J. Child Psyclal. Piychial. Vol. 30, No. 3, pp. 459-470, 1989 0021-9630/89 $3.00 + 0.

00
Primed in Great Britain. Pergamon Press pic
© 1989 Association for Child Psychology and Psychiatry

Assessing Child Symptom Severity and

Stress in Parents of Autistic Children
M. Mary Konstantareas* and Soula Homatidis*

Abstract—Parents of 44 autistic children rated their children's symptom severity and their
own stress on a 14-item symptom scale. Thirteen child and family characteristics were also
examined to assess how they affected symptom perception and stress. Preschoolers were
rated less symptomatic by their parents than by clinicians. Lower functioning, nonverbal,
odd-looking, self-abusive, seizuring and hyperirritable children were rated more symptomatic
than their peers. Best predictor of stress for both parents was a child's self-abuse; for mothers
hyperirritability and older age were Eilso associated with elevated stress scores. Compared
with parents of matched normal children, mothers of autistic children reported the most
aggravations and expressed the need for additional support from their spouses.

Keywords: Autism, symptom perception, parental stress

Introduction
Descriptive accounts of stress and coping in families of dysfunctional children are
available (e.g. Kaslow & Cooper, 1978; Marcus, 1977), yet there is very little systematic
work on the impact of autistic children on their parents and siblings.
Holroyd, Brown, Wikler and Simmons (1975) were the first to address the issue
of stress in autism. Using the Questionnaire on Resources and Stress (QRS), a 285
true-false instrument, and clinical interviews, they reported considerable stress in
the 29 families they examined. In a subsequent study, Holroyd cind McArthur (1976),
also using the QRS, reported greater overall stress in parents of autistic children than
in parents of mentally retarded children or parents of children attending an out-patient
psychiatric clinic,
DeMyer (1979) reported extensively on work with 33 families of autistic children
and matched normal controls with a mean age of about 4 yrs. Although hers was
a comprehensive study, the results were mainly presented as frequency scores rather
than being statistically analyzed. The fmdings suggested physical and psychological
tension in all mothers of autistic children, guUt in 66% and uncertainty as to mothering

Accepted manuscript received 16 June 1988

'Clarke Institute of Psychiatry, Toronto, Ontario, Canada

Requests for reprints to: Dr Mary Konstantareas, Clarke Institute of Psychiatry, 250 College Street,
Toronto, Ontario, Canada, M5T 1R8,
459
460 M, Mary Konstantareas and Soula Homatidis

ability in 33%. Fathers were also affected, but they were apparently mainly influenced
indirectly through their wives' reaction and pain at having an autistic child. More
recently, Bristol and Schopler (1983) reported on some of the fmdings from unpublished
research by Bristol (1979), in which degree of dependency and physical incapacity
as well as difficult personality characteristics in the autistic child resulted in greater
parental stress. With the exception of this unpublished study, the other studies,
although heuristic, relied on binary choices for self-report measures (Holroyd et al.,
1975; Holroyd & McArthur, 1976), on open-ended interviews to allow for "candor
and ease" in the respondents (DeMyer, 1979, p. 12), or did not include a statistical
treatment of the data. Thus we have tentative but not conclusive information on the
issues in question.
For the last few years, we have been collecting extensive data on a group of autistic
children and their families, as well as on normal, learning disabled and mentally
retarded children, in an effort to clarify three sets of variables—child characteristics,
parental personality characteristics and coping resources, i.e. formal or informal social
supports—and the complex relationships among these variables.
In this, the first paper of a series, we address the issue of parental stress as a function
of the autistic child's presenting symptoms and the family's characteristics. We first
examined how mothers and fathers evaluated the presence and degree of expression
of 14 key symptoms in their autistic offspring, our reasoning being that to evaduate
stress, one needs to assess how symptomatic the parents perceive their children to
be. We also wished to assess how mothers differ from feathers in their symptom
perception. The second aim of the study was to evEiluate stress as a function of each
symptom to determine a possible differential impact of some symptoms over others
and to clarify the relationship between symptom severity and stress. A third goal was
to evaluate how symptom severity and concomitant stress related to a number of child
characteristics. It is intuitively obvious that the range and severity of presenting
characteristics in autistic children should have direct relevance to how they afTect their
parents. A hyperirritable child who self-stimulates, constantly vocalizes and paces
for a good part of the day, for example, is more likely to adversely affect his mother
or father than a quiet, withdrawn and unresponsive child. The latter could also
adversely affect the parents, but not in the direct, ongoing and immediate way that
the hyperirritable child does. In addition, a seizuring child who needs ongoing
supervision, or a self-abusive child, would most likely be more stressful to his parents
and family than a docile and quiet child. Despite the fact that common sense favours
this conceptualization, however, existing evidence in the general area is limited,
although descriptive accounts are more numerous. Our fourth aim was to examine
the effect on stress of such other characteristics as the family's socio-economic status,
(SES), family size, maternal working status and the social supports and aggravations
available to the family.

