Mary Law entitled: "Autism Spectrum Disorders and Occupational Therapy' states of the autistic child that this child "may be the child who is standing in the middle of the field at recess spinning around in circles, or she may be the child who can't stand the way a certain fabric feels on her body or the way a certain texture of food feels in her mouth, or it may be the child who is throwing a severe temper tantrum because they just can't communicate their needs." (Law, 2006) According to Law, Autism Spectrum Disorder is characterized by four main categories:
1) Impairment in social interaction;
2) Impairment in verbal and nonverbal communication;
3) Restricted repetitive and stereotyped behaviors and interests and activities; and 4) Delays in development. (2006)
Law states that occupational therapy focuses on assisting individuals to "participate in daily occupations, including taking care of oneself, contributing to society and enjoying life. Occupational therapy addresses barriers to participation of an individual, group or community that may occur as a result of illness or disability and/or obstacles in the social, institutional and/or physical environment." (2006) Law relates that the research findings of Law, Steinwender and Leclair (1998) states findings that "participation in everyday occupations is an important determinant of health and well-being and helps give meaning to life." (Law, 2006) Law relates that research has stated findings that "the behaviors of children with ASD have a significant impact on family roles and activities." (2006) This impact is one that "varies among family members and depends on community supports." (Law, 2006) Interventions are critical resources for parents who face challenges such as "gaining access to appropriate services, including finding professionals in the community which can provide the services, and knowing what kind of interventions are best for their child and family." (Law, 2006) the work of Bernadette Benson and Deborah Dewey entitled: "Parental Stress and Needs in Families of Children with Autism Spectrum Disorder" published in the International Journal of Disability, Community and Rehabilitation states that Autism Spectrum Disorder (ASD) is a severe pervasive developmental disorder" that is characterized "by abnormalities in social interaction and communication, as well as unusual interests and behaviors. Children with ASD initiate few social behaviors and their social expressiveness and sensitivity to others' social cues are limited. (2008) These behavioral characteristics have been linked to "high levels of anxiety, depression and everyday stress in parents." (Benson and Dewey, 2008) Furthermore, "parental stress has also been associated with the community's reaction to the child's diagnosis and the lack of supports available to provide relief to the caregiver." (Benson and Dewey, 2008) Benson and Dewey report the conducted of a study with the purpose of replicating findings of research examining levels of stress in parents of children with ASD. The study involved 55 parents of children with ASD who were 12 years of age and under. The assessment used was the PSI or the 'Parenting Stress Index', which assessed parents' levels of stress using a 5-point Likert-type scale. Benson and Dewey state that their findings are consistent with other studies, which show that regardless of the levels of stress, parents of children with ASD "ranked needs related to the professional community highly. These included the availability of good days programs for their child, knowledgeable, concerned professionals who were capable of providing an early, consistent diagnosis and professionals that provided information about the programs and resources available to families." (Benson and Dewey, 2008) Findings in this study state that it is "imperative that professionals in the field understand how both formal and informal resources can be used to alleviate the stress associated with raising a child with ASD and how resources/needs may differ for mothers and fathers, for those with younger or older children, and for those with a more recent diagnosis." (Benson and Dewey, 2008) the work of Stahmer (2007) entitled: "The Basic Structure of Community Early Intervention Programs for Children with Autism: Provider Descriptions" states that research on Autism has "identified a common set of effective practice elements for early intervention." Stahmer additionally states: "The number of children with autistic spectrum disorders (ASD) has increased dramatically over the past decade. Although the reason for this increase is under debate, the reality is that appropriate early intervention (EI) programs for young children with ASD are in high demand. State and local governments are struggling to provide educational services, which meet the pervasive needs of children with ASD. However, the intensity and quality of services recommended is often difficult to provide due to budgetary constraints and problems retaining