© Mike Connor 2007.
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AUTISM AND THE EFFECT UPON PARENTS AND SIBLINGS
This review of studies begins with a reference to resilience in the families of children diagnosed with autism, and the identification of specific processes by which resilience may be achieved.
There follows a description of the involvement of siblings with a brother or sister with autism, and the evolving relationships and responsibilities during adulthood.
The next section concerns the needs, experiences, and coping styles of parents following the diagnosis of autism in a child.
Finally, there is a summary of the reported experiences of a sample of parents of children with various disabilities who had recourse to the Special Educational Needs and Disability Tribunal.
M.J.Connor September
2007
Resilience and Families of Children with Autism
The research paper by Bayat (2007) begins with a reference to the growing interest over the last ten years or so into how and why some families facing pressures and adversities are able to function well and to gain strength, while other families who face similar situations do not.
This general area of investigation has been labelled as family resilience; with resilience defined by Walsh (1998) as the ability to withstand hardship and to rebound from adversity, becoming more strengthened and resourceful.
The research into the factors which underlie the capacity of families to function well in the face of difficulties may also be regarded as part of Positive Psychology which seeks to identify factors relevant to health and well-being rather than of psychopathology.
The authors go on to review studies which have perceived family resilience either as an interaction of risk factors and protective factors, or as a flexible and dynamic process involving family strengths and responses at different times and in the face of different circumstances.
Citing Walsh again, there is a recognition of the emergence of a number of key factors which are associated with resilient functioning in a family, viz …
(A later work by this same author – Walsh [2003] – has indicated that for a family to cope with some challenging circumstance, there needs also to be organisational capacities such as flexibility, an inter-communication and connectedness, and an awareness of resources and how to mobilise them.)
In respect of the case of families of children with a disability, there is growing evidence for potential strengths reflected in the effects of providing for the child in terms of positive contributions to the overall well-being of family members.
Such families, as described by Summers et al (1988), seem able to achieve a level of coping with or without the intervention of supportive services, with parents maintaining successful partnerships and children demonstrating positive adjustment. Their reaction to the experience of a child with a disability included the development of heightened patience, compassion, and general acceptance of, and respect for, other people … with members of some such families able to provide support to other families.
The present authors note, further, that many of the assumed problems, and the predicted negative or overwhelming experiences, among families of children with disabilities have not been observed.
Scorgie and Sobsey (2000) are among those researchers who point out that, for example, there is no consistent evidence for differences in the incidence of problems in parental relationships (and separation) between parents of children with and without disabilities. The data are at best inconsistent, with some analyses showing a greater risk of such difficulties among families with a disabled child; others finding a lower risk among such families.
What matters, according to these authors, is the presence of “transformations” … ie experiences leading to the development of new perspectives and attitudes, or of new roles and activities.
These transformations could be classified either as personal, in terms of new beliefs, responsibilities, and the gaining of different or more fluent skills, such as advocacy on behalf of the child and assertiveness; or as relational, in terms of new communications and sharing of more positive and supportive interactions within the family and greater networking outside the family.
Bayat argued, on the basis of the studies reviewed, that it would be expected of many families of children with disabilities that they would be able to make positive adjustments through shifts in cognitions and attitudes.
To seek evidence by which to support this view, Bayat examined the role of parental perceptions and their effect upon the quality of family life; and sought to identify those factors most linked to resilience.
The first part of the study involved collecting information from a sample of 175 mothers, fathers, and caregivers of children with autism in one US state. The respondents included 17% fathers, 77% mothers, and 6% siblings or other family members acting as primary carers.
All the children met the formal criteria for diagnosis as autistic and their ages ranged from 2 to 18 years. 80% were boys whose mean age was 10 years, and the mean age of the girls was 11 years. The majority were in the moderate to severe range of autism, and 60% displayed some aggressive behaviours ranging from mild to severe. It was acknowledged that the sample showed a demographic bias in that white and upper-middle-class families were over-represented.
The children were receiving a variety of services both in and outside school. Most were in state schools where the most commonly used strategies included PECS, ABA, and elements of the recommended activities in the guidelines “ Treatment and Education of Autistic and Related Communication Handicapped Children ”.
Some children were involved in therapies additional to what was provided in school, such as counselling (12%), dietary intervention (16%), OT/sensory integration (60%), medication (27%), physiotherapy (12%), social skill training (41%), and speech therapy (75%).