Method
Subjects
Forty-four families with an autistic child participated. They came from a broad geographic area,
seeking a diagnosis for the child and recommendations on treatment and placement. All cases were
 Symptom severity and parentat stress in autism 461

included as they came in, and were thus representative of the poputation of autistic children in Ontario,
Prior to participation, they signed an informed consent form. The diagnosis of autism was given using
the criteria of the DSM-III (American Psychiatric Association, 1980), and was agreed upon by a child
psychologist and a child psychiatrist. Of the 44 austistic children, 32 (73%) were boys and 12 (27%)
were girls; 18 (41 %) were firstborn or only children and 26 (59%) were later-born. Their ages ranged
from 2 yrs 4 mnths to 12 yrs 7 mnths, with a mean of 6 yrs 10 mnths. Maternal age ranged from 23
to 46 with a mean of 34,7 yrs. Paternal age ranged from 23 to 52, with a mean of 37,9 yrs. The SES
of the families was assessed by the Blishen scale (Blishen & McRoberts, 1976), which is standardized
on Canadian samples.
Our extensive family interviews suggested that aside from their major concerns about the autistic
child, almost all parents functioned well. There were two exceptions to this: one of the fathers was in
therapy for unipolar depressive illness during the child's assessment, while one of the mothers attempted
to commit suicide by an overdose of sedatives 6 mnths before the child's assessment at our clinic. Quality
of marriage, although not evaJuated directly for ethical reasons since the families did not seek counselling,
was indirectly assessed. Each parent's closeness to every other nuclear family member, including the
spouse, was evaluated using a 5-point scale. Finally, interviewing on respite care revealed that this
consisted primarily of periodic baby-sitting through private arrangements and, for five of the families,
access to baby-sitting by a "special needs worker" through government support. Because of distance
or for other reasons, caring for the autistic child by members of the extended family, particularly
grandparents, was limited.
Prior to the clinical assessment, parents were requested to complete a questionnaire on their child's
medical and developmental history. By being required to complete the questionnaire at home, it was
possible for them to consult any available records, thereby ensuring greater reporting accuracy. On
the basis of this information, a variety of child characteristics, some of which appear in Table 1, could
be ascertained. As can be seen from Table 1, sleeping problems, experienced by 31 of the 44 (70%)
children at some point, were the most frequent area of difficulty. Having suffered prolonged fevers
or head injury were present in 41 % and 23% of the sample, respectively. In addition, 27% of the children
engaged in self-abusive behaviours, while 36% were not toilet-trained at assessment time, despite the
fact that their mean CA was 6 yrs 10 mnths at the time.

Table 1. Child characteristics

Area of difficulty Children displaying difficulty
A^ (%)
Experiencing sleep problems 31 70
Not toilet-trained
(urine and bowels) 16 36
Suffered high or prolonged fevers 18 41
Suffered head injury 10 23
Abnormal EEG 7 28"
Seizures 5'' 11
Self-abusive behaviours 13 29,5
"The percentage of abnormal EEGs is calculated on the basis of 25 children for whom
EEG results were available,
''2 of the 5 children were at the time not medicated.

Procedure
Symptom and stress ratings. The children's symptoms were rated by two clinicians, using an adaptation
of the Childhood Autism Rating Scale (CARS) (Schopler, Reichler, DeVellis & Daly, 1980), This scale
is well known in the field. It has an internal consistency of 0,94 and a concurrent validity of 0,84, based
on comparisons to clinicians' ratings (Parks, 1983), The scale was chosen after considerable pilot work.
462 M, Mary Konstantareas and Soula Homatidis

