This review concerns, firstly, the development of siblings of children with autism, with the results of a study suggesting that psychosocial and emotional skills are typically enhanced, but the risk of unfavourable impacts becomes greater as the number of demographic disadvantages increases.
The subsequent section refers to evidence for poorer communication skills in such siblings, with possible implications for a broader autistic phenotype.
There follows a study of the impact of inclusion upon classmates, and of the value of peer awareness-raising programmes upon their attitudes and actions.
This links to a study of the effects of awareness raising programmes concerning a range of intellectual disabilities.
The final section describes the parental perspectives concerning the impacts upon the family, positive and negative, of childhood developmental disability.
M.J.Connor October 2007
The Adjustment of Siblings of Children with Autism
Macks and Reeve (2007) begin their paper by describing autism as a severe developmental disorder which can present significant challenges for the family.
It is their view that the presence of a child with any illness, or handicap, or disability may involve some difficult adjustments for the rest of the family, but that the particular nature of the impairments characteristic of autism may put other family members at a high risk of psychological strain.
They suggest that, specifically, it is the level of complexity, the unpredictability, and the inexplicability of autism which underlie the risk of impaired psychological functioning within the family; and long term and converging evidence, such as that of Rodrigue et al (1993), suggests that there is commonly more stress and disruptive effects in families with children who have autism than in families with children who have other disabilities.
Meanwhile, it is reported that the severity of the disability is the factor most related to (poor) sibling adjustment, and the ambiguity of the autistic characteristics which appears most predictive of sibling outcomes.
However, the review of studies completed by Macks and Reeve suggests that findings may generally highlight these potential difficulties, but that findings across studies are inconsistent. Some of the emerging evidence has indicated poorer adjustment, and greater signs of depression or social weaknesses among the siblings of children with autism; other evidence has indicated that the siblings are typically well-adjusted and display positive social skills and self images.
Several areas of stress impacting upon siblings have been identified (by Randall and Parker  for example). These may include :
It may also be the case that the siblings feel some resentment towards the child with autism if the range of family activities is limited because of the time and resources necessarily expended upon that child; and they may become anxious or feel a sensation of shame as a result of the behaviours displayed ... often experiencing some anger because they thought it would not be appropriate to invite friends to their home.
It was Howlin (1988) who highlighted the significance of the considerable amount of parental time and energy required in looking after the child with autism, with the result that many siblings felt that they were not receiving their reasonable share of parental attention; and this might be particularly the case when, as noted by Randall and Parker (opp.cit), the siblings are expected to take on more household responsibilities and to help in caring for their autistic brother or sister.
On the other hand, there is existing evidence that siblings of children with autism are socially competent, confident, and well adjusted.
For example, Kaminsky and Dewey (2002) found that siblings of children with autism were not at inflated risk for adjustment difficulties, nor did they show deficits in social communication. Some studies cited by the present authors even suggest that the siblings of children with autism are better adjusted and have more positive self concepts than siblings of non-disabled children.
(The present writer – MJC – would simply wonder if some of the discrepancies are a function of variation in sampling criteria and procedures, and of the characteristics of the children with autism who feature in the various studies and of the siblings themselves. It is speculated further that early studies may have tended to find greater sibling difficulties given that the concept of autism as a spectrum disorder is a relatively recent one whereas a diagnosis of autism before [say] the early-80s indicated a typically severe level of disability ??)
In any event, a further summary of evidence from existing studies would suggest that psychosocial adjustment in the siblings of children with autism may well be a function of a number of variables, including ....
It is reported, for example, that girls, and siblings from 2-child families, are at a heightened risk for poor adjustment ... possibly because, in larger families, parents are less likely to place onerous household responsibilities on any one individual, and the siblings have one or more typically-developing brothers or sisters with whom they can relate.
However, even here, there are inconsistencies, and it is possible to cite some findings to the effect that family size, birth order, and the gender of the non-disabled sibling(s) are not associated with adjustment levels.
Macks and Reeve offer one possible explanation behind these inconsistencies in terms of variation in the assessment measures, notably whether parent reports or sibling self reports have been used. Parent reports appear to produce information that is differentiable from what emerges from self reports; and, while it has been recognised in principle that research requirements include the gathering of data from multiple informants, this tends not to happen in practice.
