Psychosocial Issues in Childhood
Autism Rehabilitation: A Review
Dr Pam McGrath, B.Soc.Wk., MA., Ph D
National Health and Medical Research Council -
International Program of Psycho-Social Health
Central Queensland University
McGrath, P (2006)
Psycho-social Issues in Childhood Autism Rehabilitation:
A Review. International Journal
Rehabilitation. 11 (1), 29-36.
outlines the research that is available on families coping with a child
with autism or related disorders. The scant research that is available
highlighted along with the strong call in the literature for further
this area. Autism has been described as a condition with a greater
stressors than any other disability. Research that has been completed
explored and used as a basis to examine new directions required to meet
needs of families coping with the demands.Strong recommendations for
research have been developed from the available literature. It is the
expectation that such a review and these recommendations, will go some
assist other researchers interested in furthering the welfare of
coping with autism and related disorders.
Keywords: autism, psycho-social,
The literature on childhood autism
that there is limited research available on many aspects of the topic.
particular, there are calls in the literature for research into
effective educational programs (Schroeder, Le Blanc & Mayo, 1996).
is relatively little research that focuses explicitly on parenting
coping in families of children with autism (Hastings, Kovshoff, Brown,
Ward, Espinosa & Remington, 2005;
& Sofronoff, 2005). Or on the social impact upon families of having
with an autism spectrum disorder (Higgins, Bailey & Pearce, 2005).
a few specific treatment methods have been established as efficacious
children with autism in controlled settings, research examining the
of these treatments into early intervention programs has been minimal
Collins & Palinkas, 2005). Key writers indicate that there is a
understand the difficulties faced by those with autistic disorders in
educational settings in order to manage and help autistic children
learning (Jordan, 2005). In addition, there is a call for
researchers to explore the experiences of families engaged in such
for autism (Hastings & Johnson, 2001).
In short, the literature indicates there
significant need for research to assist with planning for health policy
service delivery to address the profound problems faced by families
child with autism.
We Do Know
Family impact of autism
The one issue that the research is conclusive about is
that families of children with autism report a greater number of
parental depression and anxiety, difficulties in daily management of
financial worries, and concerns over adequate educational and
resources) than those with children with other disabilities (Hastings
Johnson, 2001; Sivberg, 2002; Tarakeshwar & Pargament, 2001).
diagnosed with autism represents
source of stress on the family unit, as not only are the caregivers
but also siblings and relationships among family members (Higgins et
2005). The child with autism typically requires vast amounts of
and energy (Tarakeshwar & Pargament, 2001). Mothers of children
have been found to experience greater stress and difficulties in
compared with mothers of children with other physical and intellectual
difficulties (Pakenham et al., 2005). Research indicates that the brunt
caring falls upon the mother, with fathers helping mainly with
rather than physical care or domestic tasks. Siblings also appear not
involved (Holmes & Carr, 1991). Fathers of children with autism
financial impact and disruption of family activities (Rodrigue, Morgan & Geffken, 1992).
The child’s state is the
and stress among parents with autism (Fleischmann, 2005). Among the
difficult problems that parents mention are, poor language skills;
inappropriate and embarrassing public behaviour; disruption and
the home; violence and aggression; inappropriate sexual expression and
obsessions with eating and toileting (Gray, 2002). Higher levels of
symptomatology are associated with higher reported parental stress
& Johnson, 2001). The more severe the child’s symptom, the greater
degree of parental stress (Dunn, Burbine, Bowers & Tantleff-Dunn,
extremely antisocial, disruptive behaviours associated with autism,
self-injurious, tantrum and obsessive/compulsive behaviours, may
normal family life (Higgins et al., 2005). Less favourable outcomes are
documented in cases of families with aggressive or violent children
2002). The parents in these families have higher levels of stress and
resources in terms of treatment or residential placement to deal with
situation (Gray, 2002). Mothers appear to be the most severely affected
of the family (Dunn et al., 2001; Moes, Koegel, Schreibman & Loos,
Surveys among members of families with a
with autism have found a rise in depression, stress and anxiety
2005). Caregivers of a child with autism often experience helplessness;
feelings of inadequacy and failure; anger; shock; guilt; frustration;
resentment (Higgins et al., 2005). Longitudinal data suggests that
not experience a single stressor; rather they experience a pile-up of
(Pakenham et al., 2005). These studies show that social support is very
important in combating depression and stress (Fleischmann, 2005).
<>Lack of available
The literature is also conclusive that
there is a
severe lack of available services for families coping with a member
autism. Services and the provision of short-term breaks (respites) are
infrequent and insufficient to meet caregivers’ needs (Higgins et al.,
disruptive nature of autistic behaviour, and the lack of public
of the disorder, results in limited availability of child-minding
respite care, which furthers stresses and demands on caregivers
Research suggests the effectiveness of
on the positive coping strategies used by the parents, the resources
within the family, and the availability of social support from the
family and informal networks (Tarakeshwar & Pargament, 2001).
children with autism report more frequent use of wish-fulfilling
information seeking as coping strategies (Rodrigue et al., 1992).
social support and reframing the experience to see some positives are
frequently used coping strategies (Luther, Canham & Cureton, 2005).
Hardiness and social support are predictors of successful adaptation
2002). There is no direct relationship between social support and
suggesting that some of the parents feel isolated despite receiving
support (Dunn et al., 2001). The Internet allows stressed parents of
with autism to forge ties among themselves and extricate themselves
isolation (Fleischmann, 2005).