Each of its 14 symptoms appears to be quite independent of the others. For example, a child may be
rated as presenting with extensive visual, but not tactile or auditory, preoccupations. An extensive protocol
of activities and situations (Konstantareas & Macklin, 1982), which set the occasion for eliciting each
symptom, was employed to rate the children after approximately 4-6 hours of observation. Each of
the 14 items, and an overall global impression item, were rated on a 4-point scale, with 1 being normal
for age and 4 extremely abnormal. Agreement between clinicians was recorded only if the raters were
within half a point of each other for each item. Inter-rater agreement was computed for 64% of the
cases, and it ranged from 73% to 100%, with a mean of 91 %, The primary clinician's (M,K,) ratings
were used for the data analyses.
Parents also rated their children's symptoms on the CARS, and subsequently indicated on a 4-point
scale how much they were stressed by each symptom, with a score of 1 corresponding to "not at all
stressed" and 4 being "extremely stressed". The sum of the 14 symptom ratings constituted the total
symptom score, and the sum of the 14 stress ratings constituted the total stress score. Since pilot work
suggested that parents could not respond to questions on symptoms unaided, the ratings were obtained
during a semi-structured interview. Each parent was interviewed separately. Care was taken to avoid
influencing the direction of parental ratings. To maintain comparability of interviewing style, at least
80% of the interviews were conducted by the same clinician. In addition, interviews were audiotaped
and were subsequendy played back to confirm comparability across time and between interviewers.
During a semi-structured interview, each parent was further asked to rate in turn, on a 3-point scale
(0 = none, 1 = some and 2 = great deal), the degree of support and aggravation he/she had experienced
in dealing with each of 10 community and social agents. The specific agents and resources involved
included parents and siblings, in-laws, friends, neighbours, the workplace, church affiliations or religious
beliefs, parent groups, schools, doctors and social agencies. In this manner, information was gathered
on two measures of support—total number of supportive agents (maximum score = 10) and degree
of support experienced (maximum score = 20)—and two measures of aggravation—toted number of
aggravating agents (maximum score = 10) and degree of aggravation (maximum score = 20), Parents
were also asked to comment on whether or not they desired additional support from their spouse.
Child andfamily variables employed. Thirteen independent variables were used. The child characteristics
examined were sex, age, cognitive level, verbal ability, hyperirritability or "driveness", facial oddity,
birth order, self-abusive behaviours, seizures and sleep disturbance. Family size, the family's SES and
maternal working status were the family-related variables examined. For age, the children were divided,
using a median split, into a younger group (up to 6 yrs 6 mnths) and an older group (6 yrs 7 mnths
to 12 yrs 7 mnths). Level of cognitive ability was based on performance on the Leiter (Leiter, 1969)
test, a nonverbal I,Q, test well suited to this population (Shah & Holmes, 1985), Those who were
untestable (A^= 30) were considered as cognitively lower-functioning, while those testable (A^= 14) were
higher-functioning. The mean l.Q. of this group on the Leiter was 72,2, Children were rated as verbal
{N= 17) if they could form at least 2-word phrases. Nonverbal status was assigned to children (A'^= 27)
who only vocalized uttering gibberish, or had only a few isolated words, usually employed in an echolalic
manner. Inter-rater reliability for deciding on verbal status using these criteria was 82 %, A binary
rating was made as to whether the child had a hyperirritable or "driven" quality to his/her behaviour.
This refers to the degree of restlessness and non-goal-directed behaviour the child displayed, as well
as to the amount of effort required to redirect or keep him/her on task. Twenty-four children were
rated as "driven" and 20 as "nondriven", with an inter-rater reliability of 83%, A binary rating was
made as to the child's overall facial appearance, A child was rated as "odd-looking" (A?= 23) if there
was a stigmatized, vacant or unusual facial expression that made him/her appear anomalous. Otherwise,
the child was rated as normal-looking (A^= 21), Inter-rater reliability for facial oddity was 84%, Self-
abuse was recorded for any behaviour directed against the self, e,g, hitting, scratching, pinching, biting.
In all instances these behaviours were displayed during the assessment. Sleeping problems encompassed
either waking up early or having difficulties fsdling asleep at night. Seizures included only grand mal-
episodes of some duration, and were either in remission or active at time of assessment.
Nine (20%) of the families were categorized as upper-class (70,00 or above on the Blishen), 11 (25%)
were middle class (between 55,0 and 69,99), 11 (25%) were lower-middle class (between 40,00 and
54,99), and 13 (30%) were working class (below 39,99), Nineteen mothers (43%) worked either part-
or full-time, while 25 (57 %) remained at home. Family size varied from one child (A'^= 6) to four (A^ = 6),
The majority of families (A^= 24) had two children, and the remainder (A'^= 12) had three.
 Symptom severity and parental stress in autism 463

Results
Symptom ratings
As shown in Table 2, parents were generally in close agreement in rating their
child's symptoms. Of the 14 symptoms, impairment in verbal communication was
rated highest by all raters. Unevenness in cognitive functioning'^ and impairment in
human relations were rated next in severity by the parents. To clarify the possible
existence of across-rater differences, MANOVAs were applied to these data. Significant
findings emerged for nine of the symptoms. Multiple comparisons using t tests
(/)< 0.05-0.02) showed that mothers' and fathers' ratings were different from the
clinicians' for six of the nine—impaired imitation, inappropriate use of objects, poor
verbal communication, resistance to change, auditory preoccupations and extremes
in activity level. The fathers' scores differed from the clinicians' for three additional
symptoms—inappropriate affect, impaired human relations and near-receptor
preoccupations. Thus fathers differed from the clinicians in nine symptoms and mothers
in six. Except for impaired verbal communication, where parents gave their children
higher scores, the clinicians rated the children as more symptomatic. Mothers,
however, also rated their children as more symptomatic than their husbands for two
symptoms—impairment in human relations and inappropriate affect.