The parents and carers responded to three open-ended questions. The first two questions were concerned with their thoughts and perceptions about the effects of autism on the family generally and upon themselves particularly; and the third sought a description of the child with autism.
The initial analysis showed that responses to the first two questions fell into the categories of …
The categorisation of responses to the request for a description of the child with autism was tri-partite ….
(… which presumably infers a neutral stance)
The general findings concerning evidence of family resilience included the significance of the capacity to pull family resources together and to maintain a connectedness and unity. A majority of the families described themselves as having become closer as a result of having a child with autism … albeit after a period of marked stress in some cases at the time of initial diagnosis.
There was also the common report that working together led to greater mutual understanding and stronger relationships among family members. In some cases, autism in one of the children brought the siblings closer together even to the degree of giving up their own freedom in order to share in the care of the child with autism.
Flexibility and the capacity for good communication one with another were seen as key strengths underlying resilience and for being able to meet changing demands on the family as a whole.
However, it was noted that each family was unique in respect of the time needed to adjust and adapt to the circumstances surrounding the diagnosis of the child with autism. It appeared that around two years were required for many families to come to terms with the situation and to learn to adjust to the particular demands of the autism.
Motivation to help the child progress, along with observational improvements in the child’s functioning, were found to be important for the adjustment and cohesion of the family as a whole.
The author went on to describe how resilient families can make some positive meaning of adversity. For example, they may refer to the knowledge acquired or some personal quality developed such as an increased sensitivity to small benefits and gifts and achievements, or a greater awareness of and compassion towards individual differences.
Again, it seems that a period of around two years after diagnosis is acquired for this stage of adjustment to be reached.
Families tended also to speak in terms of a shift in philosophy, and being able
to focus upon things that really matter, while not taking anything for
granted.
Meanwhile, a sizeable number of respondents (around 40%) referred to the development of strengths among all members of the family, such as the sensitivity about individual needs and individual differences shown by siblings, and their greater capacity for care and concern for others.
Having a spiritual belief system appeared to be a component of resilience; and nearly half of the respondents made some reference to new spiritual beliefs or the confirmation of existing religious convictions.
In the concluding summary and discussion, Bayat cites the evidence gained by the survey for the resilience of families despite the considerable challenges of looking after a child with autism.
While the themes explored corresponded to those set out by Walsh, it is suggested that other strength factors exist, such as the development among parents and carers of the role of active advocates on behalf of the children.
The limitations of the study are acknowledged, notably the matter of the bias in the demographic profile towards the higher end of the socioeconomic range, and the reliance upon input from one family member and the corresponding lack of input from the children with autism themselves.
The implications include the desirability of ongoing survey work with a more diverse range of families, and the use of a range of methods for information-gathering, such as face to face interviews, all designed to identify all the factors that may contribute towards resilience and to gain pointers about how these factors could be strengthened for the benefit of the families.
Meanwhile, Bayat suggests, professionals working with families would usefully avoid a complete focus upon perceived problems and their alleviation, but allow time also for highlighting the families’ existing strengths and for building on the positives when planning intervention.
Siblings of Individuals with Autism (and Down Syndrome) In Adulthood
The study by Orsmond and Seltzer (2007) examined the nature of the practical and the emotional involvement in respect of sibling relationships among adults who have a brother or sister with autism spectrum disorder (ASD) or Down syndrome (DS).
They note the existence of considerable evidence about the relationships among young children who have a brother or sister with these conditions, but have identified little or no research data concerning adults.
Their specific questions included …
In their introduction, these authors recognise that adults who have a sibling with ASD or DS may often be expected to take responsibility for the well being of that sibling once the parents are no longer able to do so. They may face the difficulty of offering the necessary care and support while seeking to manage their own family, social, and occupational lives.
They also note that ASD and DS are very different in their behavioural nature in that there is an inevitable degree of cognitive impairment among people with DS, but those with ASD show wide variability in their cognitive functioning. Further, ASD is characterised by the particular issues of social difficulties or deficits, and the pursuit of repetitive or unusual interests and activities …. and it appears typical that, compared to children with a brother or sister with DS, those with a sibling diagnosed with ASD will have spent less time with this brother or sister, will have experienced a less close relationship, and maintain greater anxiety about future arrangements.
