A PSYCHOEDUCATIONAL MODEL FOR WORKING WITH FAMILIES OF AUTISTIC CHILDREN

Journal of Marital and Family Therapy 1990, Vol. 16, No. 1, 59-70

A PSYCHOEDUCATIONAL MODEL FOR WORKING WITH FAMILIES OF AUTISTIC CHILDREN*

M. Mary Konstantareas University of Toronto

Canada

Because of the well-documented effectiveness of paradigms which emphasize parental or family pathology in understanding and intervening with dysfunctional children, the temptation exists for applying them to other dysfunctional populations. Autism is a pervasive developmental dysfunction with life-long adverse sequelae for the child and family. This paper reviews evidence on the biological etiology of autism and other pervasive developmental deviations, and stresses the necessity forproviding an early and accurate diagnosis for the family. The adverse implications of downplaying individual pathology and concentrat- ing on parental or family dysfunction are then discussed. The natural evolution and specific components of a psychoeducational model for diagnosing autistic children and working with them and their families are then presented. Finally, some of the advantages of this multimodal, multidiscipline model in long-term work with these pervasively dysfunctional individuals and their families are considered.

A systemic approach to understanding psychopathology has had a distinct appeal to many mental health workers because it allows for a complete and balanced view of an individual's pathological behavior. Although the relative emphasis placed on individual versus family variables differs across systemic paradigms (cf. Schwartz & Johnson, 19851, by and large family therapists subscribe to the notion of the identified patient (IP) (Haley, 1980). They usually see the IP as the most vulnerable family member, whose dysfunctional behavior allows the remaining members of the family to maintain their homeostatic, albeit pathological balance. In the case of schizophrenia, for example, most systemic theorists' three main assumptions are that: (a) schizophrenia is intrafamilial rather than physical; (b) the family, in a transactional way, chooses its ill members; and (c) the illness is an advantage, in that it allows the family to maintain its homeostatic balance (Terkelsen, 1983). In this conceptualization, treatment of the IP is a futile exercise since the entire family constitutes the proper intervention target.

*An earlier version of this paper was presented at the Annual Conference of the American Association for Marriage and Family Therapy, New Orleans, October 27-30, 1988.

The research discussed has been supported in part by the Ontario Mental Health Foundation, Grant No. 899-84186.

A special word of thanks to my close collaborators Dr. Leon Sloman and Miss Soula Homatidis for their constructive comments.

M. Mary Konstantareas, PhD, is Head of Research, Child and Family Studies Centre, Clarke Institute of Psychiatry and Professor, Psychology and Psychiatry, University of Toronto, 250 College Street, Toronto, Ontario, Canada M5T 1R8.

Address all correspondence to Dr. Mary Konstantareas, Clarke Institute of Psychiatry, 250 College Street, Toronto, Ontario M5T 1R8, Canada.

January 1990 JOURNAL OF MARITAL AND FAMILY THERAPY 59

The successful application of the various schools of systemic family therapy has been well documented with a variety of psychiatric conditions (Falloon, Boyd, McGill, Williamson, Razani, MOSS, Gilderman & Simpson, 1985; Gurman, Kniskern & Pinsof 1986; Haley, 1980; Minuchin, 1974). In addition, family therapy research, particularly of the still limited process variety, is already well under way (Gurman, Kniskern & Pinsof, 1986). Thus, there is very little question as to the relevance, viability and fairly broad spectrum of applicability of this central therapeutic paradigm. Yet, the success and acceptance of an approach does not preclude attempts a t clarifying the limits of its spheres of application. Engaging in such an activity is usually reflective of the mature stage of a paradigm. With few exceptions (Selvini-Palazzoli, Boscolo, Cecchin & Prata, 1978; Selvini-Palazzoli, Cirillo, Selvini & Sorrentino, 1989), family therapists have, in fact, avoided using family therapy when a member suffers from a severe disorder originating in birth or soon thereafter, such as mental retardation and autism, or other pervasive developmental deviations (PDD) (American Psychiatric Association, 1980, 1987).

However, in our work with autistic and other PDD children, we have been frequently urged, by colleagues working within the Milan approach, to view the autistic child‘s severe pathology as having been caused by dysfunctional intrafamilial patterns. In addition, one is still aware of clinicians trained within the psychoanalytic tradition who consider autism’s causation to be at least partly psychogenic (DeMyer, Hingtgen & Jackson, 1981). Thus, family work within this tradition is frequently undertaken and the child’s problem is reframed as being partly a parental, mainly maternal, rejection or mismanagement of the child.

