivet6--but it is a most necessary and valuable attribute. Mary Akerley shows this quality in her contribution to the "Parents Speak" column. Her criticisms of the professionals are in many cases justified and her suggestions for improving the patient-doctor relationship are practical and sensible.
Questions, Answers, and Comments
99
There are nevertheless some points upon which I should like to take issue with her. First, a few of the problems she raises are specific to the United States. For example, in the United Kingdom, parents can far more easily find advisers who are not psychoanalytically oriented and who do not, therefore, always try to trace behavior problems in the child to parental mishandling. I was surprised at the estimate she quotes that 55~ of families with a handicapped child break up entirely. That has certainly not been my experience in my work with mentally handicapped children in London. Second, while agreeing with Mary Akerley on the importance o f honesty in the professional worker's dealings with parents, I maintain that the situation is not always as simple and straightforward as she suggests. In the field of mental handicap there is often considerable doubt about the diagnosis and the prognosis if the child is very young When first seen. It may be some years before it is possible to classify the problem and give detailed information about the likely outcome. Here, the professional h a s to be honest about the limitations of the assessment process, and explain the difficulties to the parents. Another problem, not mentioned by Mary Akerley, is that parents o f handicapped children vary widely in their personalities, their life experiences, and their reactions to having a handicapped child. While many can be told the truth so f a r as it is k n o w n , in detail, in plain terms, and early on in their child's life, as long as this is done with sensitivity and understanding, there is a substantial minority for whom this approach has to be modified. A very few would totally reject any suggestion of an unfavorable prognosis and the doctor who gave it to them. Others have to be given quite a long time to take in the fact that they have a handicapped child. It may be many years before they are ready to discuss the full extent of the child's impairments and accept the information they are given. It should be part of the worker's skill to be able to understand the needs of the parents as well as the child and to adjust his approach accordingly. I do not mean by this that the professional should talk down to the parents, but that he should respond as a fellow human being to what the parents want and can take at any particular time. There is no doubt that the eventual aim is to tell as much of the truth as can be known but there are many different ways o f reaching this goal. Finally, I was surprised to read the statement that " t h e professional must be willing to step outside the traditional mode at least long enough . . . . to decide whether the child is cause or effect, the problem or the sympt o m . " Surely making this type of decision objectively, in the light of all the available evidence, is an essential part o f the professional mode; that is, if one defines a "professional" as someone who is striving to maintain a high standard in his own area of expertise.
100
Questions, Answers, and Comments
Mary Akerley's ideas are not, in fact, contrary to those of all professionals. Similar points have already been made by many doctors and others who are aware of the deficiencies in their fields. Her suggestions for improving the situation have long been accepted and put into practice by some workers. There is no fundamental disagreement between parents and the best professional workers. The real problem is how to ensure that everyone has the same high standards. To sum up, I should like to underline my agreement with the general principles laid down by the writer, including the point that labeling a problem, as long as this is accompanied by adequate explanation, is most necessary and helpful. The fact that being categorized as handicapped has some disadvantages is far outweighed by the gains, to professionals and parents alike, achieved by seeing the problem in its proper context and learning from the experiences of others who have suffered from similar conditions. If, as I believe, Mary Akerley's views are, in essence, correct, then it follows that many, though by no means all, professional workers will need to undergo major changes in their attitudes if services for handicapped children and their parents are to be improved. Lorna Wing MRC Social Psychiatry Unit London, England
Vol. 6, No. 1, 1976
Questions, Answers, and Comments
S P R I N G I N G T H E T R A D I T I O N T R A P continued t
Following are comments by five associate editors of JACS on Mary Akerley's "'Parents Speak" article about difficulties in relationships between parents of autistic children and professionals. The article appeared in volume 5, number 4, in December 1975.--(Ed.) The child psychiatrists and other child care specialists who work with the severely disturbed child face a very difficult clinical task. Because these children are very difficult to deal with and our success rate is small, we tend to blame others for the severity o f the problem and our failures. Unlike the obviously retarded child, it is difficult to see any clear-cut neurophysiologic or biochemical cause for the behavior which evidence indicates may be a factor in some instances of childhood psychoses and especially in some instances of autism. Additionally, there is good evidence that certain early life experiences do adversely affect child development and result in behavior called psychotic. However, such evidence also indicates that the adult caretakers are themselves victims o f a variety of adverse life events and prior experiences which makes their nurturance of an infant difficult. This is especially so with severe maternal depression. As our experiences and knowledge base has increased, more of us turn to parents as collaborators in the treatment o f their child. We have repeatedly experienced the effectiveness of parents who have learned how to more effectively work with their child by watching others work with the youngster and then trying to use these observations to interact differently with their child, first in the laboratory o f the clinic and then at home. It is also clear that when a child has become disturbed early in life a circular process develops between the child and parents, each having learned how to get at the other. The interruption o f that process and relief o f the parents from the strains o f constant care of the child are important. We have learned that home visits of 5 to 6 hours, especially around bedtimes often clarify some o f the circular binds between child and parent and offer 'Requests for reprints of "Springing the Tradition Trap" should be sent to the National Society for Autistic Children--U.S.A., 169 Tampa Avenue, Albany, New York 12208. 93 9 1976 Plenum Publishing C o r p o r a t i o n , 227 West 17th Street, New Y o r k , N . Y . 10011. No part o f this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission of the publisher.