Meanwhile, existing observations indicate that, in the case of siblings of adults with learning difficulty, sisters are more likely to be seen as the primary care givers and to be more involved than brothers in the lives of the sibling with learning difficulty.
The gender of the sibling with a disability can also influence the sibling
relationship and experience with evidence cited that siblings tend to be more
involved with, and feel more positive about, a learning-disabled brother than a
sister; and that sisters demonstrate more contact with a brother with learning
difficulty than with a sister with such difficulty.
Such evidence is not wholly consistent, but the present authors predicted that, in the case of ASD and DS, the gender of the sibling with disability would be more significant for the non-disabled adult sister than brother.
In respect of factors underlying variation in the sibling relationship, the prediction was that functional limitations and the level of behavioural problems in the sibling with ASD or DS would act as stressors, and that these “pressures” would be greater among the adults with ASD than with DS. For both groups, it was anticipated that there would be a more positive emotional relationship and a higher level of contact and shared activities when the brother or sister with the disability had better functional skills and fewer maladaptive behaviours.
Their investigation examined two forms of coping skill.
Problem-focused coping refers to actions that directly address some difficulty and seek to devise adaptive strategies; while emotion-focused coping involves a maladaptive response to a difficulty in that it is avoided or is emotionalised.
The prediction was that a greater emphasis upon problem-focused coping and less upon the emotional response would be associated with a pattern of closer sibling relationships; and that more pessimism about the disabled brother or sister’s future would be associated with a pattern of limited involvement and contact.
The study completed by Orsmond and Seltzer involved the matching of a sample of 77 siblings with a brother or sister with ASD with a similar number of siblings with a brother or sister with DS.
The respondents, who were between 21 and 56 years of age and of whom more than half were sisters, completed questionnaires about their instrumental and affective involvement with the sibling with ASD or DS, about their growing up with a brother or sister with a disability, and abut their coping skills and feelings (pessimism) about the future.
The information concerned the amount of contact and the extent and nature of shared activities; the degree of affection or respect or understanding felt towards the sibling and perceptions of his or her reciprocal feelings; the characteristics of the disabled sibling in terms of personal care, life and independence skills, mobility, and interaction; perceptions of the extent to which the presence of the disabled sibling had impacted on their own lives (in, for example, their relationship with parents, with their partner, career, family life, where to live, and general planning); and their own characteristics including age, marital status, educational level, occupation, etc.
The overall findings were described as largely similar to those concerned with young children who have a brother or sister with ASD or DS. For example, existing research, such as that of Kaminsky and Dewey (2001), has shown that siblings of children with ASD spend less time with them and share a less close relationship than siblings of children with DS.
This pattern of frequency of contact and closeness was observed in the current findings among adult siblings; and it was noted that the siblings of adults with DS were more optimistic about the future than were the siblings of individuals with ASD.
The less contact and less positive affect in the case of siblings of an ASD brother or sister was thought likely to reflect the social and communicative difficulties in his or her behaviours; but it was also considered possible that some difficulties in the siblings could contribute given that existing evidence has shown that family members of an individual with ASD may themselves have characteristics of the broader phenotype. The presence of such characteristics may also explain the lower levels of marriage and parenthood in these siblings.
In any event, the indications are that the siblings of adults with ASD may experience some problems when their parents can no longer take the prime caring role because of the more limited emotional closeness and greater anxiety about the future compared to siblings of adults with DS.
On the other hand, perhaps counter to what might have been expected, the siblings of the individuals with ASD tended to report positive impacts upon their relationships with parents. It appears commonly to be assumed that parents will have less time available for their non-disabled children, but the results of this current study suggest that the siblings did not feel that relationships with parents had suffered.
Meanwhile, and clearly in contrast to the prediction, there were few significant gender effects noted, and those that were found concerned sisters who had a sister with DS. This sub-group reported that a greater number of aspects of their lives had been affected (positively or negatively) and that they used more emotion-focused coping strategies than brothers with a sister with DS.
It was speculated that this could reflect concern over the assumption or expectation that they will take on additional responsibility for their sibling with the passage of time.
Some similar and some unique factors predicted the sibling relationships and extent of involvement in the two groups.
For both the ASD and DS groups, greater positive emotion and greater use of problem-focused strategies were found among families with the more modest educational levels; and more shared activities when the disabled brother or sister had higher levels of independence. Living in close proximity was a further and predictable factor in respect of extent of contact, but not necessarily of positive affect.