One of the aims of this paper is to provide a rationale for avoiding the temptation of using a family systems paradigm or a psychoanalytic conceptualization with these families, no matter how appealing we find it in our work with genuinely dysfunctional families. There may, indeed, be cases where the IP is, in fact, the member of the family who has unwittingly chosen to play out his or her pathology or where parents are, in fact, rejecting or mismanaging the child. This is not to deny that families with autistic children are not as susceptible to dysfunction as other families, and may not benefit from a systemic form of intervention or other input at some point in their evolution as a family. It is, rather, to stress that it is not family dysfunction or parental rejection which can lead to a condition as catastrophic and pervasive as autism. Although family or parental pathology may also be present, such pathology may be secondary or reactive to the stress and special non-normative adaptations members of the child’s family may have to make (cf. Bristol & Schopler, 1983; DeMyer, 1979; Konstantareas & Homatidis, 1988). In such cases, parsimony would require that attempts be first directed at amelio- rating the child’s condition.

A body of rapidly accumulating evidence has, in fact, been progressively more clearly pointing to a biological etiology in autism and other PDDs. To substantiate this point, a brief overview of this evidence will be presented, followed by an outline of a number of adverse implications which may accrue to a family if their autistic child is not promptly diagnosed. In this respect, any model of intervention which de-emphasizes appropriate individual diagnosis and reframes the problem as due to parental or family dysfunction will be unhelpful to the family. We shall, finally, present the elements of a psychoeducational model of dealing with autistic children and their families which also adopts a systemic orientation, but one in which the influence of the child‘s pathology on the rest of the family assumes a central role.

EVIDENCE ON THE BIOLOGICAL CAUSATION OF AUTISM Historically, although Kanner succinctly differentiated autism from schizophrenia

of childhood as early as 1943, the term “autism” continued to be used interchangeably

60 JOURNAL OF MARITAL AND FAMILY THERAPY January 1990

with such other labels as “symbiotic psychosis,” “infantile psychosis” and “schizophrenia of childhood” (Rutter, 1978). More crucially, until relatively recently, the presence of overt neurologic dysfunction such as seizures or EEG abnormalities, for most clinicians, precluded the diagnosis of autism (Eisenberg, 1966). Children with “hard” and “soft’) signs of neurologic damage were considered as either “brain damaged or “mentally retarded.” By contrast, autistic children were thought to be of normal intelligence. Such children, according to the prevailing thinking, apparently chose not to display, or were unable to reveal, their masked abilities because of the poor socioaffective reception they received from their parents, particularly by the mothers (Bettelheim, 1967). Thus, the children were thought to be biologically intact but psychologically impaired. Treatment under this conceptualization consisted of providing the autistics with competent and warm mother substitutes. Current evidence has shown that, given proper assessment devices and sensitive handling by the examining psychologist, autistic children can be tested. However, as many as 80% of them receive scores within the range of retardation (DeMyer et al., 1981). Moreover, when they do have the cognitive capacity, they do perform to the best of their ability. Interestingly, cognitive ability appears to be one of the best prognostic indicators of outcome (DeMyer, Barton, DeMyer, Norton, Allen & Steele, 1973; Konstantareas, 1987).

Autistic children, however, are not merely intellectually impaired the way mentally retarded children are. They also present with three clusters of symptoms over and above their cognitive delays: (a) severe impairment in socioaffective functioning and reciprocal social interaction, expressed in impaired imitation, abnormal social play and poor peer interaction; (b) qualitative impairment in verbal and nonverbal communication, reflected in mutism, impoverished language, poor speech production and stereotypical and bizarre use of language and imaginative activity; and (c) a markedly restricted repertoire of activities and interests manifested in stereotyped body movements, distress upon environmental change and an insistence upon following routines.

