INTRODUCTION
From the clinical standpoint, one of the chief characteristics of the autistic syndrome is its great heterogeneity - the profound differences existing between individuals in the affected population. This important variability is conspicuous in the basic symptoms of the disorder, in the associated symptoms and in the intelligence quotient (I.Q.). It is clear that not all autistics show the same degree of disturbance in their interpersonal relations or in communication, and that not all of them show the same desire for invariability or the same degree of limitation in their interests and activities. We also know that, although in autism certain secondary symptoms are far more common than others from an overall perspective, differences between individuals in terms of the presence or absence of symptoms and of their seriousness are highly significant. As for cognitive development, it has long been demonstrated by epidemiological studies that, contrary to opinions held in earlier periods, the majority of people with autism present an associated mental deficiency of varying degree and that individuals vvith normal I.Q.s are a minority in the affected population. It has also been found that the variation in I.Q. among the general population with autism is considerable (Gillberg, 1984; Freeman et al., 1991)
Given this extreme clinical heterogeneity,
it is obvious that whenever people with autism are discussed,
we must first define certain parameters of the sample, so that
the type of subjects we are referring to is always unambiguous.
For these reasons any excessive generalization about autism is
simply not productive.
Severely Affected Autistic People
Within the general population with autism, the term severely affected autistics refers to the subgroup presenting a severe pathology and an associated mental deficiency vvhich is also severe or profound. Epidemiological studies have demonstrated that this subgroup encompasses the majority among the general population of autistics (Gillberg, 1984; Fombonne and Mazaubrun, 1992), as well as the fact that, due to the correlation of the level of mental deficiency with the severity of the symptomatology (Wing and Attwood, 1987), these individuals present more serious behaviour disorders, such as episodes of agitation, aggressiveness and destructiveness.
We believe that the specification
of this subgroup in the general population with autism is useful
from many standpoints, but at the moment we are concerned with
two aspects in particular: the consequences for the family and
the effects of the treatment regimens.
Consequences for the Family
Various studies on the consequences of autism for the families involved have demonstrated that one of the most prevalent effects of having a child with autism is the presence of chronic stress in the parents, arising from, among other factors, the difficulties entailed by day-to-day cohabitation with a person presenting both a serious cognitive deficit (in most cases) and an extensive and profound behaviour disorder (Bebko et al., 1992; Bristol, 1979, 1987; Holroyd, 1976; Koegel et al., 1992; Konstantareas and Homatidis, 1989).
One of the objectives of the research conducted on the consequences for the parents of a child with autism is to identify those factors - in the afflicted child, in the parents, and in the social environment - which aggravate and alleviate the stress suffered by the parents. In other words, the aim is to determine, respectively, the risk factors and the protection factors with regard to family stress.
In a recent study conducted in Catalunya, Spain (Cuxart 1994) based on a sample of thirty-five families with autistic children - the majority of them severely affected (mean I.Q. <30) and ranging in age from 6 to 22 - the results revealed a correlation which a priori appears logical and which is consistent with the findings of other investigations (Koegel 1992): the greater the mental deficiency of the autistic child, the higher the parents' level of stress, which was assessed in our study with the QRS (Holroyd 1976).. In a similar vein, the findings also demonstrated, in concurrence with those of other studies (Bristol 1979; Bebko et al. 1987), that the more severe the pathology of the affected child, the higher the parents' level of stress.
An immediate conclusion to be drawn from these data is that, generally speaking, the parents of severely affected autistic children will present higher levels of stress than those of parents with less severely affected autistic children.
This positive correlation of the degree of mental deficiency and level of symptomatology of autistic individuals with the levell of family stress should be reflected directly in the aims of therapy programmes designed for people with autism, the rationale being that whatever reduces the effects of the associated mental deficiency - in other words, the handicaps - and the psychopathology of the subjects with autism will also ameliorate family stress. And we might add that this reduction will also indirectly benefit the autistic subject, since from the standpoint of interaction, a decrease in the disruption of the family dynamic as a result of lower stress levels must necessarily have beneficial therapeutic consequences for the autistic child.
In the study under discussion it
was also found that informal social support (the term informal
social support refers to the help provided by people close
to the family, such as relatives, friends and neighbours, with
no contractual agreement between the two parties) is positively
correlated with lower levels of family stress (in two of the three
domains of the QRS). Thus we can affirm that this type of support
constitutes a factor that protects parents from stress (see the
graphics 1 and 2).