Siblings of adults with DS (but not ASD) reported greater affective and instrumental involvement if they did not have children, if they felt less pessimistic about the disabled siblings’ futures, and if they felt that their own lives had been impacted to a greater extent. It was not clear why these associations were not observed also among the ASD group.
One practical implication drawn by the authors was the desirability for help on the part of support services to enable siblings to appraise their own experiences positively as a way of strengthening the sibling relationship in adulthood. Access to resources appeared also to be a significant factor in the probability of support (problem-focused coping) for the individuals with a disability, especially those with DS.
It is accepted that the study has limitations in terms, for example, of the cross-sectional design which means that causal or directional inferences cannot be made; and the data about relationships were gathered solely from the perspective of the non-disabled siblings. Further, the findings may not be generalisable to the full population of siblings of adults with ASD or DS since the current findings concern the views and experiences of siblings who have an involvement in the lives of the disabled brother and sister (and who were willing to participate in this research study).
Nevertheless, it was concluded that existing research has consistently highlighted the greater challenges faced by parents of children with ASD than with other conditions as well as some risks for the psychological well being of siblings.
The current study indicates that the stresses that impact upon families of children with ASD may have long lasting effects, but that not all the impacts are negative.
Parental Coping When a Child is Diagnosed with a Severe Disability
The paper by Graungaard and Skov (2007) is not specific to autism, but their recognition of the difficulty of informing and supporting parents who are realising that their child has a severe or complex disability will certainly apply to autism.
Their introductory research review highlights the stress that parents are likely to face at the time of the diagnosis, and that the initial experience with professionals may have a significant and lasting influence upon the parental ability to cope with the implications of the condition
This review has suggested that parental satisfaction with the communication processes with clinicians, and the initial disclosure of the diagnosis, can be quite low.
The factors that appear to be important for parental satisfaction include the minimising of the length of time that elapses between the initial suspicion of disability and the formal diagnosis; the setting-out of a clear diagnosis rather than an uncertain or unknown diagnosis; and the degree of empathy and understanding perceived in the clinician who conveys the information.
Parental satisfaction is reported generally to have increased in the last 20 years, and it is noted that the parents of a child with Down syndrome tend to be more accepting of the diagnosis and more satisfied with the communication processes than parents of children with other conditions.
The corollary is that many parents still experience a long and anxiety-arousing diagnostic period and Daily et al (2000) are among a number of researchers who note that a certain diagnosis is not rapidly achieved in the case of children with cognitive and psychosocial difficulties.
Autism may be a case in point in that this is a complex condition which overlaps or is comorbid with other conditions, and time is required for careful observations in order that a diagnosis can be made with confidence …. but this may be (mis)interpreted as a delaying of a diagnosis or a prevarication on the part of professionals who are simply seeking to avoid a false positive diagnosis as much as a false negative diagnosis.
In any event, it is reported by Baird et al (2000) that dissatisfaction with disclosure processes is related to greater degrees of subsequent parental depression.
It may also be the case that parents who believe that the clinician does not understand their needs often believe, too, that the clinician does not understand the child’s needs; and there is a risk of underestimating the parents’ emotional stress and need for information.
Graungaard and Skov recognise that parental reactions have been explored in many studies, but that a retrospective design has typically been used.
Their own study set out to gain parental perceptions during the diagnostic processes in order to gain further insight into the relatively under-described relationship between the certainty of a diagnosis and parental experiences and coping styles.
The definition of “coping” was taken from Lazarus and Folkman (1984) who referred to “ the constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person”.
Their approach also divides coping into problem-focused elements(designed to manage or to alter the problem giving rise to the distress) and emotion-focused elements (directed towards regulating the emotional response to the problem).
Their own design took the form of a longitudinal interview study of 16 parents
(8 couples) of severely disabled children. The first interview took place within 3 months of the disclosure of the disability; and the second 2 years later. The children’s ages ranged from 1 month to 27 months at the time of initial recruitment.
In 3 cases of severe impairment of interaction or developmental delay or mental and motor delay, the diagnoses were not known; the other 5 diagnoses included Down syndrome, Wolf-Hirschlorn syndrome (delayed motor and mental development, feeding difficulty, heart disorder, epilepsy, hypotonia), lumbar meningo myelocele
(cerebral shunt), lissencephali (feeding problems and severe dystonia), and infantile spasms (delayed motor and mental development, and hypotonia).