That these pervasive dysfunctions are not likely to be due to psychosocial factors has been cogently presented elsewhere (cf. DeMyer et al., 1981; Rutter & Schopler, 1987). Suffice it to say that severe environmental deprivation has been linked to a variety of psychiatric disorders, but not to autism. As well, the parents of autistic children produce other, perfectly competent offspring and, thus far, no evidence has been provided on psychiatric deviance in the parents (DeMyer er al., 1981). More importantly, there is considerable research pointing to biological causation present, usually since birth. In brieE

1. As determined by MZ-DZ twin comparisons, a subgroup of autistic children appear to have inherited their autism (Folstein & Rutter, 1977; Ritvo, Spence, Freeman, Mason-Brothers & Marazita, 1985; Steffenburg, Gillberg, Hellgren, Andersson, Gill- berg, Jakobsson & Bohman, 1989).

2. The developmental histories of autistic children are more likely to contain pre- conception, prenatal and perinatal complications, with particular elevation of maternal viral infection during the first trimester of embryogenesis (Chess, 1977; Deykin & MacMahon, 1980) and mid-trimester bleeding (Torrey, Hersh & McCabe, 1975).

3. Neonatal complications, notably encephalitis and other viral infections, also feature prominently in these children’s early histories. In fact, DeLong, Beau and Brown (1981), reported an acquired reversible autistic syndrome after acute encephalopathy in three otherwise normal children who were 5-, 7.5- and 11-years old at the illness’ onset, an age well beyond the period for diagnosing autism.

4. Autism has been found to coexist with a variety of structural, metabolic, func- tional and other abnormalities of the central nervous system (CNS) such as Down’s syndrome, Phenylketonuria (PKU), Moebius syndrome, Gilles de la Tourette, tuberous


sclerosis, lactic acidosis and neurofibromatosis, among others (See Coleman & Gillberg, 1985, for review).

Finally, with rapid advances in imaging technologies in recent years, some tantaliz- ing new findings have emerged, such as, the significant underdevelopment of the cerebel- lum in nonretarded autistic individuals through the use of magnetic resonance imaging (Bauman & Kemper, 1985). In sum, autism is currently viewed as the final behavior pathway for a variety of biological insults to the CNS.

This evidence, on a biologic etiology, is further supported by the relative effectiveness of systematic interventions based on social learning theory and operant condition- ing attempting to assist these pervasive delayed and dysfunctional children. First, Lovaas, Berberich, Perloff and Schaeffer (1966) taught autistic children to speak, relying on imitation and reinforcement. This was the first breakthrough in the treatment of autistic children who had hitherto been either institutionalized, along with the mentally retarded, or found themselves in the back wards of psychiatric facilities. Although a breakthrough of sorts, it also heralded the beginning of asking parents and families of autistic children to become active co-therapists. In fact, in a follow-up of their original work, Lovaas, Koegel, Simmons and Long (1973) clearly demonstrated the greater gains achieved when the parents participated in treatment. Thus, parents were frequently called upon to engage in the 24-hour care required in dealing with severely disturbed, tantruming, self-abusing or aggressive autistic children. More recently, Lovaas (1987) reported on the success of early intervention with preschoolers urging clinicians to start early and to rely on extensive daily training. Because as many as 50% of autistic children remain mute or minimally verbal, despite extensive speech training efforts, an alternative to speech-only training was independently initiated by members of our team (Webster, McPherson, Sloman, Evans & Kuchar, 1973) and by therapists a t The Michael Reese Hospital (Creedon, 1973). Simultaneous communication training combines signs and speech, and has been shown to be effective with autistic children (Remington & Clarke, 1983), but, more specifically, the nonverbal and concomitantly lower functioning subgroup (Carr, 1979; Konstantareas, Oxman & Webster, 1977). Insofar as communication is the cornerstone to any skill acquisition, speech-only or simultaneous communication training are the two main paradigms to treatment along with extensive efforts to manage and control, through behavior modification, occupational therapy, imitation training, etc., some of the more difficult and visible symptoms autistic children present.

In sum, over a span of almost 30 years, extensive research on the etiology of autism and its treatment have led clinicians and researchers to conclude that autism is a lifelong, severe dysfunction due to subtle, and at times clear-cut neurologic sequelae and that it requires early and competent identification and prompt intervention to remedy pervasive deficits.