94
Questions, Answers, and Comments
opportunities for helping parents to learn some more effective behavior with their youngster. Since we have never encountered a parent who is not concerned with the problems of helping his child, we cannot agree with "the parents are at fault" accusation, which we sometimes hear. On the other hand, all parents and their disturbed children are involved together in an interactional system. For this reason, parent participation in helping to alter the child's behavior is important to improvement. Additionally, those of us who have worked closely with parents recognize that some parents, like the very depressed parent who has been depressed usually prior to and subsequent to the child's birth, often needs help for the depression which has been aggravated by the child's illness. As many factors as possible need to be altered to benefit each child--the child's behavior and learning, the environment, and other factors. Mothers bear the brunt of the child-caring operations with such children and need the greatest relief from strain, but fathers need to be equally involved in the collaborative work of helping the child learn to behave differently. While new drugs and operant conditioning methods have proved helpful, the whole child and the whole environment need more comprehensive attention to maximally help the child.
Irving N. Berlin University of California School of Medicine Sacramento, California I find myself in substantial agreement with the points made by Ms. Akerley. Since a number of children with autism or strong autistic features come to me for evaluation, after having been seen by others, I have duplicated in my clinical experience her examples of subjective and insufficiently substantiated interpretations of symbolic meanings of the children's behavior--interpretations which have been of little help as a guide to management. The professional who diagnoses such youngsters does have many responsibilities. First is to diagnose accurately--label, if you will--and communicate clearly this diagnostic opinion. The developmental picture over time is exceedingly important as it may indicate the presence or absence of potential for positive change in the child. If such a determination requires several observations spread out over time, the reason for this necessity should be given. In my experience families are quite cooperative in keeping requested behavioral notations to supplement the sequential observations. As soon as diagnosis is clear, it should be transmitted--if it is then rejected by the family that is their right. It is important that unawareness of the nature of the youngster's deviance is at least not due to failure of psychiatric responsibility to tell them.
Questions, Answers, and Comments
95
The need to take the total family into account in making recommendations should be an essential element and ought to be a familiar concept to professionals dealing with children. In outlining plans, one can give the optimum program as it now exists in accordance with today's k n o w l e d g e . However, one should include the guardedness of prognosis and describe the factors which we currently believe to be indices of predictability. In a chronic disturbance such as autism, an exclusive focus on the deviant child which creates excessive stress for other children in the family and for the parents is not justified. Parents must be free to make informed decisions with a minimum of guilt. The problem o f selectively providing or forgetting the diagnostic " l a b e l " is a sticky one. Ms. Akerley suggests forgetting labels when the child goes to school lest he be misplaced in an "emotionally handicapped class" and suggests instead classes for learning disability or the retarded. In some cases such placement may be useful but not always. In general if a school or class would refuse to accept a child knowing his behavioral pattern, they will extrude him sooner or later if he has been slipped in under " another name. In the end, the child has not found the proper educational niche. However the problem may be that, with a deviance which affects such a small proportion o f children, and with the wide range of severities, it realistically becomes exceedingly difficult to locate a proper educational placement. This is indeed one of the central problems that parent organizations must deal with constantly. There are a number of positive suggestions included in Ms. Akerley's discussion and her outspoken commentary is very useful to professionals. With regard to the degree of involvement of professionals in public and community activity, some of us are better at it than others. As a general principle, however, a psychiatrist ought to be concerned with the delivery o f care and I can see no principled professional objection to involvement in community activity and education regarding children's needs o f any kind. Stella Chess New York University Medical Center New York, New York