Their own research tested the predictions that siblings of children with autism (and siblings of non-disabled children) would score more positively on self concept measures and on behavioural ratings if ....
They were male
They had more than 1 sibling
They came from families with higher than average socioeconomic status
... and in the case of families with a child with autism ...
They were younger than their brother or sister with autism.
A sample of over 50 families were involved, with participants from each family including one parent and one non-disabled sibling (nearest in age to the child with autism) between the ages of 7 and 17. In 2-parent families, the decision about which parent would act as respondent was made by them.
All the children with autism attended day specialist schools.
A control sample of families including children with no developmental disabilities was recruited as a comparison group.
All the children completed the Children’s Depression Inventory and the Piers-Harris Self-Concept Scale, and had the opportunity to add their own comments.
All parents completed the Behaviour Assessment System for Children; and provided personal information (age, gender, family income, etc.).
The outcomes with this current sample of participants demonstrated that the siblings of children with autism appeared to have a higher self concept than comparison siblings. This included a more positive view of their own behaviours, abilities, school achievement, and proneness to anxiety.
In seeking to interpret these findings, Macks and Reeve consider the possibility that the positive self report data reflect the way in which the siblings in the target sample compare themselves with the autistic child. Another possibility is that siblings of children with autism will have acquired a higher degree of maturity than typical peers, perhaps reflected in improved social and scholastic performance, and leading to a generally high self concept.
It should be noted, however, that the scores of the siblings of non-disabled children still fell in the average range suggesting that the observed difference between the group scores was not a matter of a lack of representativeness of the comparison group but of the particularly positive adjustment of the target group.
It was also noteworthy that the behavioural ratings produced by the parents did not produce overall significant differences between the two groups of siblings, but the parents rated siblings of children with autism more poorly on social and emotional adjustment than parents of the comparison children. This highlighted the difference between parental perspectives and the perspectives of the children themselves in the target group.
The authors suggested that the parents in question focus so much upon the child with autism that they lack a full appreciation of the actual social and emotional functioning of the other children. They speculated, too, that parents may project some of their own anxieties onto the children; while assuming that any stress they experience themselves as a result of looking after the child with autism will impact equally upon the siblings.
The existence of this discrepancy is taken as a reinforcement of the existing advice about using multiple sources of information, and avoiding any reliance upon a single source.
With regard to demographic issues, it appears from the current evidence that these matters will impact more upon the siblings of a child with autism. Thus, when there are certain disadvantages operating upon the family and upon the child, such as limited financial resources, or being one of only two siblings, or being older than the child with autism, it becomes more difficult for the sibling to manage both emotionally and psychologically with the situation.
This issue of demographics (and the implied additivity of the factors involved) is held to be one means by which to explain the inconsistent findings among earlier studies ... for example, findings of very positive adjustment among siblings of children with autism may not have allowed for the effects of multiple demographic risk factors.
The authors recognise the
limitations in their own study such as the limited size of the groups, the
exclusion of families where the child with autism is in a residential setting,
and the fact that all the responding
parents proved to be the mothers.
Nevertheless, they feel able to support the reported need for ongoing studies further to examine the issue of further demographic factors ... such as religion, gender of the child with autism, marital status of the parents, etc. ... and to restate the current indication that the presence of a child with autism in a family can enhance the self concept and emotional well-being of other children in that family, but that increasingly negative impacts may be observed as demographic risk factors increase
(perhaps providing some pointers about which families would most benefit from early and supportive intervention).
Development of Younger Siblings of Children with ASD
In some contrast to the above reported conclusions concerning younger siblings of children with autism, the work of Stone et al (2007) does suggest a probability that they will have some disadvantages, compared to control children with no disabled brothers or sisters, in respect of social-communicative or cognitive development.
Their study was a prospective evaluation of the developmental abilities of young children with a sibling diagnosed with ASD, and followed up the reported frequency with which siblings are shown to be at some risk of mild impairments which may be below the threshold for ASD but clearly observable in the domains of language or social interaction.