ADVERSE IMPLICATIONS OF AVOIDING INDIVIDUAL DIAGNOSIS

Let us now see how any approach which deflects attention to parental or family contributions can potentially have adverse implications for the autistic child and his or her family. To enumerate some of the possible negative concomitants:

1. Not providing a diagnostic statement for the disturbed child makes the challenge of understanding his or her problem even more difficult and puzzling to the family. In view of the severe, and at times bizarre, characteristics of some children, particularly the autistic and schizophrenic, if one were to reframe the child’s behaviors as reflective of parental or family pathology, one might frighten and puzzle other family members. Family members, particularly mothers, are already experiencing the agony of self- reproach over their child’s problems. In our work with families of autistic children, even


when we explicitly absolve them of responsibility for causation, parents insist on self- blaming for things they objectively understand that they could not help. This is illus- trated by the case of an immigrant mother whose father died in Italy while she was pregnant with the autistic child. She attributed the child’s problems to the grief over her father’s death and felt exceedingly guilty for having caused the child’s difficulties. Our reassurance that this was not likely, did not appear to alleviate this mother’s distress.

2. A concomitant of the above: Attributing the disturbed child‘s pathology to his parents and siblings, might result in considerable guilt-induction, with its derivatives of shame, remorse and self-hatred, in the other family members (Terkelsen, 1983). Projecting anger and hostility towards the child may then follow at a time when support and understanding would have been required. Thus, reframing of the problem could result in confusion, hostility and avoidance of the autistic member by other family members. Furthermore, such an approach could make the therapist be seen in a conspira- torial split between him or herself and the patient on the one side and the “bad” family on the other.

3. Not only the child, but the therapists would have become the target of the family’s anger and hostility. They would have been the ones who implied that such extreme and inappropriate behaviors as self-mutilation, unprovoked aggression, pica and incontinence are caused by the family members’ pathological transactions. Since such views run counter to most people’s commonsense notions of causation, they could, thus, be reacted against rather strongly by family members, usually through indigna- tion, denial and rejection. Such feelings against the therapist could seriously undermine the therapeutic alliance, particularly crucial with children presenting these chronic conditions, and whose families are in need of ongoing support (ef. Ziegler & Holden, 1987). Parents and siblings may quickly detect any unstated views on the sociogenic causation of the patient’s problem, be it family or parent originating, when therapists focus their inquiry on family life prior to the onset of illness. In such a situation, the family members’ peculiar behaviors, their attempts a t denial, destruction of meaning, neutralization of interpretive statements and general ambivalence may actually be secondary to feeling blamed for the patient’s problem (see also Terkelsen, 1983).

4. Another negative concomitant, if one were to conceptualize the parents or family as being responsible, would be preventing a speedy access to appropriate interventions to ameliorate the problem. Such interventions are far more effective when they begin early (cf. Lovaas, 1987; Ziegler & Holden, 1987). By the therapists’ pursuing an inappropriate and irrelevant, if not outrightly harmful approach with individual family members or the family, precious time is lost, family trust in the effectiveness of psychother- apy, in general, dwindles and serious breakdown of the family may occur. Elsewhere (Konstantareas, 19881, we have described how problems around the diagnostic-identification process severely tax the family’s resources. Lapin and Lapin (1976), parents of an autistic 6-year-old boy, poignantly describe their difficulties in having their child assessed:

One problem we shared, unfortunately with other parents, was that it (autism) was misdiagnosed early when we and Shawn most needed help. What we and all parents need is a definitive statement from the doctor that our children have autism and not some mumbo-jumbo about “funny development” or “slow development,” or ‘‘he’ll outgrow it,” or “possible retardation with autistic features.” Most certainly, we don’t need to be told we have disturbed kids because we are uptight or “neurotic.” (p. 287)

Considering the limited availability of competent programming and the long waiting lists, relying on an inappropriate treatment model seriously limits the child’s improve- ment opportunities and future adjustment. Such delays may also have long-term ramifications and spell the difference between complete dependency versus marginal adaptation.


5. In many instances, an additional problem is the financial hardship sustained by the family, along with the psychological and emotional one. Ziegler and Holden (1987) provide an eloquent account of a father’s quest for help for his attention deficit disordered child and how taxing it was for the family’s income and time availability. While the family, as a whole, was exposed to therapy and was uncertain, confused and unable to cope with the child’s problem, a full one-third of the family’s income was used for treatment. We have many comparable vignettes from our work regarding the “run around” many families experience and the need to engage in expensive, sometimes privately financed assessments, before arriving at the appropriate treatment approach for their child.

