Vlaamse Vereniging Autisme (Belgium)
Raising a child with autism is not so easy. As a parent one is not born with the knowledge of raising a child that just does not respond to normal and common parenting. Where for most parents spontaneous parenting fits the normal educational needs of their child, parents of a child with autism have to become special parents. Their child has special needs. Those special needs cause a lot of problems. And problems mean stress.
It is a common saying that parents of a child with autism experience a lot of stress. But do they have more stress? Is their stress a specific one? Is stress necessarily a bad thing, a thing to avoid at all price? And how does it come that some families get into a more or less permanent crisis and that other families seem to cope well?
Stress is a normal human condition. Basically it's an imbalance between the bearing power of a person (or a family) and the stressors.
The stressors in a family with a PDD-child.
In a family with a child with autism, that child is the main stressor.
In many studies autism has been compared with other handicaps and disorders in its stressing capacity for families and parents. The results of these studies do not show enough proof for the hypothesis that autism is both more stressing than other handicaps and more specific. In some studies for instance, autism shows to elicit a very specific stress-pattern in families (Bristol & Schopler, 1983; Bristol, 1984; Peeters, 1986), but when autism is compared with another disorder, f.i. ADHD, that shares with autism some common characteristics, such as invisibility of the handicap, then autism does not differ in stress-pattern (Akerley, 1984; Morgan, 1988; Csincsak, 1991).
What are the most stressing factors in autism?
First of all the chronicity of the handicap. Autism is a lifelong condition, and although many children do make some significant progress if their educational needs are appropriately met, autism cannot yet be 'cured'. So parents see themselves faced with a lifelong problem.
But most of all, it is the ambiguity of the handicap that stresses the parents most. Autism is a puzzlelike condition and it causes a lot of perplexity in families. How can one cope well, if the stressor cannot be identified enough to come up with the appropriate coping strategies?
If children with autism are compared with each other, then research shows that also some other factors play an important role in affecting the parents: the age of the child (Bristol, 1980; Bristol, 1984; Bristol, 1987; Bristol & Schopler, 1983; Cutier & Kozloff, 1987), the severity of the handicap (Freeman et al., 1991), behavioral problems (Noh et al., 1989), the sex of the child (Bristol, 1987).
It seems that especially parents of a so called 'high functioning' child are prone to higher levels of stress. This confirms the hypothesis of the ambiguity as the main stressor in autism. High functioning children or children that are active but odd do not meet the traditional picture of a handicapped child. Many of their behaviors seem normal or approach normality, but they aren't normal. This confuses parents and other people involved. It could well be that differences in stressing effects within the autism group are bigger than between autism and other handicaps.
But autism is not the only stressor. Also in families with a child with autism, other things can cause stress: unemployment of one or both of the parents, having to move to another place, .... So, it's wrong to explain the stress of parents exclusively on the presence of the child with autism. Daily hassles (Lazarus, 1984) can be quite stressing as well. What is most stressing for parents is the pile up of stresses. Autism comes on top of that pile of stresses, and it's a heavy top of the pile. It intensifies the daily hassles (Harris, 1988). Autism is the thing that creates a situation where it is just too much....
The bearing power in a family with a PDD-child.
The bearing power of a family is greatly composed by the support parents get. On the other hand, families and parents do have their own resiliency.Support.
In the literature researchers often make the distinction between two kinds of support: the formal support, i.e. the support by professionals and the informal support, i.e. the support from other family members, relatives, neighbours, friends, colleagues at work and so on.
The informal support system.
An important role in the informal support system is played by the marital relationship. It's quite obvious that single parents experience more stress than couples. But having a partner is not enough to counter the stressors. Research shows that the quality of the marital relationship is essential in reducing stress. More help from the partner does not necessarily reduce the stress of the mother. What is important is the so called goodness of fit. If the father does those things that the mother expects him to do, then she will feel supported by her husband.
That goodness of fit is also essential in the informal support by relatives, neighbours and friends. They can be supportive, but if they offer the wrong kind of help, they are rather stressing... (Bristol & Schopler, 1983; Van Berckeiaer, 1980).
The formal support system.
The same counts for the formal support. Research has shown that professionals can sometimes be a source of stress for parents, rather than a source of support. Especially in the case of autism, professionals - because of a lack of knowledge about autism - criticize parents or even blame them for the problems of their child. Professionals only support the parents if they show understanding (Bristol & Schopler, 1983; Shapiro, 1989; Perry, 1990), if they give the parents practical, pedagogical and emotional support that strengthens the parents bearing power (Noh et al., 1989). Also, some training programs for parents can be so demanding that they mean another source of stress for the parents (Cantweil & Baker, 1984). What seems to help many parents is "respite care" (Tavormina et al., 1973). This gives parents the opportunity to 'reload their batteries'.