The study involved samples of young children, aged between 1 and 2 years at the start of the observations. The target sample comprised 64 siblings of children with ASD, and 43 siblings of typically developing children, matched on demographic variables such as mean age, gender, and the total number of siblings. Ongoing assessments were completed through scales of early learning, communication development, sociability, and ratings of autistic symptoms.
The findings were that the siblings of ASD children scored generally more poorly than the comparison group on several measures, notably early learning progress and the presence of autistic symptoms. Lower scores were also seen on measures of social-communication skills.
The authors point out that the group differences were not the result of a small number of particularly low scores in some members of the target group of siblings. Further, parental ratings, obtained through semi-structured interviews, indicated that siblings of ASD children were more likely to display impaired social behaviours before the age of 2 years. It is stressed again that a large proportion of the target children performed more poorly according to the parental ratings; it was not a matter of just a few children having markedly low ratings to skew the overall mean..
Stone et al interpreted their findings by suggesting that impairments associated with having an ASD sibling are relatively common and may be observed in their social and communicative skills such as the development of receptive language and comprehension, joint attention, and use of gesture for communication. The further suggestion was that the findings support the theory of a broad autism phenotype encompassing the siblings, with implications for careful screening of the siblings of children with autism and ASD.
(A commentary on this study by Basco  holds that it is likely that clinical services are already attuned to the possible needs of siblings of children with autism and ASD although the current findings reinforce the logic of close monitoring.
He poses the further questions that the current data do not answer.
Are the impairments noted among some or many siblings of children with ASD a matter of innate factors ?
Are they the result of exposure to an older sibling with ASD ?
Are they, in some cases, the result of exposure to parental “style” reminiscent of mild ASD in respect of domains such as communication ? [ ... Or, one might say, of the general circumstances in a family where some emphasis in terms of family resources of time and attention may necessarily be directed towards the child with significant needs ? ]
Whatever the case may be, Basco concurs with Stone et al in highlighting the need for careful screening and monitoring of children who have a brother or sister with autism or ASD.)
Children with Autism and Inclusion
It is noted by Reiter and Vitani
(2007) that there have been increasing efforts over recent years to provide
pupils with disabilities the opportunity to experience meaningful social
interactions with typically developing peers.
They are aware of a body of research findings which highlight the importance of inclusion for pupils with special needs, but argue that the effect of inclusion upon the peers in mainstream classes is hardly ever mentioned.
The experience of these authors in teaching pupils with and without autism has been that mainstream peers, initially willing and enthusiastic about including children with autism at around age 6 or 7 years, become less positive during the following years so that, by around the age of 8 or 9 years, there may well be a greater detachment and even some negative attitudes towards the children with autism in their class.
Reiter and Vitani highlight the significance of limited social or communicative skills among children with autism so that they will be at a disadvantage when it comes to interacting with others and in participating in the (complex) communication exchanges.
However, their review of studies demonstrates clear differences in behaviour when the children in question have the opportunity to interact with typically-developing peers as opposed to other children with autism. It is noted, for example, that within a mainstream grouping, there will be fewer autistic behaviours and more normative behaviours, including a greater use of language by which to express feelings.
Evidence also exists that the effects of programmes designed to prepare peers for the inclusion of children with autism can be very helpful, leading to positive influences upon the social functioning of children with autism. What seems to be critical (see for example, Roeyers 1995) is the provision of direct and explicit guidelines to the children about how to initiate contacts and how to establish play with the children with autism.
However, these included pupils are not necessarily accepted or given peer support as a matter of course; they may instead be ignored or actively nagged by other children.
Reference is made to the study by Ochs et al (2001) which revealed that pupils with autism, despite their difficulties in interpreting the intentions and feelings of others, were aware of rejection and of negative attitudes towards them. In response, these pupils may react by ignoring the other members of the class, or by seeking to imitate them and to become more assertive, or by simply sharing with their parents their negative experience of inclusion.
The implication is that the contribution of mainstream peers in acting as supporters or even teachers of children with autism is very important, and that they can contribute significantly in terms of direct help and provision of role models. The problem as observed by the present authors is that there may be a process of “burnout” on the part of the mainstream group and a diminution of their positive attitudes and practical input.