6. Preventing access to community resources such as week-end relief homes, “special needs” workers, summer camps, and athletic and other community facilities is another negative effect of any intervention which avoids precise problem identification. Community services are frequently restricted to special groups. In Ontario, Canada, for example, there are camps run exclusively for autistic children; “special needs” workers are assigned on the basis of diagnostic information and severity of delay or dysfunction, while recreation programs are mostly segregated by handicap. Paradoxically, not to be labeled rather than to be labeled, has adverse implications for the child.

7. Another drawback appears to be the inevitable tendency of most parents to adopt corrective strategies of their own to change their parenting styles, styles which the specialists have told them are responsible for their child’s problems. In our experience, many parents, particularly mothers, may become extremely permissive towards their autistic child, explaining their fear that the child is “fragile” and “emotionally sensitive,” hence, they do not want to overburden him. One mother in our series, whose child made incessant nonverbal but quite eloquent motoric and vocal demands to leave the assessment room by pulling at her face and body, provides one such example. When this mother was asked by the interviewer how she could possibly tolerate her child’s attempts at scratching her face, pulling her hair and screaming at her, she reluctantly answered that she couldn’t see what else she could do. When shown by the therapist how to gently but firmly demand that the child stop, she was both momentarily confused and shocked but also profoundly relieved. “Wouldn’t his feelings be hurt?’ she asked. When reassured that this would be the technique the therapist would recommend, she repeatedly demonstrated that her all-tolerant behavior could be appropriately disinhibited and be dis- played when she no longer feared that it harmed the child.

8. Finally, lack of clarity as to the causation of the child‘s difficulties, the treatment choices available, prognostz outcomes, possible additional problems which may arise as the child grows older, etc., seriously impair the family’s chances of resourcefully adapting to the problem. The usefulness, as well as side effects, of medication may have to also be discussed and explored with the family. Information on ongoing etiologic factors and treatment innovations is also useful and needs to be shared with the family as it becomes available. Most importantly, the parents need to be absolved of their guilt of somehow being responsible for their child’s problems (see also Schopler & Reichler, 1971; Terkelsen, 1983). This, as most in the field are well aware, is not a single-trial event. It has, instead, to be negotiated over a long enough period to allow for its slow, if never quite complete acceptance. Furthermore, it should be renegotiated for most families at the child’s key developmental transition periods, such as upon his entering regular school, in adolescence and upon reaching adulthood (see also Ziegler & Holden, 1987). Since some autistic children may have inherited their autism, genetic counseling for the child‘s siblings, as well, may be recommended since many are understandably concerned for their own procreation. We feel strongly that failing to identify the problem child as the actual patient, deprives the family of access to most resources and information they legitimately require to cope with the frequently catastrophic effect of having a seriously disturbed member in their midst (see also Johnson, 1987).


A PSYCHOEDUCATIONAL APPROACH IN AUTISM

Let us now present the elements of a variant of the psychoeducational model (Anderson, Hogarty & Reiss, 1980; Johnson, 1987) as we have employed it over the last 10 years with autistic children and their families in our clinic. We arrived at it after extensive work in implementing day treatment programs with nonverbal children, relying on the simultaneous (sign and speech) communication training approach (Kons- tantareas, Oxman & Webster, 1977). This was subsequently used as a demonstration model, aiming at the clarification of variables thought to be responsible for the relative effectiveness of this approach, particularly with nonverbal children (Carr, 1979; Kons- tantareas, 1985).

In the early stages of our work, our interest in including the family lay chiefly in having them continue behavioral training in the home. Parents turned out to be quite variable in the diligence with which they carried out this rather crucial recommendation (cf. Lovaas, et al., 1973). Some were unable or unwilling to attend weekly sessions on behavior management and sign language acquisition, hence were unprepared to meet their children’s fledgling efforts to sign to them, potentially extinguishing these new behaviors. Needless to say, this caused considerable concern to us. In visiting homes and talking to these parents, we slowly became sensitized to their intense stress a t having an autistic child, a stress superimposed on their own, sometimes precarious, marital state and disharmony.