Based on research and clinical experience we think that support should be regarded as information. Having the knowledge that appropriate support is available is more important than the objective amount of support (Cobb, 1976; Bristol, 1987; Gill & Harris, 1991). The knowledge that support is available if needed, creates a feeling of security, even if one doesn't use that support.
Parents of a PDD-child should not be regarded as a passive recipient of support. Support is not only something that is 'given', it is a thing that must be 'taken' as well. Support is partially the effect of a search for support. Parents who actively seek for support do get more support than parents who wait until somebody will come out to help (Conn & Peterson, 1989; Baartman, 1991).
Resiliency.
Resiliency refers to the 'strength' parents and families have to face stressors. Important strengthening variables are finances, physical health of the parents, intelligence, the family coherence. These variables are however very difficult to change and they often constitute a limit for family intervention programmes such as hometraining.
The personal resiliency of a parents is the result of many personality characteristics:
Many of these 'personality characteristics' involve thoughts, and they can - at least partially - be influenced through professional help.
Coping strategies.
When faced with stressors people do not just sit there and look at the stressing situation. They try to overcome the stress and tackle the problems. They try to survive and reach a new balance. This is called coping.
Coping refers to the fact that people use the support, the strengths and resiliency available to reduce the stress.
There are different forms of coping.
* Instrumental coping refers to strategies and actions that involve trials to change the situation. Basically this kind of coping involves two strategies: fight of flight. Escaping from the stressing situation changes that situation and reduces the stress. Although at the end, actively changing the situation (fighting) is more efficient, a flight can sometimes temporarily be quite effective. Parents of a PDD-child should get the opportunity to escape from time to time ('parent holiday').
* Palliative coping involves strategies that do not change the situation, but that help to accept and bear the situation (f.i. taking tranquillizers to overcome a period of extreme anxiety). These strategies do not tackle the causes of the stress, but they can (temporarily) create an atmosphere that prepares for more active, instrumental coping.
* Cognitive neutralizing refers to 'changing your mind about the situation'. Taking an alternative perspective can shed a new light, can lead to new, motivating and energizing thoughts and thus reduce the stress experienced before the 'reframing'. If parents start believe that although autism cannot be cured, their child can still make a lot of progress, this creates an atmosphere where parents start looking for the interventions that help their child to improve.
No specific coping strategy is in general more effective than another one. The effect of a coping strategy is situation and time dependent. Professionals should therefore be very careful with general advices, such as "if you start with specific teaching activities for your child, things will get better" or "try to look at it in a more positive way".
Moreover, the effect of coping strategies is depending on the 'estimated' effect (Lazarus, 1977; Boss, 1987). Just as support, coping is a subjective variable: it's what people think that is helpful, that will help. If they are not convinced of the stress reducing effect of a certain strategy, they will not use it (appropriately) and it will not work. Again, what people 'think' is quite central...
All the variables mentioned up till now, can be combined in a stress model, that is referred to in the literature as the ABCX-model. Originally developed by Hill (1949) and adapted by Mc Cubbin & Patterson (1 983), this model functions as a heuristic model for both research and interventions. It is relevant as a diagnostic tool (Perry, 1990), it's interactional and dynamical, and since it incorporates also environmental variables and 'decision taking', it can be considered as a eco-cybernetical stressmodel.
The central role of cognitions in the stressprocess.
Research has abundantly shown that 'thoughts' play a crucial role in the process of stress: support should be regarded as information, the effect of coping strategies depends on the estimated effect, resiliency involves a lot of beliefs a.s.o. Stress is 'in the head' more than it is an objective variable. In the ABCX-model, the 'C'-factor refers to those thoughts or cognitions.
Although in many studies researchers point out the importance of the 'belief-system', many cognitions have yet not been studied.
Research and practice in autism (and the effects on parents) could benefit from other research areas, such as cognitive psychology, stress management theories, motivational psychology etc.
It's impossible here to present an exhaustive and state of the art overview of all the relevant cognitive variables. We will just mention some intriguing variables, based on clinical experiences. These variables have yet not been studied well enough to reveal their role in the stress process in families with a PDD-child, and this a challenge for future research:
Attributions.
The way people explain their problems influences their motivation to overcome their problems. The explanation of the problems is called an attribution. People can blame themselves for their problems or mistakes (internal locus of control), or they can put the cause outside of them (external locus of control). Attributions do not only vary according to the locus of control, but also depending on the stability and globality of the perceived cause of the problems.