Burnout is defined as a process by which continued pressures gradually lead to cognitive or emotional fatigue and reduced functioning ... a belief that expectations are beyond one’s capacities.
In respect of inclusion in mainstream classes of children with autism, the concern is that, however beneficial for the target children, it may present significant pressures upon the other children and that they may experience a form of burnout.
The goal of the present authors, therefore, was to identify a model of peer involvement by which to achieve gains but without the negative sequelae.
Their basic model was that of Mediated Learning whereby the mediators (in this case, mainstream peers) intervene between the child with autism and the stimuli that are continually available. This may involve some simplification or selection or clarification of the input.
The study set out to determine whether negative attitudes held by peers towards the children with autism could be correlated with the degree of burnout, as well as whether or not an explicit intervention programme, based upon mediation principles, could improve the contribution of the mainstream peers and maintain their positive attitudes.
The study was carried out in a class of 9-10 year old children (12 boys and 11 girls). 2 pupils with autism were part of the class, and had been there since the establishment of this class at around age 6. These 2 pupils were identified as high functioning, verbal pupils, showing no aggressive behaviour, and with a level of sociability and communication that allowed for interaction, in their own style, with their typically-developing classmates.
The measures included a modified version of a burnout questionnaire originally developed for adults (Friedman 1999) covering matters like fatigue, or “depersonalisation” of the children in need of support, or feelings of a lack of self-fulfilment.
The quality of the mediation/intervention was assessed by a questionnaire dealing with elements such as a sense of efficacy, coping with challenges, etc.
The final measure was the Attitudes Towards Children with Handicaps Scale
(Rosenbaum et al 1986) designed to tap the feelings of the mainstream peers.
The mediation programme involved 19 weekly sessions each of around an hour in which the children were introduced to activities to enhance group cooperation, to demonstrations and practice of how to provide direct support, etc. A baseline evaluation using the various measures was organised; with a repeat use of the same measures at the end of the intervention period.
The data showed that there was a significant and negative correlation between the behavioural/affective measures and burnout according to reports of fatigue and lack of self-fulfilment.
In other words, pupils who showed limited willingness to be actively involved with the children with autism, and who were emotionally stressed by them, showed higher levels of fatigue and a lack of self-fulfilment.
However, it was also found that the effects of the training programme did include a more effective and fulfilling pattern of mediation on the part of peers; and that signs of burnout were significantly fewer at the post-intervention assessment.
There was found to be a significant difference in attitudes with a more positive set of feelings towards the children with autism at the end of the intervention.
In their discussion, the authors acknowledged the limitations of this present work, in terms for example of its “pilot” nature and its small scale.
However, there appear to be important implications in terms of needing long term and ongoing guidance with peers concerning how they might best support the children with autism in their class. Short term training or peer awareness raising sessions are not sufficient to maintain the momentum or to maintain positive attitudes, but the use of a specific format such as Mediated Learning reinforces the point about the need for a consistent structure plus opportunities to observe progress and to reinforce peer actions.
(This further underlines the point, one might say, that mere exposure to a mainstream class and to typically developing peers are not sufficient to bring about meaningful benefits for the children with autism; rather, the children themselves require direct guidance in respect of how to deal with specific issues, like initiating contact with other children, and the other children require equally specific and regularly updated guidance about how to interact, how to support, and how to communicate with the children with autism ... all of which highlights the need for planning and resources, and demonstrates that true inclusion is a complex issue and far more than simply attending a mainstream class. It also highlights that inclusion, by definition, involves a particular context ... viz, the mainstream peers ... and this current work offers a reminder that these children, too, have needs which merit attention and that their positive feelings and their well-being should not be assumed .)
Raising Awareness of the Nature and Implications of Intellectual Disability
The work of Rillotta and Nettlebeck (2007) is not specific to autism and ASD, but relates to disability more generally, and is concerned with the effect of linking inclusive educational practice with training in awareness of disability among secondary school students.
Their starting point was the recognition that inclusion policies have been operated for a significant time, but that there is a continuing lack of clarity over how best to foster positive attitudes among the typically-developing peers.
They define attitudes as learned knowledge structures which are amenable to change and subject to the quality of information available. The implication is that long term attitudinal (and behavioural) change can be achieved through a combination of increased contact between students with a disability and their mainstream peers, and education designed to highlight shared similarities.