Table 2. Mean ratings of mothers, fathers and clinicians for each of the 14 CARS symptoms and
the corresponding F values
Mean symptom ratings
Symptoms Mothers Fathers Clinician ^2,86)
Impaired human relations 3,01 2,72 3,05 3,75"
Impaired imitation 2,43 2,50 2,84 5,69"
Inappropriate affect 2,67 2,27 2,95 7,65"
Inappropriate use of body 2,84 2,56 2,75 1,81
Inappropriate use of objects 2,73 2,61 3,00 4,16*
Resistance to change 2,10 2,19 2,72 6,37*'
Visual preoccupations 2,56 2,65 2,84 2,15
Auditory preoccupations 2,18 1,99 1.11 12,39**
Near-receptor preoccupations 2,51 2,30 2,80 5,29**
Anxiety reactions 2,63 2,57 2,42 0,61
Impaired verbal communication 3,56 3,57 3,32 4,69*
Impaired nonverbal communication 2,52 2,67 2,86 2,56
Extremes of activity 2,65 2,41 2,98 6,79**
Uneven intellectuail functioning 3,05 2,98 2,99 0,13

Total Score 37,43 35,98 40,28 8,92**

'p < 0,05

^Unevenness in cognitive functioning was assessed by clinicians on the basis of the score scatter on
either psychometric tasks or on the Piagetian tasks used for the children who were not testable by
conventional I,Q, tests. Parents were also asked to assess how variable their children were in dezding
with intellectual demands.
464 M. Mary Konstantareas and Soula Homatidis

Analysis of the total symptom scores, shown in Table 2, yielded a significant

difference across raters [F (2,86) = 8.92, />< 0.001]. Multiple comparisons showed
that, generally, as with the individual symptoms, the clinician ratings were higher
than the ratings of both mothers [^(43) = 2.48, p<0.02] and, particularly, fathers
[/(43) = 3.99, p< O.Ol]. The parents themselves gave comparable total symptom scores
to their children.
To' examine how child and family characteristics related to how the children's
symptoms were rated, a series of repeated measures ANOVAs were used. All three
raters assessed the children as more symptomatic if they were lower-functioning
l,42) = 5.95, p<0.02], nonverbal [j^l,42) = 8.44, p<O.Ol], hyperirritable
(l,42) = 4.36, p<0.05], odd-looking [F{1,^2) = 10.62, p<0.002], self-abusive
^l,42) = 5.05, p<0.03] or seizuring [/^1,42) = 3.76, p<0.06]. An interaction
between CA and raters [F{1,42) = 4.46, p < O.Ol] showed that younger children were
rated by their mothers (M = 36.1) and fathers (M = 34.4) as less symptomatic than
by the clinician (M = 41.5). For older children, parental ratings did not differ from
the clinicians'.

Symptom-related stress and related characteristics

Table 3 provides the mean stress ratings associated with each symptom for fathers
and mothers, since there were no clinicians' ratings, and the F ratios and probability
levels of each. As shown, there was a remarkable similarity in the degree of reported
stress for mothers and fathers. Only two symptoms were differentially stressful to
parents. Mothers were more stressed by their children's near-receptor preoccupations
(smelling, licking, nibbing), while fathers worried more about their children's inability
to speeik.

Table 3. Mean stress ratings (range 1-4) for mothers and fathers, and the F values
Mean stress ratings
Symptoms Mothers Fathers Fl(l,43)
Impaired human relations 2,41 2,13 2.40
Impaired imitation 1,80 1,92 0,92
Inappropriate affect 2,48 2,24 1,49
Inappropriate use of body 2,49 2,11 3,69
Inappropriate use of objects 2,28 2,03 3,13
Resistance to change 1,76 1,63 0,64
Visual preoccupations 2,07 2,13 0,13
Auditory preoccupations 1,78 1,72 0,18
Near-receptor preoccupations 2,39 2,08 4,44'
Anxiety reactions 2,60 2,30 2,63
Impaired verbal communication 2,74 3,10 4.34'
Impaired nonverbal communication 2,01 2,09 0,20
Extremes of activity 2,35 2,31 0,08
Uneven intellectual functioning 2,73 2,67 0,06