INFORMAL SUPPORT
MOTHERS
Graphic 1
INFORMAL SUPPORT
FATHERS
Graphic 2
These data confirm the findings of earlier studies (Bristol 1987; Konstantareas and Homatidis 1989) and indicate that the more extensive the informal support system available to the parents of autistic children, the lower the level of stress presented by the parents.
With regard to the other type of
social support, that provided by services (or by individuals,
but in a structured way), which is known as formal or instrumental
support, the findings of this study are more complex. In this
vein, we should first point out that, because all the subjects
with autism received, as a minimum, treatment in a day centre,
to distinguish the degrees of formal support given the
families, they were divided into two groups. The first group
consists of families whose autistic child was cared for only in
a day centre so that each evening he or she returned to the family
home (n=23), vvhich we called the non-continuous treatment
group (NT). The other group contained those families whose
autistic child not only attended the day centre, but was also
treated in residential services (for a given number of days during
the week), such that the child alternated between continuous twenty-four-hour-a-day
treatment and periods spent at home with the family (n=12), which
we called the mixed treatment group (MT). Our findings
show that the overall stress levels of the mothers in the MT group
were not significantly different from those of the mothers in
the NT group (see the graphic 3).
FORMAL SUPPORT
MOTHERS
Graphic 3
As for the fathers, on the other
hand, those who belonged to the MT group showed overall stress
levels that were significantly higher that those of the fathers
in the other group (see the graphic 4).
FORMAL SUPPORT
FATHERS
Graphic 4
Viewed in this way and based on these data, we might initially say that the MT constitutes a risk factor for fathers (but not for mothers) with autistic children. However, if we go on to analyze certain characteristics of the subjects with autism from both groups of families, we can draw more subtle and very different conclusions.
If we compare, for example, the mean
I.Q. of the subjects on an MT regimen with that of the subjects
receiving NT, we see that the mean I.Q. of the first group was
significantly lower (16.8 and 34.7 respectively). Apart from
the fact that these data concur with those found in the study
conducted by Factor et al. (1990), showing that the families with
the most severely affected autistic children are more likely to
provide them with an MT regimen (continuous regimen + family home);
the fact that, as a group, the autistics on an MT regimen show
an associated mental deficiency which is far more serious than
in the case of autistics treated on an NT regimen leads one to
expect - in view the point made earlier: the more deficient the
autistic child, the greater the stress of the mother and the father
- that, generally, both the mothers and the fathers of autistic
children on an MT regimen would show far more stress than the
mothers and the fathers of autistic children on an NT regimen.
But, as we have seen, the data from our study show that this
was true only of the fathers. The mothers from both groups show
similar levels of stress. Therefore, we can say that the MT regimen
of the autistic child constitutes a stress-protection factor for
the mother because, if such were not the case, the mothers from
the group with a child on an MT regimen would have shown levels
of stress that were far higher than those of the mothers in the
NT group (as was true of the fathers). The question we must tackle
now is why the MT regimen of the autistic child does not constitute
a stress-protection factor for the fathers as well. And all we
can say is that our study did not provide us with any data indicating
a possible cause of this apparently contradictory phenomenon.
It may be the case that in the family household the mother devotes
greater effort to the care of the autistic child than the father
does. And therefore, when the autistic child is receiving continuous
treatment for several days, the mother is relieved of her heavy
burden. The father, on the other hand, is already less involved
in caring for the autistic child, and so the fact that he or she
is away from home for several days does not imply a significant
change in the effort he devotes to caring for the affected child.
But that would mean that a direct correlation exists between
the amount of effort devoted to caring for the child with autism
and the level of stress. In our study this correlation was not
found. The mothers, 26 of whom devoted far more effort from the
quantitative standpoint to the care of their autistic child than
did the fathers, on the whole showed stress levels that were
very similar to those of the fathers (see the graphic 5).
LEVEL OF STRESS
Graphic 5
Behaviour Problems and Treatment
Regimens
At the La Garriga Network of Services for Autistic People (Barcelona) we have recently undertaken a study for the purpose of evaluating the relationship between serious behaviour problems and the treatment regimen of the subject.
The general objective of this network
of services is to provide an integral and flexible response to
the problems of severely affected individuals with autism and
other generalized developmental disorders. The network is integral,
in that the facilities are not limited to serving particular needs
or specific age groups, rather the aim is to meet all needs throughout
the entire life cycle; and it is flexible, in that the use of
each of the services by each person always depends upon the special
requirements and characteristics of both the individual and his
family.