The relationship between attributions and stresslevels has not yet been well documented in the case of autism. Locus of control seems to correlate with stresslevels (Friedrich, Cohen & Wiliturner, 1988) and coping (Bristol, 1984; Bristol, 1987).
In research on families with a child with behavioral problems parents tended to attribute their failures internally ('I did not perform well') but their successes externally ('My child was in a good mood'). In the Netherlands the role of attributions in educational problems has been documented by Weis & Robbroeckx (199l).
Attributions are especially important when the problems don't have a clear, easy to detect and well known cause. This is the case in autism. Although it is generally accepted that the problems with / of the child are the result of a biological cause, this does not help the parents always in their day to day taxation. Although they know about the biological etiology, when there child does not respond to their communication, they still can think that it's because they do not perform very well. Attributions are especially important in a problematic situation that involves ambiguity. They are well connected to the theme of 'guilt'. Many parents of a child with autism are blamed for their problems, or they blame themselves. Attributions play a central role in the process of blaming and scapegoating.
Attributions also influence the expectations of the parents. According to their attributions, parents expect different things to help them to overcome or solve the problems. If a parent shows an external locus of control ('The problems have nothing to do with me, it's my child who is so extremely difficult'), then advises concerning an adaptation of the behavior management techniques by the parents won't help much. The parent expects changes in the behavior of his child, not in his own behavior. That parent will say: '1 don't have to be treated, he's the one who needs treatment'.
Professionals who want to help parents or who organize parent trainings should be well aware of the attributions parents make. A good assessment of attributions is necessary. Weis & Robbroeckx developed a questionnaire for parents that assesses a.o. attributions: De Nijmeegse Vragenlijst voor de Opvoedingssituatie (N. V. O. S.).
Finally, it's quite obvious that attributions have their effect on the self-esteem of the parent. If a parent blames himself for the daily problems, then that parent will lack the emotional strength to start changing the situation. Attributions are connected to hopelessness and 'learned helplessness' (Seligman, 1991). They influence a person's attitude towards problemsolving: optimism or pessimism. Learned helplessness ('whatever I do, it has no effect...') creates the condition for a burn-out (Sullivan, 1979).
Illusions.
If a person has illusions, it means that that person does not perceive reality as it is. It is said that, in order to learn to accept the handicap of the child, parents should face reality as it is and avoid all illusions about the handicap of their child (f.i. 'he's quite intelligent' or 'she'll outgrow her autism').
This is too black and white. Without the illusion of Daedalus and Icaros, we wouldn't be flying in airplanes now. It's the illusion (at that time) that the world was round that led Columbus to the discovery of America.
In the cognitive adaptation to the stressor illusions can play a positive role in three ways.
First of all, in order to limit the quantity of 'bad news' to assimilate, parents can for a while underestimate the seriousness of the problem autism ('he will be able to overcome his problems and live a normal life as an adult...'). The pill becomes less bitter and is more easy to swallow, if one has some illusions about the real impact of the disorder.
Secondly, illusions can help to create or maintain a feeling of control. The thought 'it cannot be that bad, I'11 be able to handle it', although not completely in accordance with reality, can enhance a parent's motivation to cope with the problems.
Finally, through illusions a parent can keep his-or her self-esteem positive. This can avoid the problem of learned helplessness. Illusions that help towards a positive self-esteem often are the result of a biased social comparison (or affiliation) (Festinger, 1954; Festinger & Schachter; 1959). People confronted with a handicap or disease often perceive quite selectively fellow-sufferers: they tend to make downward comparisons. They only compare themselves with those people who are "worse off", so that they can say of themselves: 'in our case, it is not so bad'. Although this is, objectively, a distorted view of reality, it helps them to maintain a rather positive self-esteem.
The most common seen illusion, when it concerns coming to grip with the handicap of a child, is denial. Parents, certainly just before of just after the diagnosis of their child's handicap, deny the presence of that handicap.
The risk for denial is especially big when it concerns a threat that is ambiguous. And... autism is a prototype of an ambiguous threat. It is not so easy to outline the autistic problem: it is invisible (there is no clear biological marker as for Down-syndrome), people with autism are confusing in their behavioral and skills pattern (the uneven, dysharmonic profile of functioning), their behavior often is situation-cued and so they can show a certain behavior in one situation, but not in another... Ambiguity creates the opportunity for denial.