The theory of “ Mere Exposure
Effect ” described, among others, by Zajonc (2001), holds that repeated
exposure to some circumstance can be sufficient to bring about a more tolerant
and supportive attitude towards that circumstance.
However, there has arisen a growing body of evidence and informed opinion that exposure alone will not suffice to challenge existing stereotypes and to bring about positive attitude change, and that there is a need for persuasive communication in the form of repeated access to information.
What also matters is the extent of different kinds of contact between the “in-group” and the “out group” (such as students with some significant special needs) including how often and for how long they interact, whether the contact is routine and voluntary, and what status is attributed to the students in this minority group (ie whether or not they are seen as having a status equal to that of the rest of the class).
Rillotta and Nettlebeck go on to note that effective inclusion and social acceptance can be inhibited by anxieties and negative attitudes on the part of parents, teachers, and other professionals which may be adopted by the mainstream students. An inhibiting effect can also arise from non-supportive environments within which the opportunities for social interaction are limited.
It is important, therefore, to provide the mainstream peers with opportunities both for interaction with their fellow students who have some disability, and information and familiarisation about the various aspects of the disability in question. Without this experience, there will be an inadequate recognition or valuing of diversity.
In other words, in contradiction of the Theory of Mere Exposure Effect, it has been recognised that simply placing a student with an intellectual disability within a mainstream setting is not enough to bring about attitudes and behaviours among peers indicative of social acceptance.
Meanwhile, the authors’ review of relevant research findings demonstrates that inclusive education can produce positive outcomes but that there are continuing obstacles such as high levels of pressure upon teachers (including the demand for overall high levels of achievement among their students), the costs of ensuring adequate resources across a range of schools, the perceived difficulty of funding/providing individual attention, disruptions to classroom routines, and increased workload ... as well as continuing attitudes indicative of stereotyping or rejection which may be sufficient in themselves, if observed by the students with disabilities, to inhibit their self confidence.
The question is raised, therefore, about the constituents of an effective education programme by which to foster true inclusion, with precise content and duration seen as two significant elements.
For example, evidence can be cited that short friendship-awareness activities or one-off educational sessions are not successful in improving social acceptance.
Meanwhile, other considerations not covered by existing research include whether or not the relevant information should be provided in formal classroom sessions by teachers or less formal settings involving interactions among groups of students; discussion about the needs and the capacities of individuals with disabilities and how these may be recognised and assessed; and exploration of the similarities as well as the differences between people with and without disabilities.
Encouraging results have been reported in terms of positive attitudes among students in schools with well established policies concerning integration; in schools where students with significant disabilities share a range of (non-academic) activities with typically developing peers, such as social and recreational activities, social skill groups, etc.; and in schools where cooperative learning is pursued ... ie where students with some disability are included within groups who are working towards some particular goal.
However, Rillotta and Nettlebeck note that such evidence can be somewhat limited by the short term nature of the time scales involved (eg attitude formation or attitude change is typically assessed over a period of only a few weeks), or by the fact that results are frequently reported by special education staff who may be thought committed to identifying positive outcomes.
Their own study compared attitudes towards intellectual disability on the part of non-disabled peers who had, or who had not, completed an awareness of disability training programme. The programmes were part of the annual routine in a school which encouraged inclusive learning, and were of two lengths in order to accommodate students of different ages.
The hypotheses were that students who had completed the training would report more positive social acceptance of students with a disability; that longer training would produce more positive outcomes; and that positive attitudes would be maintained over a prolonged period (as assessed in students who had completed the training programme 8 years previously).
The participants were 116 male and 143 female students who were either current or past members of one of two colleges.
School 1 had a student population of 1000 which included 18 students with an intellectual disability who attended regular classes but also received special provision in a separate unit with specialist teachers. This school had run the training programme a few weeks before the study began (thus limiting the opportunity to assess prior attitudes).
School 2 was similar in its demographic characteristics but did not run a training course. 2 students with an intellectual disability were attending, but had not been identified as such to other students.