Total Score 31,95 30,44 1,81

'p < 0,05
 Symptom severity and parental stress in autism 465

Next examined was the question of how each parent's 14 symptom scores given
to his/her child were related to that parent's total stress score. A stepwise regression
analysis was felt to be most appropriate for this purpose. Results showed that 38%
of the fathers' total stress score was determined by only two of the 14 symptoms—
lack of verbal communication and anxiety reactions. For mothers, three symptoms—
inappropriate use of body, visual preoccupations and inappropriate affect—accounted
for 38,5% of their total stress.
How the child and family independent variables related to each parent's total stress
was then examined. Stepwise regression analyses showed that, for fathers, the child's
self-abusive behaviour was the best predictor of stress [i^(l,41) = 4.53, j& < 0.04]. For
mothers, the best stress predictor was also the child's self-abusive behaviour, followed
by hyperirritability and then by age, with greater stress being associated with self-
abusive, hyperirritable and older children [i^(3,39) = 5.90, p< 0.002],
Parents' stress ratings were also examined with respect to their own symptom ratings.
Not unexpectedly, significant correlations were found between symptom and stress
ratings for both parents. For divergent stress ratings between mothers and fathers,
of mothers who rated their child's symptomatology as more severe than their
husbands, 78% also had higher stress scores than their husbands. Conversely, of the
fathers who rated their children's symptoms more severely than their wives, only
47% also had higher stress scores [x^(l,A'^= 40) = 4.18, p<0.05]. Thus maternal
stress scores were more likely to correspond to symptom perception than paternal stress
scores.
Family and community resources and their effect on stress
The data on the two measures of support and the two measures of aggravation
were then examined. In a previous study (Konstantareas & Homatidis, 1988),
comparable data were collected on a group of parents of normal children matched
with the autistic on age, sex and ordinal position of the index child, family size,
maternal employment status and the family's SES, To allow for normative comparisons
of overall levels of support and aggravation, a series of 2 (groups) x 2 (parents) split-
plot ANOVAs were used for each measure. Parents of autistic and normal children
did not differ overall in total number of supportive agents. However, there was a
main effect for degree rather than just number of supporting agents [i^l,74) = 6,69,
/ ) < 0 . 0 l ] , with mothers in both groups reporting a greater degree of support
{M= 10.18) than fathers (Af = 8.92). With respect to aggravations, there was a main
effect for group for number of aggravating agents [i^l,73) = 19.96, p < 0,001]. Parents
of autistic children reported a greater number of aggravating agents (Af = 1.21) than
did parents of normal children {M = 0,473). For degree of aggravation, a significant
main effect for group was also evident [F(l,73) = 22.46, p < O.OOl], with parents of
autistic children reporting not only a greater number of aggravating agents but also
a greater degree of aggravation {M = 1.763) than did parents of normal children
(M = 0.581). In addition, there was a significant main effect for sex of parent
[i^ 1,73) = 6,59, /)< 0.01], with mothers reporting a greater degree of aggravation
(M = 1.44) than fathers {M = 0,92). These two main effects were further modified
by a significant interaction between group and sex of parent [i^l,73) = 4:.57,p< 0.04],
Mothers of autistic children reported a greater degree of aggravation {M = 2,237)
 M. Mary Konstantareas and Soula Homatidis

than either their husbands {M = 1.289), the mothers of the normals (M = 0.622), or
the fathers of the normal children (M =0.541).
Next, returning to the parents of the autistic group only, we examined how
symptom-related stress was affected by the number and degree of supports and
aggravations received. Pearson correlation coefficients revealed that, as expected,
fathers' stress was negatively correlated with the number of supports [r(43) = - 0.317,
p< 0.025], as well as the degree of support they reported to have received
[r(43) = - 0.246, p < 0.05]. Mothers' stress was negatively correlated with the degree
of support they felt they had received [;(43) = - 0.246, p < 0.05], but it was positively
related to the number of aggravations their husbands reported [r(43) = 0.255, p<0.05].
Finally, we examined spouse-related support and closeness. Twenty-four mothers,
but only three fathers, of autistic children expressed the need for additional support
from their spouse, yielding a signficant effect [x\l,N= 85) = 23.22, /?< O.OOl]. The
types of support the mothers wished for from their husbands were: (a) to provide
them with some relief from caring for the autistic child; (b) to assume more
responsibility in disciplining; and (c) to have the husbands helping spontaneously
with daily chores and responsibilities rather than having to be asked. When the ratings
of closeness to their spouse were examined, both mothers and fathers gave the
maximum rating in 92% of the cases.