Five main themes emerged from the reported parental experiences, all related to the core issue of diagnostic certainty … viz …
The emotional or cognitive contents of the reported experiences were illustrated by the use of 4 dimensions ….
It was noted that the parents of a child with an unknown diagnosis typically fluctuated much more between the poles of these dimensions than parents of children with a clear diagnosis (such as Down syndrome).
Problem-focused strategies included the collection of information, learning new skills, seeking to control the professionals’ decisions and actions, investigating alternative interventions and training possibilities, and seeking second opinions.
Emotional coping strategies included retaining hope, creating future images, ignoring the seriousness of the condition, seeking social support, concentrating on possibilities in the child, evaluating beliefs and identifying positive aspects of the situation.
A gender difference was identified in that fathers tended to need a longer future perspective and a firmer idea of what the future might bring.
Mothers were more likely to focus their energy upon caring for the child and general parenting tasks. It appeared that, after the initial stress of the diagnosis, they could not afford to dwell on anxiety or feelings of loss.
This kind of difference sometimes led to a “distance” between the parents, and also complicated communications with professionals.
The question of having another child was a major concern to all the parents, with the associated quest for an aetiological explanation in order to predict the risk of some disability in any subsequent child. To many parents, a sibling was considered likely to be of benefit as a source of stimulation for the child, and as a safeguard in terms of providing for the child when the parents could no longer do so.
A common reaction to the disclosure of a diagnosis of severe disability was a sense of powerlessness and uncertainty about future events, and this commonly became translated into a quest for specific and practical actions to take … and the seeking of a definite diagnosis was often stimulated by the hope that a clear diagnosis would be matched by a clear pattern of potentially positive interventions.
A failure to seek some plan of action seemed to be akin to giving up hope, and parents felt it to be of critical importance to feel that everything that could be done for their child had been done both in and beyond the standard systems …. although parents tended not to reveal their recourse to alternative treatment for fear lest they cause some offence to the clinician.
The responses from most parents indicated a worrying difference between their own and clinicians’ perceptions of their child. The parents tended to focus upon possibilities while the clinicians described the child in terms of the disabilities.
Nevertheless, as far as satisfaction with communication is concerned, it was found that parental satisfaction with the diagnostic process was strongly related to the certainty of the diagnosis given and to the length of time the process had taken.
In a few cases, the disclosure of a diagnosis involved a single occasion, but more often involved a series of appointments while tests and more tests were arranged and the results discussed, during which the diagnosis was discussed several times.
The authors commented that this period of uncertainty and of hope or distress, and various statements from different professionals, was critical for the parents in terms of their feelings of trust or mistrust in the professionals.
Two dominant parental expectations were identified …..
The parents typically felt a major responsibility for the treatment of their child and wanted to be seen as very knowledgeable about his or her needs … with frustration experienced if the clinicians appeared not to recognise and respond appropriately to this feeling. Frustration was also the result of the failure of the expectation that a diagnosis would be matched by a clearly defined cause and a treatment plan.
Further, during the discussion and counselling processes, the parents needed to retain hope and positive possibilities, but this often conflicted with the responsibility assumed by the clinicians to provide enough information to ensure that the reality of the situation was fully appreciated.
In their summary and discussion, Graungaard and Skov highlighted the three major reasons behind the importance of diagnostic certainty …..
Parental use of coping strategies was found, in this study, to be strongly related to diagnostic certainty and this matches existing findings, such as those of Taanila et al (2002) who indicated that low-coping families included a majority whose children were diagnosed very late, while high coping families were those where some clear aetiology was identified in the children.
Meanwhile, the emotional pressures of having a child with a disability were greatly reduced if the parents identified practical actions by which to help their child; and the meaning attributed by parents to the diagnostic process was typically linked to a search for coping possibilities and for predictability of events, even if the importance and implications of a statement of diagnosis could extend beyond what was medically realistic.
The Experiences of Families Involved in SEN and Disability Tribunals
The survey completed by Runswick-Cole (2007) begins by noting that it is since 1981 the parents of children with special educational needs have had the formal right to share in the decision-making about educational provisions.
However, she continues, experience has indicated that there is often conflict between parents and LEAs (who are both assessors of need and providers of services).