It is remarkable that there is often a double denial. Parents have to cope with two things in autism: first of all the autism itself, but - in many cases - also the mental retardation of the child. It happens often that parents do accept the autism of their child, but that they strongly deny the accompanying mental retardation ('He has autism, but happily he is high functioning...'). Autism, because of its ambiguity, leaves more doors open: a prognosis is more difficult to make, there are a lot of miracle therapies, in the future 'they will find medication that solves the problem' and so on. Mental retardation is better known by parents, and they know that mental retardation is life long, there are no miracle cures, medication does not help... Mental retardation is a more absolute thing.
Professionals should be careful handling the illusions of parents.
First of all, illusions can be temporarily very functional. It avoids that the confrontation with the handicap of their child is so overwhelming that it paralizes parents. Coming even with the fact that your child has a severe, lifelong handicap, does not happen from one day to another. It takes time, and this process has to take place piece by piece. Illusions enable a piecemeal processing of bad news, and can therefore be very functional. Trying to confront parents, in order to take away their illusions, can be quite disruptive for the process of grieving and can be therefore very counterproductive.
Of course, on a long term, denial increases the stress rather than it reduces it, and therefore it is a priority for professionals to teach the parents to perceive the handicap of their child in a realistic way. Giving clear and understandable information about the handicap and its implications should start right after the diagnosis, but the kind and amount of information that is given should take into account the emotional receptiveness of the parents. A professional can confront a parent, but he cannot expect that the parent immediately will take the alternative perspective given. Research shows that disconfirmation of illusions takes time, and that illusions can be stronger than reality (Hayes & Roth, 1981).
Primary and secondary appraisal.
Primary and secondary appraisal (Lazarus, 1975) refer to the 'meaning' that a person gives to a certain situation.
The primary appraisal contains the taxation of the situation made by the parents. Professionals helping parents should be aware of what autism means for the parents: is it a threat? a disaster? a challenge? Depending on the meaning that autism gets in a parent's life, the parent will be more or less receptive for certain interventions. A parent who thinks of the handicap of his child as a challenge for his life will be more open for changes in his behavior than a parent who considers autism as a disaster that cannot be overcome.
Research has shown that if parents can give (whatever) meaning to the fact that they have a handicapped child, there are lower levels of depression (Shapiro, 1989). Most depressing are the problems that are meaningless.
The process of giving meaning to the situation is influenced by a person's values system. Religion sometimes constitutes the basic of such a values system. Parents who can give meaning to autism, based on their religion values system, often feel supported by their religion. F.i. when I was in Kuwait, I discovered that some mothers there were not very stressed by the fact that they had a handicapped child. In the Islam (their religion) it meant that they could deserve their heaven by taking care for a handicapped child. For the fathers it was quite different. In the Islamic culture a fathers status in society depends a.o. on the fact that he has sons who are successful in life. Autism means a serious threat for that status.
The secondary appraisal refers to the already mentioned attributions. There is for instance a correlation between the locus of control and the inclination to seek information (Leenders, 1983). Gille & Harris (1 991) also found a correlation between hardiness and social support.
Autism and cognitive dissonance.
People tend to seek consistency in their cognitions (homeostasis). If they are confronted with dissonant impressions, they will try to solve that cognitive dissonance (Festinger).
This is quite central in the effect of autism on the parents. The most crucial and central variable in autism is the ambiguity. Autism is a puzzle (many Autism Societies have chosen a puzzle for their logo, and that's no coincidence).
Because autism is a very ambiguous disorder, it creates constantly cognitive dissonance. Parents of a PDD-child have more difficulties than parents of otherwise handicapped children to reach consistency and homeostasis in their cognitions about what's wrong with their child and what to do about it. Parents of a PDD-child often are confused, they have difficulties to understand the problem of their child: it is so strange, people who feel as 'anthropologists on Mars' (Grandin, 1995), people whose functioning and performing is so dysharmonic. Autism causes perplexity.
Autism interferes with the normal understanding of the stressing situation, autism interferes with a normal, spontaneous taxation of the situation (Perry, 1990) and makes it therefore difficult to find the appropriate coping strategies. And it's a vicious circle, the ambiguity creates higher levels of stress, and higher stresslevels make it hard to see problems in a realistic way (Factor et al., 1990).
The ambiguity is the most intense in the cases of mild autism (Schopler & Reichler, 1972) and the autism-like conditions (Asperger, PDD-NOS) (De Vriendt, 1990).
In hometraining we see that the biggest problem for parents is to estimate what their child is able to. And this is not only a problem for parents, professionals are equally prone to this kind of pitfalls. Children with autism are constantly overestimated and underestimated. And these biased estimations cause new, nonspecific problems, especially behavior problems. These secondary problems make the situation even more confusing ('is he not able to do it, or is he not willing to do it?'). Both parents and child get more and more perplexed.
lmplications for family oriented interventions.