The “negative spiral of interacting stress” in families of children with biologically based severe. disabilities, aptly described by Johnson (1987), was clearly in operation with many of our parents, particularly the mothers. The parents’ previous experiences with professionals were hardly conducive to promoting trust and therapeutic alliance with us. Many of these parents had already been implicitly blamed for their child’s difficulties by judgmental therapists who frequently inquired whether the pregnancy with the autistic child was planned or whether the child was breast-fed. Yet, there was a subgroup of parents who appeared to have accepted our view that they had not caused their child’s difficulties and followed many of our child behavior management recommendations. They were the resilient breed, with a future orientation and a pragmatic attitude towards life. More research into the characteristics of these people is urgently needed so that we can learn more about effective coping strategies (see also Bristol, 1984; Marcus, 1977).

This early awareness prompted us to systematically examine how parents perceived their autistic child’s difficulties and what variables were responsible for moderating the inevitable parental stress. Like other investigators working with different disorders (Ziegler & Holden, 1987), we also arrived at the crucial realization that, by asking the parents how stressed they were, we concurrently communicated our awareness and concern for the child’s, as well as the entire family’s, welfare. We obtained considerable systematic information as to the factors which exaggerate stress and how child, parental personality characteristics and community resources affect family functioning in these chronically stressed families (cf. Konstantareas & Homatidis, 1988). Knowledge as to whom each parent feels closest to in the family, degree of each parent’s involvement with the disturbed child, involvement of siblings and how they are dealt with as well as reactions of extended family members, proved invaluable to the calibration of our recommendations. This provided the impetus for a turning point in our work, as we began to concentrate on comprehensive family assessments and on the provision of specific recommendations regarding treatment based on the developmental readiness of the autistic child.

Our research findings convinced us that diagnostic clarity was the key to absolving the family from the burden of confusion, false hope and never-ending assessments (Lapin


& Lapin, 1976). Many of these families had already seen three, four or more professional agencies before coming to us. To help them terminate the unproductive "run-around," we began providing extensive information as to why we thought their child was autistic, what criteria had to be met for the diagnosis to be offered and how a diagnostic label could be used effectively to secure services. We discussed available evidence on causation and answered parental questions related to issues around treatment options. We also provided literature on the disorder and offered to be available to provide our assessment findings to denying grandparents who may, a t times, effectively boycott parental efforts to accept the child's disturbance and to focus attention on his or her education.

Like other workers in the field (e.g., Shea, 1984), we were, and still are, acutely aware of the crucial relevance of parental emotional state, level of expectation and ability to accept the frequently catastrophic information that one's child is autistic. Although the therapist's task is relatively more manageable when the child's level of developmental functioning is high, it becomes quite difficult and challenging when it is low. When the child's autism is further complicated by severe retardation, it is not easy to be both empathic towards the parental plight and objective and truthful in conveying the relevant information. It is quite impossible for a therapist in such a situation to be even guardedly optimistic as to the child's prognosis.

Focus of Recommendations One of the ways to counteract the inevitable fostering of feelings of despair in the

parents, is redirecting parental attention towards recommendations, which we have employed to some advantage. Information as to what is to be done with the child in the immediate future is given to the parents in a systematic and comprehensive manner. Included in this are: (a) mode of communication to employ in training, i.e, speech only, signs accompanied by speech, picture boards or, when the child is young andlor still in the sensorimotor intelligence period (Piaget & Inhelder, 1969), prelinguistic exercises such as shared attention, turn-taking, gestural and imitation training; (b) the pre- academic or academic tasks the child may be exposed to by his parents and teachers, e.g., seriation, classification, number concept, discrimination of age, sex and other socially relevant dimensions, etc; (c) self-help, life-skills or prevocational training, depending on the child's existing skills and abilities in these areas; (d) promotion of physical development through playground, gym, recreational and community experiences; (e) social interactional skills training, through partial or full integration in the regular classroom, playground or neighborhood or within the family context, by involving siblings and other relatives as appropriate; (fl assistance is also crucial with such difficult child management problems as encopresis, food fetishes and peculiarities, temper tantrums, inattention and self-abusive or other dysfunctional behaviors autistic children display; (g) for the small percentage of children whose hyperirritable and driven behaviors make them extremely difficult to control, and who have sleeping difficulties, judicious symptomatic relief through medication may be attempted (cf. Campbell, Petti, Green, Cohen, Genieger & David, 1980).