If I have any reservations about Ms. Akerley's critique, it is that she does not carry the implications o f her comments far enough. She asks that the family o f the autistic child be spared the most unkindest cut of all: that of being blamed for the child's abnormality. The family of the emotionally disturbed child is no less in need of considerate and sensitive treatment. To suggest that the task is " t o decide whether the child is cause or effect, the problem or the s y m p t o m " is to continue the search for blame. Ascribing
96
Questions, Answers, and Comments
blame is antitherapeutic as well as cruel. Guilt is the problem, not the solution. Once there is disturbed behavior, both action and reaction are involved. Just as the parents of an autistic child have their behavior shaped by their child's abnormalities, the parents of the emotionally disturbed child become different from what they were in response to the Child's deviant behavior. The challenge is to help the parents of troubled children to recognize that average or ordinary parenting behaviors simply do not suffice for a disturbed child, whatever the initiating cause of the disturbance. The task of the professional is to help the parents to become cotherapists in the process of rehabilitation. The focus should be on what is to be done, not on what was wrongly done. Naming c a n be therapeutic but we dare not overlook its potential for toxicity. At issue is not only the accuracy of the clinician's judgment but the meanings and often idiosyncratic implications of the diagnosis to parents. "Brain damage" brings enormous relief to some parents by exorcising psychodynamic ghosts; it agitates others who hear in it divine retribution for their sinful behavior or who translate it to mean "hopeless." We can agree that accuracy and honesty are essential; but they must be accompanied by thoughtful explanation, encouragement to reflect and the opportunity for repeated discussions of parental feelings about the diagnostic label. Agreed, physicians have no God-given rights to make decisions; but it isn't enough to outline options without offering opinions (Eisenberg, 1975). For many parents, the fear of doing the wrong thing makes deciding so agonizing that they need someone to share the responsibility with them (and to share the blame if the outcome is unhappy). Parents do have rights, and so do brothers and sisters. Allocation of family resources must take into account the needs of all. Few resources are more finite than time. Helping parents to grant themselves the right to time by themselves, to recreation, and to vacations can be a major contribution to the care of the patient. Martyrdom is rarely therapeutic. When Ms. Akerley criticizes us for overinterpreting behavior, she strikes at one of the most grievous errors of zealous mental health workers (and of all too many parents, as well). It is instructive to recall that Anna Freud lodged the same complaint in her 1926 lectures to the Vienna Psychoanalytic Institute. In criticizing Melanie Klein's employment of the play method as though it were equivalent to the free association of the adult, she commented wryly that "the child who runs toward a lady visitor and opens her handbag is not necessarily, as Mrs. Klein maintains, thereby symbolically expressing its curiosity as to whether its mother's womb conceals another little brother or sister, but may be connecting some experience of
Questions, Answers, and Comments
97
the previous day when someone brought it a little present in a similar receptacle" (Freud, 1946). There is no better axiom to guide us than O c c a m ' s razor: Do not multiply entities unnecessarily. The simplest explanation is likely to be the best. I echo the call for the therapist to become a social advocate for the child in need o f care. Those of us who see the parents of troubled children know much more immediately than others in the c o m m u n i t y how terrible is the toll exacted by illness. It is precisely what we know that demands of us to be in the vanguard of the effort to create the social conditions necessary to mitigate suffering and to p r o m o t e development. Leon Eisenberg Children "s Hospital Medical Center Boston, Massachusetts
REFERENCES
Eisenberg, L. The ethics of intervention: acting amidst ambiguity. Journal of Child Psychology and Psychiatry, 1975, 16, 93-104. Freud, A. The psychoanalytical treatment of children (Nancy Proctor-Gregg, trans.). London: Imago Publishing Company, 1946, pp. 29-30.