Discussion
This study provides some helpful insights on how parents of autistic children perceive
their symptoms and how they are affected by their children's symptoms and other
characteristics. First, in overall symptom perception, the parents of the younger
children saw them as less symptomatic than did the clinicians. This is contrary to
available evidence on the attenuation of at least some symptoms with age (Ando,
Yoshimura & Wakabayashi, 1980; Konstantareas, 1987). Assuming the clinicians'
ratings to be more accurate and that symptoms do in fact abate with age, the results
might be at least pardy explained by parental defensiveness in accepting the diagnosis
of autism with its many adverse implications. With younger children parents may
still be engaged in the "diagnostic runaround" (Mack & Webster, 1980), which usually
stops later on, when they come to terms with the diagnosis (see also Bristol & Schopler,
1983; DeMyer & Goldberg, 1983). The possibility that this finding might have been
related to parental age was not substantiated when we statistically examined the relevant
data. Neither symptom severity nor concomitant stress was systematically related to
the age of either mothers or fathers. Of course, it is also possible that, at least to
the parents, symptoms of autism may blend more easily and seem less out of the
ordinary in the case of the active, nonattentive and less mature younger children—
hence they may be less likely to consider them as deviant. Any one of these factors
may account for the results. Based on our extensive clinical experience and best
supported by the evidence, the explanation of parental defensiveness seems the most
plausible. One should of course bear in mind the fact that for individual cases, this
statistical finding may be of dubious clinical relevance. It is the overall group of parents
of younger children who appear to underestimate their children's symptoms.
 Symptom severity and parental stress in autism 467

The degree of agreement between parents on their child's symptom severity was
very high. There were only two symptoms—impairment in human relations and
inappropriate affect—which the mothers rated higher. This may probably be explained
by the "expressive" versus "instrumental" roles—the respective roles which mothers
and fathers culturally assume (Mischel, 1970). Insofar as mothers' rather than fathers'
ratings were closer to the clinicians' ratings, and assuming of course that clinicians
were more accurate in rating the children, mothers may be viewed as being more
closely attuned to their children's affective and emotional spheres.
In rank-ordering the symptoms, highest scores were assigned by both parents to
poverty of verbal communication, unevenness in cognitive ability and impairment in
human relations. In this respect, parents were comparable to the clinicians and, most
importantly, to the literature, which attributes centrality to these three symptoms
for the diagnosis of autism (Ritvo & Freeman, 1978; Rutter, 1978; Schopler et al.,
1980). In terms of stability of rank-ordering of symptoms as assessed by parents,
after this study's data collection, Bebko, Konstantareas and Springer (1987) found
essentially indentical results. Cognitive communication and socioaffective disturbances
were rated as the most severe of the 14 CARS symptoms by the parents of the 20
autistic children studied.
Symptom severity ratings were related to the 10 other characteristics examined
in a rather predictable fashion. Children with low I.Q.s and those who lacked spoken
language were rated as more severely autistic. This concurs with the results of Schopler
et al. (1980), who also found that degree of retardation was positively correlated with
severity of autism. That hyperirritable children were also seen as more symptomatic
may not be surprising, as such children tend to be more difficult to restrain and control
and are oblivious and unresponsive. Yet it is surprising to find so little attention paid
in the literature to this characteristic. The same can be said of the odd-looking children.
Recent efforts to modify the facial appearance of Downs children through cosmetic
surgery address the same point (Arndt, Munro, Lefebvre & Travis, in press). Stigmata
have direct relevance to the labelling process, with concomitant adverse implications
and lowering of expectations for the stigmatized child. Also consistent with
expectations, self-abusive children and those suffering from seizures were also seen
as more symptomatic, owing probably to the visibility of their aberrant behaviours
or symptoms. Turning to stress, against our expectations and the reports of others
(e.g. Patterson, 1980), mothers were not more stressed than fathers, despite the fact
that, as has been shown (Kaslow & Cooper, 1978; Konstantareas & Homatidis, 1988),
mothers are significantly more involved with all aspects of their child's functioning
compared to fathers. This finding has to be restricted to symptom-related stress only,
however, since, using a modified version of the QRS (Holroyd et al., 1975), we have
found mothers to be overall more stressed and to feel more demands and sacrifices
imposed on them than fathers (Konstantareas, 1985). It is interesting that fathers
were most distressed by their children's inability to speak, while mothers were most
distressed by such more visible, immediate and embarrassing symptoms as
inappropriate crying, giggling and stereotypical and bizarre use of body. These
symptoms have ongoing management implications, which would probably fall into
the mothers' daily workload.
Turning to those key child characteristics which most influenced parental stress.
468 M. Mary Konstantareas and Soula Homatidis