(NB. This survey is not specific to the experiences of families with a son or daughter with autism, but may be thought salient to such cases given the statistic that the overall number of tribunal cases has been declining over the recent past but that cases involving children with autism and ASD have maintained a high incidence.)
The conflict in question most commonly concerns the child’s statement of special educational needs in terms of disagreement between parents and an LEA over whether the child requires a statement, the level and type of support needed in school, or the school place most appropriate to provide for the identified needs.
Professionals and politicians may perceive statements as bureaucratic and costly, while parents see them as legally binding documents which convey a guarantee that the necessary provision will be made available.
Runswick-Cole discusses the use of the terms “disabled families” or “families of children with disabilities” and she explains her preference for the use of the former
(disabled families) because it locates the whole family within a social model framework and highlights disability as “a form of social oppression which can act upon all the family and not just the child with the special educational needs or disability”. Her premise is that it is not the child with impairments who has disabled the family, it is Society which has disabled the family.
(Thus, Runswick-Cole nails her colours firmly to the mast. The present writer - MJC - would comment that, while it is useful and informative to have access to survey data concerning reported parental experiences of and feelings about a tribunal, one might usefully keep in mind that conflict, by definition, involves two or more opposing and commonly polarized perspectives. A focus upon views representative of one group of protagonists, important though this may be, can provide an insight into only one side of the reported conflicts between parents and LEAs.)
In her review of literature, Runswick-Cole describes how, hitherto, the emphasis has been upon the “deviant” characteristics of the family member with some impairment, and that, as set out by Read (2000), the experiences of parents and children have tended to be explained in terms of intra-family or intra-psychic functioning. One contribution in the Read book is quoted as suggesting that parents may have been caught in a “cannot win” situation in that they may be perceived as not being able to cope or, for those who appear to be coping well, as having some lack of realism about the child’s difficulties (even seeking to disguise their rejection).
However, she goes on to describe a recent shift in research concerned with families, as noted by Read (op.cit) or Cole (2004), involving a move away from an emphasis upon what is perceived as parental grieving or denial, and towards the diversity of parental experience including the rewards and happiness as well as the stressors and anxieties.
This present survey, completed during a 6-month period from the latter part of 2004 to the early part of 2005, involved a series of interviews with 7 fathers and 17 mothers who had registered an appeal with SENDisT.
The majority of parents were in dispute about the level or type of support available to the child. The decisions were described as life-changing either in securing the provision sought or rejecting the parental appeal. It was also noted that an unexpected and stressful outcome of going to Tribunal, as reported, was a difficulty in having an LEA implement the tribunal’s directions either in part or in full.
Reference was made to one case where the parent went to Judicial Review and another where a complaint to the DfES was found to be sufficient (while this latter case also involved a worry on the part of the mother that there would be an ongoing attempt by the LEA to erode the support and that a further battle would have to be joined).
In another case still, the mother reported no way of knowing whether the Tribunal decision was being implemented by the school but that she believed herself to be the only person monitoring the outcome … a belief supported by a comment attributed to an LEA officer who described the LEA’s reliance upon the schools to deliver the provision following delegation of resources to the schools, and by a comment from a SENDisT chairperson that the panel would not know whether their decision had been implemented.
Runswick-Cole quotes a report from the National Autistic Society (2003) describing the marked difficulty reported by parents in getting LEAs to implement Tribunal decisions, or in being able successfully to appeal to local government ombudsmen or to the DfES. She comments that … “despite their best efforts, parents can still be thwarted by the LEA or school in getting what the tribunal has ordered for their child.”
The financial implications of an appeal to Tribunal are considerable, with the concern expressed that such a course may not be an option for many families especially when there may already be additional costs involved in providing for the disabled child and reduced opportunities for (full-time) employment for the parents.
However, the financial costs were seen as small in comparison with the emotional costs in families already under stress in their day to day routines. These costs were reported to include depression, general psychological well-being, and negative impacts upon physical health.
Read (op.cit) is quoted again as suggesting that some of the debilitating aspects of he lives of children with disabilities and their parents/carers are not necessarily the direct consequences of living with the impairment, but the socially and politically constructed stresses are those which make for the most devastating and debilitating experiences for parents.