I read Mary Akerley's " P a r e n t s S p e a k " column with great interest. I would presume Ms. Akerley is talking out o f her own experiences as a parent of an autistic child. However, we need to remind ourselves that the autistic child is not the only or even the dominant member in that group of children we classify as childhood psychotic. These children and their families are also as diversified in their strengths and weaknesses as normal children and their problems encompass all kinds and degrees o f difficulty in competence and emotional relationships. Some of the children have more adaptive competence and potentialities than others. In the same way, some o f the families cope with their ordeal better than others and certainly all utilize their own unique way of coping with the distress of a developmentally disordered child. The essential point is that the children and their families must be given all kinds o f help, both educational and therapeutic, and specifically geared to their needs. The range o f problems warranting attention is very wide and clinical attention must be given to issues of competence, motivation, and relationship. Deficient central processing of language is a key problem for some of the children. However, it is not an equal problem for all o f the children; nor
98
Questions, Answers, and Comments
is the language problem always the same. It is certainly not unusual to discover all degrees and kinds of motivational influence affecting a social function like language. Similar diversity applies to a host of other behavioral impairments. The families also vary broadly in their interactions with the children and the influence they bring to bear. The right to be different! Most Of us in responsible therapeutic programs would agree with the parents' rightful requirements that the doctor show warmth, respect, understanding, and fundamental clinical comprehension. Ms. Akerley's "traditional" psychiatrist can probably he better described as incompetent and he would not survive in most of our therapeutic programs. Certainly most psychiatrists working genuinely with the problem of childhood psychosis do not claim to know the cause of early childhood psychosis. They do not presume, therefore, to blame the parents for the children's difficulties, and they seem to be searching desperately, along with the parents, for ways to diminish the agony of the families. They do not make naive, incomprehensible interpretations. They are certainly alert to neurological factors. They believe in the role of remediation of specific disabilities. So why the big fuss? Finally, regardless of the cause or causes of early childhood psychosis, there is always a fundamental validity in working with the private understanding of the children and their families. Help for the children and their families, therefore, should encompass the principles of psychotherapy as well as education. Further, any effective psychiatric program is going to identify with the parents and siblings as well as the disturbed children; and its therapeutic aim will be to diminish the understandable confusion, doubt, and self-questioning of the families rather than to increase it. William Goldfarb Henry Ittleson Center for Child Research Riverdale, New York
Many generalizations have been made about the parents of autistic children, the vast majority unsubstantiated by any hard evidence. I should like to add one more untested generalization to the list--that parents of these children often have the knack of seeing to the heart of a matter and speaking the truth unadorned by social niceties. Maybe this is a mild version of the children's devastating social naivet6--but it is a most necessary and valuable attribute. Mary Akerley shows this quality in her contribution to the "Parents Speak" column. Her criticisms of the professionals are in many cases justified and her suggestions for improving the patient-doctor relationship are practical and sensible.
Questions, Answers, and Comments
99
There are nevertheless some points upon which I should like to take issue with her. First, a few of the problems she raises are specific to the United States. For example, in the United Kingdom, parents can far more easily find advisers who are not psychoanalytically oriented and who do not, therefore, always try to trace behavior problems in the child to parental mishandling. I was surprised at the estimate she quotes that 55~ of families with a handicapped child break up entirely. That has certainly not been my experience in my work with mentally handicapped children in London. Second, while agreeing with Mary Akerley on the importance o f honesty in the professional worker's dealings with parents, I maintain that the situation is not always as simple and straightforward as she suggests. In the field of mental handicap there is often considerable doubt about the diagnosis and the prognosis if the child is very young When first seen. It may be some years before it is possible to classify the problem and give detailed information about the likely outcome. Here, the professional h a s to be honest about the limitations of the assessment process, and explain the difficulties to the parents. Another problem, not mentioned by Mary Akerley, is that parents o f handicapped children vary widely in their personalities, their life experiences, and their reactions to having a handicapped child. While many can be told the truth so f a r as it is k n o w n , in detail, in plain terms, and early on in their child's life, as long as this is done with sensitivity and understanding, there is a substantial minority for whom this approach has to be modified. A very few would totally reject any suggestion of an unfavorable prognosis and the doctor who gave it to them. Others have to be given quite a long time to take in the fact that they have a handicapped child. It may be many years before they are ready to discuss the full extent of the child's impairments and accept the information they are given. It should be part of the worker's skill to be able to understand the needs of the parents as well as the child and to adjust his approach accordingly. I do not mean by this that the professional should talk down to the parents, but that he should respond as a fellow human being to what the parents want and can take at any particular time. There is no doubt that the eventual aim is to tell as much of the truth as can be known but there are many different ways o f reaching this goal. Finally, I was surprised to read the statement that " t h e professional must be willing to step outside the traditional mode at least long enough . . . . to decide whether the child is cause or effect, the problem or the sympt o m . " Surely making this type of decision objectively, in the light of all the available evidence, is an essential part o f the professional mode; that is, if one defines a "professional" as someone who is striving to maintain a high standard in his own area of expertise.
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Questions, Answers, and Comments
Mary Akerley's ideas are not, in fact, contrary to those of all professionals. Similar points have already been made by many doctors and others who are aware of the deficiencies in their fields. Her suggestions for improving the situation have long been accepted and put into practice by some workers. There is no fundamental disagreement between parents and the best professional workers. The real problem is how to ensure that everyone has the same high standards. To sum up, I should like to underline my agreement with the general principles laid down by the writer, including the point that labeling a problem, as long as this is accompanied by adequate explanation, is most necessary and helpful. The fact that being categorized as handicapped has some disadvantages is far outweighed by the gains, to professionals and parents alike, achieved by seeing the problem in its proper context and learning from the experiences of others who have suffered from similar conditions. If, as I believe, Mary Akerley's views are, in essence, correct, then it follows that many, though by no means all, professional workers will need to undergo major changes in their attitudes if services for handicapped children and their parents are to be improved. Lorna Wing MRC Social Psychiatry Unit London, England