self-abusive behaviour turned out to be the best predictor of stress for both parents.
Not only were self-abusive children perceived as more symptomatic, they also adversely
affected their parents. This is not surprising, since self-abusive children are not only
more visibly disturbed, they may also inflict damage to their bodies. In fact, parents
of such children reported to us feeling helpless, ovenvhelmed and frightened by their
child's behaviour. These parents, furthermore, frequently interpreted self-abusive
behaviour as a reflection of their child's inability to relate appropriately to them, their
own poor parenting and management skills and their general ineffectiveness in
parenting them. For mothers, but not fathers, in addition to self-abuse, their child's
hyperirritable behaviour was the second best predictor of stress. Hyperirritability as
used here appears to capture the extreme end of the difficult temperament dimension.
Mothers are more involved in direct caregiving and spend more time with their autistic
children even when the fathers are equally available in the home (cf. Konstantareas
& Homatidis, 1988). It is therefore understandable that they are more stressed when
their child is hyperirritable—i.e. aimlessly walking about or running out of the house,
vocalizing in an ongoing manner or destroying objects. Finally, the older children
were found to be more likely to adversely effect their mothers, mainly because increased
size and strength may make it more difficult for mothers to direct and manage the
older children. Moreover, increased concerns about the child's future placement in
combination with the mothers' advancing age and the wear and tear of caring for
a handicapped child for a number of years tend to exacerbate maternal stress. This
finding is, in fact, consistent with the results reported by Bristol and Schopler (1983)
for their sample.
With reference to the availability of supporting agencies, it was interesting to note
that parents of autistic children received just as many supports as parents of^ normal
children. However, regardless of group, mothers reported receiving a greater degree
of support from these supporting agents than the fathers. This may relate to role
differentiation in the culture, with women assuming the expressive and men the
instrumental role in the family. In this respect, women more than men may be likely
to seek and receive more support from the extended family, workplace, friends and
community agents. It may be "unmanly" for men to do so, as they are supposed
to be independent and self-reliant.
Where parents of autistic children differed from parents of normal children was
in their reporting to receive aggravations from more of these same agents, and also
in receiving a greater degree of aggravation. Furthermore, of all parents, it was one
subgroup, the mothers of the autistic children, who reported receiving the most
aggravations. These mothers also reported that despite their emotional proximity to
their husbands, they received inadequate support from them in such areas as caring
for children, disciplining them or spontaneously helping with household chores. In
sum, although supports are as much available to these mothers as to mothers of normal
children, they feel more aggravated by their involvement with these various agents
because of their child's special symptoms and daily needs. Furthermore, the present
findings suggest that stress is related to supports in systematic ways for parents of
these severely affected children, such that the greater the degree of support the lower
their stress.
In conclusion, the diagnostic checklist employed for rating symptoms in tandem
 Symptom severity and parental stress in autism 469

with stress showed a distinct promise for helping us understand perception of symptoms
and the impact of each of the symptoms on the parents. If, for example, a parent
rating the symptoms of a nonverbal 4-yr-old feels that the child's lack of communication
skills does not really merit a high rating, the clinician could gear his/her feedback
to include a clarification of this point and to discuss how input in communication
may be helpful to the child. In the area of stress, knowing that a parent gives high
stress scores to only some symptoms may help to understand how the parent is affected,
and may also provide useful guidelines to intervention. In a more genereJ way, the
present findings also support the intuitive notion that self-abusive and hyperirritable
children are more stressful to their parents. Special efforts need therefore to be made
to help parents of these subgroups to manage these problems through behavioural
or pharmacological interventions or both. Finally, there are parents who give high
scores on symptom presence but low scores on how stressed they are by that symptom,
explaining that they have come to cope with it. This again can help the clinician gauge
parental coping styles and use this information to assist in counselling on other issues
which continue to be problematic for that parent. Thus, knowledge of parental
awareness of symptoms and symptom-related stress can help improve recommendations
to the families.

Summary
This study attempted to clarify how mothers and fathers of autistic children perceived
their child's symptoms and how stressed they felt as a result. For both symptom and
stress perception, the effect of 13 child and parent characteristics, which intuitively
and clinically appear to moderate stress, was examined. Symptom perception was
influenced by the child's age, with younger children seen as less symptomatic by parents
compared to clinicians. There was a high degree of interparental agreement on
symptom severity, with poverty in human communication, uneveness in cognitive
ability and impairment in human relations being given the highest scores. Of the
moderating variables, lower-functioning, nonverbal, odd-looking, self-abusive,
seizuring and hyperirritable children were preceived as more severely autistic. Turning
to stress, mothers' and fathers' stress due to the child's symptoms were comparable.
However, while best stress predictor for fathers was self-abusive behaviour, for mothers
hyperirritability and older age were also included as best predictors. Finally, when
supports and aggravations were examined, mothers of autistic children reported more
aggravations than either their spouses or parents of matched normal children for whom
data were available. The clinical implications of these findings are addressed.
Acknowledgements—This research was supported in part by a grant from the Ontario Mental Health
Foundation #899/1982 in conjunction with the Provincial Lottery Funds.
Special thanks to the participating parents for their candour, cooperation and in some instances
enthusiasm for the project.