The following services are currently provided:
At the present time the network has forty users.
From our point of view, the existance
within the same network of day centres and residences (with the
residence schedule supplementing that of the day centres) made
the La Garriga centres ideal facilities for conducting our study,
since the different direct-care services for autistic individuals
apply the same treatment methodology. This meant that the variable
type of treatment, which was essential in the study we
planned to undertake, would be controlled.
The method we designed for comparing the evolution of certain behavioural symptoms as a function of the treatment regimen was the following. Our aim was to measure the frequency and the intensity or duration of selected pathological behaviours for a period of time during which the subject presenting them was on a non-continuous treatment (NT) regimen (the first stage), as we described earlier. Then the same behaviours would be measured in the same subject during a period in which the treatment regimen was mixed (MT) (the second stage). From this data we would see, for each behaviour evaluated, whether there were any differences between the two measurements and whether they were significant. Such an approach meant that the behaviours selected had to display, in each subject and during the first stage (NT), a certain degree of seriousness so that they would be susceptible to a substantial reduction. For this reason, we eliminate from the study those individuals who displayed the selected behaviours very seldom.
Taking this condition into account, the behaviours we selected at the first stage, to its clinical relevance, were aggressiveness (against self and others) and episodes of agitation. Regarding the former, the number of subjects who presented the symptom during the first stage (NT) were only four (n=4). For the second symptom there were seven (n=7). The mean chronological age of the sample was 17 years and the IQ <30. The behaviours were evaluated using the IDR (the Individual Daily Record) (Rom et al. 1995), a structured record designed by the technical team of the La Garriga Network of Services, which is filled in every day (as indicated by the name) for each of the individuals cared for at the network. This record enabled us to measure the frequency and the intensity (evaluated in terms of the effects of the behaviour) of the aggressions, and the frequency and duration of the episodes of agitation. The two measurements were taken for a period of eight uninterrupted months. During the first four months of the period (the first stage) the subjects were on an NT regimen and during the last four months (the second stage) on an MT regimen (with five days of the week on a continuous regimen and two days spent in the family home).
With respect to aggressiveness, the
findings showed a significant reduction in the frequency (p<0.05)
and in the intensity (p<0.005) between the first stage (NT)
and the second stage (MI) (See the graphic 6).
AGRESSIONS
Graphic 6
As for the episodes of agitation,
a significant reduction in the frequency (p<0.0l) and a non-significant
reduction in duration were found between the first stage (NT)
and the second stage (MT) (see the graphic 7).
AGITATION
Graphic 7
These data seem to indicate -using all the caution required in the assessment of such a small sample - that the mixed treatment regimens (MT) are more effective in alleviating certain serious behaviour disorders than are the non-continuous (NT) treatment regimens. As for the factors that may have some bearing on this matter, first of all we should state that the functional analysis of these behaviours led to the conclusion that they are strongly reinforced by variables in the environment. Therefore, it is reasonable to believe that the continuity of the therapeutic environment afforded by the MT regimens enables a far more effective control of those variables.
Regarding the evaluation of these
results, according to strictly experimental criteria, the progress
achieved must be regarded as modest, since from the wide range
of pathological behaviours presented by severely affected autistics,
we assessed only two (one for each subject). But using clinical
criteria, the results should be viewed as highly positive, for
a significant reduction in serious and disruptive behaviours like
aggressiveness and episodes of agitation always involve a major
improvement in the quality of life of the individual with autism
and of everyone around him or her. Nevertheless, it is clear
that these findings must be replicated by other studies using
larger samples and which include, if possible, more pathological
behaviours.
Conclusions
Based on the findings of the two studies presented, there are reasons to believe that for severely affected autistics the MT regimens are more appropriate than the NTs: firstly, because they seem to be more effective in reducing some serious behaviour problems and secondly, because mixed treatments favour the alleviation of stress in the mothers of autistics, which implies an improvement in the family environment and this has indirect therapeutic benefits for the autistic subjects. As a result the MT regimen is no longer considered to be an emergency measure for those periods when the individual with autism presents a severe aggravation of his pathology. To cope with such situations, emergency units already exist in psychiatric facilities, such as the unit recently established here (Bennito Menni). Nor is such a regimen meant to serve exclusively as a family assistance service. Taking into account the potential benefits for the most severely affected autistics provided by such a treatment regimen, the MT regimen should constitute a natural option for this subgroup of autistics. However, obviously it is not easy for parents to accept the institutionalisation of their child afflicted vvith autism during a certain number of days of the week, even when they are aware that this is for his benefit. For that reason, the families need continual support if they are to take this step without suffering the guilt feelings that arise from the belief, which we consider erroneous, that they are shirking their parental responsibilities.