There may be gender effects in respect of the parental experiences in that it is commonly the mother who takes the greater part of the caring role and the advocacy role. The father, meanwhile, may be under increased pressure if he is the sole earner, and may be limited in the opportunity to take time out for meetings.
This being so, it may be the mothers more than the fathers who are held to account by some professionals for allegedly questionable parenting, including over-anxiety … with the examples cited of one mother who reported being made to feel that she had exaggerated her concerns, and of another who described how she had blame attributed to her along with implications of low competence as a parent.
Meanwhile, a recurring theme in the responses concerned the difficulty that fathers had in accepting that their child had special needs or some impairment.
Cole (2004) and Read (2000) are cited again as offering evidence that fathers, who tend typically to leave much of the caring and organisational role to the mothers, become more directly involved when some conflict arises and more active in preparing for, and attendance at, pre-Tribunal meetings and Tribunal hearings.
Further, according to a survey conducted by the organisation Contact-a-Family (2003), the effects of having a child with a disability can bring the parents to a closer relationship, but 31% of their sample referred to some increased problems between the parents, 13% to major problems, and 9% arguing that it had led to separation.
With regard to impacts upon the child with the special needs or disability, the responses in the survey suggest that the period of preparing for the Tribunal can be difficult. Parents are seen as being caught between the need to spend time with the child and the need to prepare for the Tribunal. In some cases, the impact was not seen as significant, but such cases were those where there were fewer work commitments outside the home and all children were in full-time education.
Some of the children were said to have suffered vicarious affects of the stress upon the parents or their necessary devotion of time to paperwork; and two responses made specific reference to the anxiety in the children about the impending decision and about which school they would be attending.
Runswick-Cole summarises the survey by describing Tribunal processes as stressful and demanding for parents, particularly if there is some struggle required to ensure that the LEA implement the Tribunal ruling.
She notes the absence of the child’s voice at the Tribunal hearings, especially significant since the child’s perceptions and experiences may not be the same as those expressed by the parents.
While there are many aspects of the Tribunal processes that are seen as negative, a minority of parents see the process as empowering, and as enabling their development of an advocacy role.
The overall picture is one of high costs in both time and emotion, but parents continue to value the facility, with implications for reform of the SENDisT systems rather than their removal.
(As a concluding commentary, the present writer – MJC – would reiterate some concerns that, for example, this survey involved only a small sample of parents. It may also be the case, one does not know, that the parents who were willing to take part in the survey are not wholly representative of all such parents. One does not know, either, what were the categories of need or disability represented in this sample nor the precise circumstances. There is no indication of the actual nature of the dispute and where the issue lay … and what provisions had been offered by the LEAS. Perhaps such levels of information would be beyond the scope of a survey, but the corresponding need is for acknowledging the relatively simple and uni-lateral nature of the survey.
It is good to evaluate systems from a range of points of view, and one values the parental views. The concern remains, however, that this survey covers only parentally-reported experiences and opinions, and the presentation does sometimes adopt a rather emotive style, and an apparent acceptance of the parental view as unquestionably factual … such as the statement that “ parents can still be thwarted by the LEA or school in getting what the tribunal has ordered ” when it is actually a matter of the parents’ perceptions and reports which may well be entirely valid or which may reflect a certain individuality of interpretation. Again, one does not know.
What one can say, however, is that there does appear to be a common feeling among many parents, reinforced by these current findings, that the system for assessing SENs and the allocation of resources is complex, perhaps even dense, and that confrontations or references to “battles” are only too common. In other words, the facts of cases may vary, the circumstances may vary, the interpretations of issues may vary, but what appears to be fairly constant is the stress that can act upon both parents/carers and professionals.
The implication could include the need for greater availability of, and greater recourse to, infra-tribunal mediation opportunities. [It might pondered whether one possible future role for the educational psychologist may be that of impartial mediator in authorities other than his or her own in emerging disputes between parents/carers and LEA representatives.]
It would also seem reasonable to follow up that school of thought which suggests that the role of the LEA as both assessor of SENs and provider of the resources is unreasonable and that some alternative system should be identified.)
* * * * * * *
M.J.Connor
September 2007
REFERENCES
Baird G., McConachie H., and Scrutton D. 2000 Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Archives of Disease in Childhood 83 475-480
Bayat M. 2007 Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research 51(9) 702-714
Cole B. 2004 Mother-Teachers : Insights into Inclusion. London : Fulton
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© Mike Connor 2007.
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