staff with sufficient training and expertise in ASD intervention. Public programs have faced criticism and legal action from families concerned that their children were not receiving appropriate services." (2007) Stahmer reports a study involving 80 early intervention providers. Participants were interviewed and asked questions relating to services provided in their service area. Stahmer relates that 96% of provider-participants in the study "stated that their programs offered opportunities for parent involvement." (2007) Types of involvement and opportunities for education of parents included: (1) observation of the child's program - 34%; (2) classes or workshops on specific strategies - 24%; (3) home visits - 23%; (4) volunteer opportunities - 20%; (5) parent support groups - 19%; (6) opportunities to practice techniques with feedback outside a home visit - 16%; (7) participation in team meetings - 14%; and (8) communication, such as communication notebooks, newsletters or written materials - 10%. Stahmer states that "parents involvement in treatment has been a common element in many evidence-based programs for children with autism ever since researchers found that generalization and maintenance of behavior changes were improved when parents were trained and continued interventions at home and in the community." (2007) According to the 'National Autism Plan for Children' (2003) "Active family involvement is essential - there needs to be a high-quality, accurate information for the families which is accessible to families and begins as soon as difficulties are recognized." (Le Couteur, 2003) the work of Baker-Ericzen, Brookman-Frazee and Stahmer (2005) entitled: "Stress Levels and Adaptability in Parents of Toddlers with and without Autism Spectrum Disorders" published in the Journal of Research and Practice for Persons with Severe Disabilities states that while "...parenting a typically developing child can be stressful, research indicates that parents of children with disabilities are at increased risks of experiencing elevated levels of stress." The reasons for this stress include isolation experienced by these parents due to failure to participate in family and community activities based on the lack of supports that assist these parents and families of children with ASD in participation of normal family activities and community activities. The work of Kenneth J. Pakenham entitled: "Adjustment in Mothers of Children with Asperger Syndrome: An Application of the Double ABCS Model of Family Adjustment" presents a study in which the applicability of the ABCS model of family adjustment is examined toward providing an explanation of the adjustment of mothers in caring for a child with Asperger syndrome. This study involved 47 participants who completed questionnaires. Findings of the study state: "...after controlling for the effects of relevant demographics, stressor severity, pile-up of demands and coping were related to adjustment." (Pakenham, 2008) Additionally findings are stated to "indicate the utility of the double ABCS model in guiding research into parents adjustment when caring for a child with Asperger syndrome." (Pakenham, 2008)
Findings of this brief review of literature in the foregoing proposal for research clearly show that support and assistance to parents and families of children with ASD is critical in these parents and families making the necessary adaptations to live and interact normally in family and community activities.
The conclusions of this brief review are that adaptation methods and techniques are a critical aspect of the practice of the practitioner working with families of children with ASD. families and children
Recommendations arising from this brief review of literature in this subject area indicate that research is needed to identify the primary areas of support for adaptation in families of children with ASD toward the ends of improving and furthering normal family and community participation in these families.
Bellini, Scott and Pratt, Cathy (2006) Early Intervention for Young Children on the Autism Spectrum: Parent's Perspective. IRCA Articles 2006. Online available at http://www.iidc.indiana.edu/irca/education/EarlyIntervention.html
Law, Mary (2006) Autism Spectrum Disorders and Occupational Therapy. Briefing to the Senate Standing Committee on Social Affairs, Science and Technology. Canadian Association of Occupational Therapists. 9 Nov 2006. Online available at http://egfl.net/Teaching/Issues/startingpoints/ASD%20docs/11%20tchng%20Social%20Skills.doc
Benson, Bernadette and Dewey, Deborah (2008) Parental Stress and Needs in Families of Children with Autism Spectrum Disorder. International Journal of Disability, Community & Rehabilitation Volume 7, No. 1. Online available at http://www.ijdcr.ca/VOL07_01_CAN/articles/benson.shtml
Stahmer, Aubyn C. (2007) the Basic Structure of Community Early Intervention Programs for Children with Autism: Provider Descriptions. Journal of Autism Development Disorder.…