However, to return to the services per se, it is clear that if a continuous twenty-four-hour-a-day treatment (day centre and residence) is to be effective, a number of necessary conditions must be fulfilled.
1 . High quality services: both day centres and residences.
2. An effective co-ordination between both services.
3. The standardization of the therapy guidelines for both services.
4. A co-ordinated multi-disciplinary team with standardized intervention criteria.
It is clear that if we consider two options for providing continuous treatment: independent day centres and residences versus networks of services that offer both, with the facilities available in the second option it is much easier to fulfil conditions 2, 3 and 4.
Nevertheless, one danger inherent in the networks of services is that they may come to regard themselves as technically self-sufficient and are therefore not very receptive to outside influences. Such a development may cause a downgrade in the quality of the services involved. For that reason, it is advisable that these services remain in regular contact with other professionals, with other direct care services and with research centres, in order to exchange ideas and experiences.
In summation, we believe that networks
of services constitute the ideal solution for the care and treatment
of severely affected autistics because the person with autism
is placed at the centre of an imaginary circle formed by an entire
series of services vvhich answer their needs and those of their
family. And this is in contrast to a situation in which the services
constitute the centre around vvhich the autistic individual and
her family must turn, in attempting to meet their needs.
Bebko, J., Konstanatareas, M. y Springer, J. (1987). Parent and professional evaluations of family stress associated with characteristics of autism. Journal of Autism and Developmental Disorders, 17 (4), 565-577.
Bristol, M. (1979). Maternal coping with autistic children: the effects of chíld characterístícs and interpersonal support. Unpublished doctoral dissertation. University of North Carolina, Chapell Hill, North Carolina.
Bristol, M. (1987). Mothers of children with autism and communication disorders. Successful adaptation and the double ABCX model. Journal of Autísm and Developmental Dísorders, 17 (4), 469-486).
Cuxart, F. (1994). Estrés y psicopatología en padres con hijos autistas. (tesis doctoral). Universitat Autónoma de Barcelona. Servei de Publicacions.
Factor, C., Perry, A. y Freeman, N. (1990). Stress, social support and respite care use in families with autistic children. Journal of Autism and Developmental Disorders, 20 (1), 139-146.
Fombonne, E. y Mazaubrun, C. (1992). Prevalence of infantile autism in four French
regions. Socíal Psychíatry and Psychiatry Epidemíology, 27, 203-210.
Freeman, B.J., Rahbar, B., Ritvo, E., Bice, T., Yokota, A. y Ritvo, R. The stability of cognitive and behavioral parameters in autism: A twelve-year prospective study. Journal of the Amerícan Academy of Chíld and Adolescence Psychíatry, 30 (3) 479-482.
Gillberg, C. (1984). lnfantile autism and other childhood psychoses in a swedish urban region. Epidemiological aspects. Journal of Child Psychology and Psychiatry, 25 (1), 35-43.
Holroyd, J. y McArthur, D. (1976). Mental retardation and stress on the parents: a contrast between Down's Syndrome and Chiidhood Autism. American Journal of Mental Deficiency. 80, 431-436.
Holroyd, J. (1987). Questíonnaire on resources and stress. Clinical Psychology Publishing.
Koegel, R.L., Schreibman, L., Loos, L., Dirlich-Wilhem, H., Duniap. G., Robbins, F.R. y Plienis, A.J. (1 992). Consistent stress profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22 (2), 205-216.
Konstantareas, M.M. y Homatidis, S. (1989). Assessing child symptom severity and stress in parents of autistic children. Journal of Chíld Psychology and Psychíatry, 30 (3), 459-470.
Lord, C. y Schopler, E. (1 984). Stability of assessment results of autistic and nonautistic language-impaired children from preschool years to early school age. Journal of Chíld Psychology and Psychíatry, 30 (4), 575-590.
Rom, J., Cuxart, F. y Folch, J. (1 995). Aportacíons a la comprensíó y el tractament dels.
autistes adults severament afectats. Barcelona. Fundació Privada Congost
Wing, L. y Attvwod, T. (1 987).
Syndromes of Autism and Atypical Development. A Cohen, D. y Donellan,
A. (eds.) Handbook of Autism and Pervasive Developmental Disorders.
Silver Spring. Winston and Sons.