<>Poorer adaptation was predicted by
stresses, unwarranted maternal self-blame for the handicap, and
definition of the handicap as a family catastrophe (Bristol, 1987). Research indicates that it is
important to discourage parents from using escape and avoidance as a
style. Encouragement of more appropriate coping methods and receipt of
support is seen as beneficial in buffering the stress and reducing
outcomes ( Dunn et al., 2001).
Research involving parents of autistic
indicates that a positive evaluation of direct services to their child,
that my child’s program has my family’s best interest in mind.”) was
helpful resource in coping with the challenges of autism (Tarakeshwar
Pargament, 2001). Figure 1 provides a
on stress factors that effect families with an autistic child.
As outlined by Figure 2, work by
Schroeder et al.
(1996) indicates that there are definable stages and critical points of
transition for families coping with a child with an autistic disorder.
demonstrate the need to plan transitions in advance. Gray (2002)
likely transition points. The pre-diagnosis early years are intensely
stressful. Diagnosis and placement in treatment and educational
reduces stress, the child becomes more orderly and the life of the
settled. Adolescence becomes another period of disruption, with
physical and sexual maturity. Increased seizures and parental emotional
as common problems. Early adulthood also brings increased stresses
with establishing living and work arrangements.
Importance of therapeutic and educational
that has been completed on educational strategies
for autistic children indicates that interventions can have a positive
in terms of teaching autistic children new skills and coping strategies
(Schroeder et al., 1996). Existing data suggests that stress and
associated with autism are amenable to psycho-educational intervention
(Hastings & Johnson, 2001). Anger management programs based on
autistic children to recognise triggers, exert control over their
arousal, and develop strategies through such avenues as role play have
shown through impressionistic reports to be effective (Kellner &
1995). Improved verbal and physical sharing has been demonstrated
Riciardi & Gower, 2005). There is some evidence of improvements in
child’s sociability, emotional control and attention span during
(Gray, 2002). Training courses have been shown to have a beneficial
both parent’s and children’s communication skills (McConachie, Randle,
& Le Couteur, 2005). It is recorded that the best teaching arises
empathetic understanding and a willingness to be flexible, the worst,
rigidity and an expectation that it is the child who must change (Jordan, 2005).
Parents are an important part of
treatment for a child
with autism and have been frequently trained and referred to as co-therapists (Pakenham et al., 2005).
Importantly, the research indicates that special education teachers
the highest support rating in terms of parental perception of support
coping (Newsome, 2000).
<>Several studies have reported
stress as a result of early intervention with children (Hastings &
2001). Indeed, research indicates that beliefs about the efficacy of
educational/therapeutic interventions were associated with lower
stress (Hastings & Johnson, 2001). As intervention in autism are
intensive, time-consuming, and financially draining, it has been argued
is an ethical imperative to ensure that such programs are assessed
independent research (Hastings & Johnson, 2001). However, the
evidence indicates that few providers have a clear understanding of
evidence-based practice, and all providers report concerns about
training (Stahmer et al., 2005). Effective evaluation and documentation
efficacy for educational and therapeutic interventions for autistic
through research is seen as essential to ensure a high standard
Significantly, stress and burnout
contribute to a high
turnover of rehabilitation staff (Layne, Hohenshil & Singh, 2004).
indicates that it is the occupational stress inherent in the job
rather than individual coping resources or demographics that account
turnover (Layne et al., 2004). It is believed that turnover can
affect an organisations effectiveness, or the degree to which an
is able to achieve its goals (Layne et al., 2004).
Moving On -
Priority Areas for Research
The available international research
points to a
number of priority areas of research, if families with a child
autism and related disorders are to receive optimum care. In
is presently a call for descriptive and evaluative research on
psycho-educational programs and services. It is considered important
development of this, to date, neglected area to evaluate interventions
to educate and assist families to cope with autism and related
disorders. Such research
will first and foremost assist service providers in evaluating their
interventions, and thus have quality assurance in the form of reliable
information to guide programmatic growth and development. The
research needs to provide insight on the experience from the child and
perspective to ensure developments are mindful of consumer needs.
the research can make an important contribution to the international
of family, carers, therapists and educators by providing well
insights and evaluations of a diversity of service and program
the care of autistic children.
Based on the prior introductory discussion
available research, Figure 3 provides a suggested outline of key
required for researchers interested in extending the present work
available. It is essential to have
longitudinal base-line data that documents both individual and group
over the period of the child’s involvement in the program or service.
information will provide a basis to build an understanding of the
otherwise of interventions on the child’s development. The base line
to be complemented by thorough and independent documentation and
the particular psycho-educational program under consideration.
attention needs to be paid to the issue of therapist/carer burn out. As each program or service will only be one
of connection and support for families with an autistic child, it is
essential to document such service provision in the context of other
and services available. By taking the four parameters- as outlined in
Figure 3 -
into consideration a full account of the role, efficacy and benefits of
individual services or programs can be gleaned.
This article outlines the research that is available
on families coping with a child diagnosed with autism or related
scant research that is available is highlighted along with the strong
the literature for further work in this area. Autism has been described
condition with a greater number of stressors than any other disability.
that has been completed is explored and used as a basis to examine the
directions required to meet the needs of families coping with the
Strong recommendations for further research have been developed from
available literature. It is the hope and expectation of the author that
review and these recommendations, will go some way to assist other
interested in furthering the welfare of families coping with a child
with autism and related disorders.
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