Needless to say, extensive and systematic psychological testing with flexibility of approach and the incorporation of appropriate evaluation instruments measuring sensorimotor intelligence is a precondition to formulating recommendations. Unless a child's developmental skills and deficits are carefully evaluated, it is difficult to arrive at conclusions as to what the goals of intervention should be. Autistic children present with a broad spectrum of capabilities and deficits. It is the cornerstone of the psychoeducational approach to ascertain the educational needs of both the child and the family. Knowledge of child development is crucial here. Along with diagnostic clarity, knowledge of the disorder's characteristics, the limitations of various approaches, as well as

66 JOURNAL, OF MARITAL AND FAMILY THERAPY January 1990

identification of the approach most likely to suit a child’s needs at that point in time, are particularly helpful to parents.

Some of the Advantages of the Psychoeducationul Approach In considering the positive ramifications of the psychoeducational approach we

propose, the following become apparent: (a) it communicates the therapists’ nonjudg- mental care, sympathy and concern for the family, as well as for the child; (b) it absolves the family of retrospective and nonproductive recriminations as to what or who might be responsible for the child’s difficulties, since the biological underpinnings of the condition are presented; (c) through the dissemination of information, it demystifies the child’s condition and allows for a collective attempt on the part of the therapist and family to deal with the problem in a responsible, matter-of-fact, goal-oriented and constructive manner; (d) it renders the therapists advocates for the child and family as to access to scarce resources such as good quality programs, “special needs” workers, parental relief, information and access to parental and sibling self-help groups, to community facilities, benefits for the handicapped, etc; (el it allows families to make their own decisions as to how to best place their child. Although therapists provide information only as to facilities, they do not offer judgmental statements as to whether a child should or should not be maintained in the home; and (0 it demands that professionals be well-read and informed about all aspects of the condition and be available for ongoing case support, crisis management and counseling with respect to all key aspects of the disturbed individual’s life. Accountability, empathy, flexibility, openness to new knowledge, non-guruism and honesty are some of the key ingredients of the psychoeducational approach (cf. Anderson, 1983). As such, it has a distinct relevance to families of children or adults with a well-defined biological disorder. Although it is one of the few researched approaches of intervention with families (cf. Johnson, 19871, it is far from being well researched (Anderson et al., 1980). Systematic research into its main components should be the next priority by its practitioners, now that we have become aware of its utility.

Elsewhere, we presented more extensive information on the crucial relevance of the need on the part of key professionals to coordinate the efforts of members of many different disciplines on behalf of the autistic child and his or her family (Konstantareas, 1988). As autism and PDD are disorders of low incidence, few centers specialize in their identification and treatment. Where specialization is available, the input of behavioral psychologists, special educators, speech therapists, physiotherapists, occupational therapists, social workers and psychiatrists, among others, is available. These professionals’ contribution may vary across the autistic person’s life span. Thus, speech therapists and physiotherapists are called upon to be involved in the earlier years. Occupational therapists and community placement personnel may be asked to place the higher functioning autistic and PDD person into the community, under varying degrees of supervi- sion. Throughout this period, the family may require sensitive counseling and support as it attempts to negotiate its key developmental crises. A coordinating professional is, therefore, asked to play the difficult task of maintaining feelings of mutual trust and support between agencies which offer services to children with special needs and their families. Such a professional should possess a healthy appreciation of the different areas of expertise required to be called upon at different times.

In our work on factors affecting stress in these families, we have found that concerns about the correctness of diagnosis and what type of program best fits their child’s needs are most pressing, and because of problems around these issues, stress may be quite high during the preschool and primary school period. Denial tends to be concurrently high during this period as well, with a down-playing of symptom severity (Konstantareas & Homatidis, 1989). By adolescence, when the autistic or PDD individual’s handicaps


become more compellingly evident, parental denial appears to decrease. By this time, the parents' physical strength decreases, as the long years of unremitting care and self- sacrifice take their toll. The child does not become cured, the problems may, in fact, become accentuated with the advent of adolescence and the concomitant increase in the child's physical presence and stamina (Schopler & Mesibov, 1983). It is usually at this time that families which hitherto had actively opposed placement outside the home become willing to discuss it with professionals. This may eventuate in the placement of the autistic individual outside the home. Throughout this lengthy process the advantages of the psychoeducational approach we have adopted and are proposing for consider- ation are obvious.

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A PSYCHOEDUCATIONAL MODEL FOR WORKING WITH FAMILIES OF AUTISTIC CHILDREN