In helping parents to cope (better) with the autism of their child, the ambiguity is the first and main problem to be handled. Decreasing the ambiguity of the disorder prevents distress. Therefore, giving accurate information about the handicap and its implications is a priority. Well elaborated assessment procedures that result in a informative, understandable and clear individualized profile of functioning of the child are a prerequisite for further interventions. Practical and pedagogical advises to parents must be based on a realistic understanding of the problems. Parents will continue to overestimate or underestimate the problems of their child without a good diagnosis and assessment. Appropriate assessment and diagnosis can help solve the problems that come from denial, cognitive dissonance and perplexity.
Secondly, parents have to be informed about effective coping strategies. Often, they do not cope well because they are unaware of successful coping strategies. They can learn from the successes of other parents. Bringing parents in contact with each other creates an opportunity, not only for downward comparisons, but also for an exchange of practical solutions for problems. Contact with other parents can be very helpful and inspiring. Other parents can give emotional support, they can enhance the self-esteem and they can give practical information and advice.
Parents have to be well informed about possible support systems: respite care, recreational activities for parents, palliative support intervention, hometraining, and first of all: appropriate education for their child.
Professionals can also help parents in cognitive reframing. Presenting alternative viewpoints, reattributional training (f.i. taking away the feelings of guilt), enhancing the self-esteem of the parents, creating realistic expectations are cornerstones of this cognitive reframing. Affiliation and humor can be quite effective in this matter and are generally underestimated in their positive effects. Teaching parents to laugh again is a good, not enough used, medication.
Professionals can help parents to establish a new belief system or to give an alternative meaning to the situation. Autism does not have to be a disaster, it can be a challenge...
Appropriate education and respite care indirectly help parents, but their effect cannot be underestimated. More than other parents, parents of a PDD-child need now and then a 'parent holiday': a time off, without their child. So that they can reload their batteries. Good respite care can make this possible.
If a child receives the right education, it will improve. If a child learns at school to communicate with an alternative communication system, and if the teacher helps to transfer the skills acquired at school to the home situation, then this also has an effect on the stress of parents. Once parents better understand what their child is communicating, once they themselves can make things clear to their child, then the stressing effects of autism are reduced.
Finally, stress reduction for parents of a PDD-child is also a political challenge. The ABCX-model clearly shows the influence of environmental variables on the stresslevels of parents. Parents should be able to consult a well organized support system, not only for informal support (relatives, friends,...) but also for formal support. In many European countries, specialized institutions have been created for education and housing of children and adults with autism, but only few countries have a well organized support system for the parents. Hometraining is still quite exceptional in Europe (only in the Netherlands and Belgium, and some isolated initiatives in other countries).
Parents feel responsible for the education of their child, and they want to be in charge as long as possible. It happens too often that parents, because there are no organisations that help them to fulfil their role as a parent, have to give up and the child then has to be institutionalized. This is more expensive than hometraining. Many parents of a PDD-child succeed, with help and support, to survive and to become the special parent their child needs. It is the responsibility of the authorities to create the opportunities for parents to be a special parent as independent as possible. Inclusion and integration of people with autism starts in the family, not in expensive projects at school or in the institution.
Conclusion.
Cognitions influence educational behavior (Robijns et al., 1990; Miller, 1988; Goodnow, 1988; Siebenheller, 1988) and the emotions of parents of a handicapped child (Gresnigt & Gresnigt, 1975; Weiner, 1986). Cognitions are correlated with stress-outcomes and they even seem to influence physiological immunity systems (Levine, 1983; Seligman, 1991). In the research concerning the effects of autism on the family, studies have shown that the thoughts of parents play an important role in the stress process.
The ambiguity of autism seems to be a very crucial and central variable in the stress process in families with a PDD-child. It creates the vicious circle of perplexity, and it is that perplexity that, interferes with spontaneous recovery and successful coping strategies.
The area of the thoughts of parents of a handicapped child and their effects on coping and survival is still largely undiscovered. It is a challenge for future research. Researchers can inspire themselves on well established theories and models in cognitive psychology, such as the expectancy-value theory, performance-motivation theory, failure avoidance behavior theory, cognitive-dynamical motivation theory, cybernetical behavior models, selfmodulating feedback models and many others.
To conclude with: more and more studies show the importance of cognitions in stress. Parents act the way they feel, and they feel the way they think (Weiner; 1986). But one can never forget: 'Le coeur a ses raisons que la raison ne connaît pas.' (The heart has its reasons that the mind does not know).
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