In school 1, year 6 students (mean age 11-2) had completed three sessions of 45 minutes during the course of a week shortly before the study began. Activities had included getting to know the students with a disability by visiting their unit, sharing “About Me” information, sharing sport and cooking activities, completing homework tasks exploring feelings about disability, attending a presentation about the inclusion programme, and sharing feedback and discussion sessions.
Year 8 students (mean age 13-1) had completed an 8-session training programme spread over 3 weeks which had been completed shortly before this study began.
Presentations were made by mainstream and specialist teachers, and students were required to complete research about intellectual disability and to feed back to their classmates. Video presentations, and guest speaker presentations, covered issues such as inclusion policies, specialist curricula, and family arrangements by which to support a son or daughter with a disability. A central feature of the experience was a sharing between non-disabled and disabled students of the planning and carrying out of an activity that could include craft, art, sport, games, or cooking.
Past students (mean age 20) had completed a 10 session course 8 years previously which was similar to that described above but with 2 additional sessions involving direct interactions and with further video presentations about people’s perceptions of intellectual disability.
All students completed a written version of the “ Attitudes Towards Persons with an Intellectual Disability Questionnaire ”.
The general outcomes supported the predictions that more information about, and more exposure to, people with an intellectual disability would be associated with more positive attitudes.
The students in school 2, who had not had any awareness training programme, demonstrated less positive attitudes than students in school 1. Further, the attitudes among the school 1 students who had completed the training 8 years previously were still positive and comparable to those held by students who had only just completed the training programme.
These results were seen as encouraging, particularly so for female students whose scores were generally higher than those of males.
The authors introduce a note of caution in accepting that it is not possible to conclude that these favourable outcomes were principally the result of the training. This is because the training is confounded with the higher incidence of students with an intellectual disability in school 1 which increases the daily class contacts and which, they believe, can heighten the culture of commitment to inclusion among the staff who will also be aware of the content and aims of the training programme.
They also acknowledge that the current study was limited in not assessing personal experiences of the non-disabled peers, such as having a sibling with special needs, or their family values and beliefs; and in not exploring teacher and parent attitudes which could be reflected in the attitudes of the students.
Nevertheless, this current study does highlight doubts about the usefulness of shorter training programmes and supports existing evidence about the lack of significant effects from single training sessions and one-off friendship facilitating activities.
There is also some question whether training effects vary with the age of the participating students ... so that, for example, some students within the younger age group may not be developmentally ready for the messages delivered by the training.
The two strengths of the study were seen to be the inclusion of students with and without experience of specific training programmes, and the fact that the training programmes had been developed by the teachers (given evidence that programmes implemented by the staff who developed them are likely to be more effective and longer lived).
The final summary by Rillotta and Nettlebeck restated the value of, or need for, training programmes in order to achieve positive attitudes to people with an intellectual disability. Length of training is an important variable and the effects can be long lasting, with the further implication that the most significant and positive outcomes reflect a combination of programmes to provide information about disability, a school ethos and set of policies which are favourable towards inclusion, and frequency of contact between non-disabled and disabled young people.
Parental Appraisal of the Impact of Child Developmental Disability
The study by Trute et al (2007) also concerns disabilities in general and is not specific to autism, but is relevant in highlighting the probability that parenting will have more elements of stress when the child or children concerned have a developmental disability.
On the other hand, these authors review findings and observations to the effect that many parents respond to the challenge involved by developing positive strategies and an enhanced resilience.
Nevertheless, the emphasis in the literature has tended to be upon the negative effects of disability on family functioning, and Turnbull and Turnbull (1993) clustered the negative issues into two clusters.
Firstly, they refer to pervasive negative generalisations whereby parents may focus upon the dysfunctional aspects of their family life; and, secondly, to negative interpretations whereby any event or outcome, even those objectively observable as positive, is perceived in a negative way. This latter type of reaction can be illustrated by a tendency in some family members towards a denial of any positive progress; or the interpretation by third parties of any positive comments from parents as their means of assuaging some sense of anxiety or guilt.
It is correspondingly the case that research on family strengths in the face of disability in a child is very limited in the literature; but there is evidence (eg Scorgie and Sobsey 2000) that positive transformations can be achieved, and a stronger sense of purpose can enhance general family cohesion and strength.