References
American Psychiatric Association (1980). Diagnostic and statistical manual of menial disorders (3rd edn).
Washington, DC; Author.
470 M. Mary Konstantareas and Soula Homatidis

Ando, H., Yoshimura, I. & Wakabayashi, S. (1980). Effects of age on adaptive behaviour levels and
academic skill levels in autistic and mentally retarded children. Joumal of Autism and Developmental
Disorders, 10, 173-184.
Arndt, E., Munro, I., Lefebvre, A. & Travis, F. (in press). Fact and fantasy: psychosocial consequences
of facial surgery in 23 Down syndrome children. British Joumal of Plastic Surgery.
Bebko, J. M., Konstantareas, M. M. & Springer, J. (1987). Parent and professional evaluations of
family stress associated with characteristics of autism. Joumal of Autism and Developmental Disorders^
17, 565-576.
Blishen, B. R. & McRoberts, H. A. (1976). A revised socioeconomic index of occupations in Canada.
Canadian Review of Sociology and Anthropology, 13, 71-79.
Bristol, M. M. (1979). Maternal coping with autistic children: the effect of child characteristics and
interpersonad support. Unpublished doctoral dissertation, University of North Carolina at Chapel
Hill.
Bristol, M. M. & Schopler, E. (1983). Stress and coping in families of autistic adolescents. In E. Schopler
& G. B. Mesibov (Eds), Autism in adolescents and adults (pp. 251-278). New York: Plenum.
DeMyer, M. K. (1979). Parents and children in autism. Toronto: John Wiley.
DeMyer, M. K. & Goldberg, P. (1983). Family needs ofthe autistic adolescent. In E. Schopler &
G. B. Mesibov (Eds), Autism in adolescents and adults (pp. 225-250). New York: Plenum.
Holroyd, J., Brown, N., Wilder, L. & Simmons, J. Q. (1975). Stress in families of institutionalized
and noninstitutionalized autistic children. Joumal of Community Psychology, 2, 92-94.
Holroyd, J. & McArthur, D. (1976). Mental retardation and stress on the parents: a contrast between
Down's syndrome and childhood autism. American Journal of Mental Deficiency, 80, 431-436.
Kaslow, F. W. & Cooper, B. (1978). Family therapy with the learning disabled child and his/her family.
Joumal of Marriage and Family Counseling, 4, 41-49.
Konstantareas, M. M. (1985). Stress and coping for parents. Paper presented at the National Conference
on Autism, Winnipeg, Manitoba.
Konstantareas, M. M. (1987). Autistic children exposed to simultaneous communication training: a
follow-up. Joumal of Autism and Developmental Disorders, 17, 115-131.
Konstantareas, M. M. & Homatidis, S. (1988). Stress and differential parentjil involvement in families
of autistic and learning disabled children. In E. Hibbs (Ed.), Children andfamilies: Studies in prevention
and intervention (pp. 321-336). New York: International Universities Press.
Konstantareas, M. M. & Macklin, B. (1982). Manual for rating items on the Classification of Autism
Rating Scale. Unpublished manuscript.
Leiter, R. (1969). The Leiter International Performance Scale. Chicago: Stoelting.
Mack, J. E. & Webster, C. D. (1980). "The runaround": how parents view the professional's view
of their autistic child. In C. D. Webster, M. M. Konstanteareas, J. Oxman & J. E. Mack (Eds),
Autism: New directions in research and education (pp. 41-45). New York: Pergamon.
Marcus, L. M. (1977). Patterns of coping in families of psychotic children. American Journal of
Orthopsychiatry, 47, 388-399.
Mischel, W. (1970). Sex-typing and socialization. In P. H. Mussen (Ed.), Carmichael's manual of child
psychology (3rd edn) (pp. 3-72). New York: John Wiley.
Parks, S. L. (1983). The assessment of autistic children: a selective review of available instruments.
Joumal of Autism and Developmental Disorders, 13, 255-267.
Patterson, G. R. (1980). Mothers: the unacknowledged victims. Monographs of the Society for Research
in Child Development, 45 (Serial No. 186).
Ritvo, E. R. & Freeman, B. J. (1978). National Society for Autistic Children defmition of autism.
Journal of Autism and Developmental Disorders, 8, 162-167.
Rutter, M. (1978). Diagnosis and definition of childhood autism. Joumal of Autism and Developmental
Disorders, 8, 139-161.
Schopler, E., Reichler, R. J., DeVellis, R. F. & Daly, K. (1980). Toward objective classification of
childhood autism: Childhood Autism Rating Scale (CARS). Joumal of Autism and Developmental
Disorders, 10, 91-103.
Shah, A. & Holmes, N. (1985). Brief report: The use ofthe Leiter International Performance Scale
with autistic children. Journal of Autism and Developmental Disorders, 15, 195-203.