These transformations may include personal psychological growth, improved relationships with others, and strengthened philosophical or spiritual values; although it is recognised that these outcomes may only be observable as a result of longitudinal study and will not be evident in parental responses in the short term.
It has been pointed out by Larson (1998) that parents can adopt both negative and positive ways of responding to a disability in a child.
Further, a developing sense of self efficacy usually balances any (initial) feelings of anxiety or depression. The greater the sense of self esteem as parents, the less likely the probability of feelings of parenting stress.
The study by Trute et al themselves was established to gain insight into parental appraisals of the impact of the disability, and of the implications for family adjustment.
Given anticipated gender differences, separate analyses were conducted for the information given by mothers and by fathers.
The study was part of longitudinal research concerned with families who began to receive support from childhood disability services in two health regions in Canada between October 2000 and July 2001.
151 families met the inclusion criteria, viz, having a child below 12 years of age who was diagnosed with an intellectual or developmental disability, and where there would be no impediment in communications between the parents and research team.
At time 1, a total of 111 families participated, with mothers and fathers completing self report inventories. At time 2 (one year later), interviews were conducted with 103 families.
The children had a mean age of 50 months ... 675 boys and 33% girls. Primary diagnoses included developmental delay (not specified); pervasive developmental delay; genetic or metabolic delay (eg Fragile X syndrome); cerebral palsy; autism; Asperger syndrome; and Down syndrome.
Mean maternal age was 34, with the sample equally divided among full time employment out of the home; part time employment; or full-time at home.
Mean paternal age was 38 with almost all employed full time outside the home.
Family size ranged from 1 to 6 children.
Single parents comprised 19% of the sample; and 9% of the families were of above average socio-economic status, and 48% of low socio-economic status.
The measures used included the Family Impact of Childhood Disability Scale (Trute and Hiebert-Murphy 2002) designed to tap positive and negative appraisals of the impact of having a child with disability; the Rosenberg Self Esteem Scale; and the Family Assessment Measure (Skinner et al 1995) to gather information about perceived family functioning.
The findings from this study indicated that there may indeed be gender differences in the early positive appraisal of the impact on the family of child disability. The mean score for fathers in respect of positiveness was significantly lower at time 1 than the mean score for mothers. By time 2, there had been a converging of scores and significant difference between the means was no longer observable.
This was taken to suggest that the impact of the disability on family functioning may emerge more quickly among mothers, while fathers may have more difficulty in coming to terms with the situation and require more time to form positive perceptions and attitudes.
However, it appears that mothers and fathers hold similar views concerning the nature of negative impacts upon the family and that they emerge quite soon after the formal diagnosis and the initial involvement of support services.
Further analysis indicated that the negativity scores on the FICD significantly predict the perceptions of both parents of longer term family well-being. In other words, the higher the perceived level of negative impact, and the lower the perceived positive impact in the first few months after the recognition of the disability, the more likely the reduction of family well being in the longer term.
This is consistent with existing evidence that positive appraisal of the demands of the care-giving may be very important in enabling parents to sustain the necessary efforts, while a negative appraisal may have the opposite effect; and the authors suggest that this may be particularly saline to the mothers.
Meanwhile, these findings also support the view that initial appraisals and experiences can be both positive and negative although it is more likely that, for mothers more than for fathers, these different reactions can co-exist independently. Internal coping resources and parental self esteem are also linked to a positive adjustment to the child disability in providing a form of stress-resistance resource.
The authors conclude by holding that their findings about fathers’ appraisals and self esteem should be regarded as tentative pending further research data. In addition, evidence would usefully be gained concerning the impact of specific types of disability, and the possible effect of the age of the children at the time of diagnosis. It is acknowledged, too, that these findings apply to this particular and homogeneous sample of parents so that caution is required in seeking to generalise the findings.
Even so, these findings of a link between the extent of initial (negative) appraisals, self esteem, and longer term family adjustment are seen as important ... (with implications, one might say, supportive of the principle of ensuring early advice, information, and both practical and emotional support for the parents, and other family members, of children identified with a disability, as well as any direct interventions for the child).
* * * * * *
M.J.Connor October 2007
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© Mike Connor 2007.
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