Autism on Family\'s Social Participation

¶ … AUTISM on FAMILY'S SOCIAL PARTICIPATION

NECESSARY KNOWLEDGE in OCCUPATIONAL THERAPY

Autism Spectrum Disorder (ASD) is described as a disorder that is characterized as a "class of developmental disabilities which cause severe impairments to a child's communication, their social interactions, and in their play and behavior." (Law,

The impact of autism on the social participation of the family is severe and critically necessary to address so as to enable the autistic child and the child's family members to pursue healthy interaction in community and society both with the family as a unit and separate and apart as individuals with diverse interests as well. Intervention that is early in nature is critically important for young children with autism spectrum disorder and the need for effective early intervention (EI) has featured in legislative priorities conveying the same.

STATEMENT of the PROBLEM

Families of children with ASD often are not involved in community activities and often fail to participate in other activities as do families with children who do not have ASD and are limited to participation due to lack of available resources for integration of family participation of the family with a child with ASD.

RATIONALE

Research study has shown that the failure of families with children with ASD to fully participate in community and family activities is due to the lack of resources and assistance in knowing how they may enjoy normal family activities and community participation and cope with the child with ASD. Simultaneously, research has shown how important family participation and involvement in activities of a normal family and community involvement is for these families in order to avoid depression and isolation from the community. Autism Spectrum Disorder (ASD) impacts: "...at least 60 per 10,000 children under 8 years, or whom 10 to 30 have narrowly-defined autism." (Le Couteur, 2003) it is related that within a normal unit of population of: "...55,000 children under sixteen with 4,000 live births per year, the number on which resource need has been based in this report, an annual incidence of 24 new cases is implied though presentation may be at varying ages. This suggests that there would be considerably more than 250 children (under 16 years) with ASD at any one time in every such local health area." (Le Couteur, 2003)

PURPOSE of the STUDY

The purpose of the study proposed herein is to establish the goals of adaptive occupational therapy for the families of children with ASD.

SIGNIFICANCE of the STUDY

The significance of this study is the additional knowledge that will be added to this area of study and further the supports that will be identified for assisting the family of the child with ASD to fully participate in family activities and community involvement.

METHODOLOGY

The methodology proposed in this study is one of a qualitative nature and involves an extensive review of literature in this subject area combined with a survey/questionnaire of parents of children with ASD which will serve to inform focus group discussions of these parents in which focus group discussions will seek to identify means and methods that might be successful in assisting families of children with ASD in adaptation methods of coping with the ASD child while allowing the families to become fully involved in normal family activities and in normal participation in community activities.

LITERATURE REVIEW

The work of Bellini and Pratt entitled: "Early Intervention for Young Children on the Autism Spectrum: Parent's Perspective" relates that families are often burdened by the responsibility of parenting the child with autism spectrum disorder and oftentimes early intervention is not made accessible leaving the parents of the autistic child struggling in knowing the most appropriate and effective method of assisting in the development of the child. Bellini and Pratt state that these questions have been addressed by the Indiana Resource Center for Autism (IRCA) in a state-wide survey conducted among families with ASD children who are also young children and specifically in this study were ages 2 to 8 years of age with the average age of 5.44 years. (paraphrased) the study's purpose is stated to have been to "gauge the accessibility of services for young children with ASD in Indiana as well as understand family's perceptions of Indiana's programs for young children with ASD." (Bellini and Pratt, 2006)

Bellini and Pratt's report states that the study questions asked included questions such as: (1) What early intervention services are available to children with autism spectrum disorder and their families? (2) Where/How are those services accessed? (3) How are Indiana's early intervention programs succeeding or failing in meeting the needs of children with autism spectrum disorder and their families? (Bellini and Pratt, 2006) This report relates that findings in this study show that "children receiving recreation therapy were perceived to have greater social outcomes." (Bellini and Pratt, 2006) Also reported in the findings is that "opportunities for integration linked positively with social, emotional, cognitive, and speech development, as well as adaptive behavior and overall quality of life." (Bellini and Pratt, 2006) This is stated to be "consistent with the findings of Harrower and Dunlap (2001) who state findings that "students with autism who are included have higher rates of social engagement and interaction, as well as developmentally more advanced IEP goals than their peers in segregated settings. Understanding what services families are receiving, as well as the impact those services are having on the family and child with ASD, is an important step for lawmakers, service providers, and family members as decisions about funding, access, and educational outcomes are made." (Bellini and Pratt, 2006) the offerings of Occupational Therapy to children with ASD and their families include evaluation and treatment of various skills affecting the ability of the child in functioning and learning which include the following:

1) Gross Motor Skills - These "relate to movement of the large muscles in the arms, legs, and trunk, and are needed for activities like running, climbing, jumping, or riding a tricycle"; (Bellini and Pratt, 2006)

2) Fine Motor Skills - These skills are those relating to "movement and dexterity of the small muscles in the hands and fingers, and are needed for activities like picking up small objects, holding utensils, or buttoning a shirt"; (Bellini and Pratt, 2006)

3) Visual Motor Skills - These relate to an individual's movement based on the perception of visual information, and are needed to color within the lines or catch a ball; (Bellini and Pratt, 2006)

4) Handwriting Skills - These are skills in the areas of "writing fluidity, letter formation, letter sizing, letter alignment, and letter/word spacing";

5) Self-Care Skills - These skills include: "daily dressing, feeding, and toileting tasks"; (Bellini and Pratt, 2006)

6) Oral Motor Skills - These skills are the "movement of muscles in the mouth, lips, tongue, and jaw to permit sucking, biting, crunching, chewing, and licking"; (Bellini and Pratt, 2006)

7) Sensory Integration - These skills involve the "...ability to take in, sort out, and respond to the sensory information we receive from the environment, and is especially important in individuals who are under- or over-sensitive to sound, light, touch, noise, etc."; (Bellini and Pratt, 2006)

8) Motor Planning Skills, which involve the ability to plan, implement, and sequence motor tasks such as riding a bike, kicking a rolling ball, or climbing monkey bars; and (Bellini and Pratt, 2006)

9) Neuromotor Skills - These skills "involve the underlying building blocks of muscle strength, muscle tone, and posture. (Bellini and Pratt, 2006)

The study of Bellini and Pratt state findings as shown in the following table relating to Intervention Targets, Occupational Therapy and Sensory Integration Therapy for ASD children and their families.

ASD: Intervention, Occupational Therapy and Sensory Integration Therapy

Occupational Therapy Sensory Integration Therapy

Intervention Targets:

Where did parents hope to see improvement?

72% -- Executive Function

66% -- Social Interaction

64% -- Stereotypical

Behaviors

63% -- Neurological Issues

54% -- Maladaptive Behaviors

53% -- Communication

81% -- Maladaptive Behaviors

80% -- Stereotypical Behaviors

79% -- Neurological Issues

77% -- Executive Function

66% -- Social Interaction

55% -- Communication

Expectations:

Before beginning treatment, how much faith did parents have that the therapy would work?

1% -- Expected no improvement

16% -- Expected minimal improvement

49% -- Expected a moderate level of improvement

34% -- Expected a high or very high level of improvement

2% -- Expected no improvement

30% -- Expected minimal improvement

45% -- Expected a moderate level of improvement

23% -- Expected a high or very high level of improvement

Experience:

How did parents rate the therapy's effectiveness?

88% -- Symptoms improved

11% -- No change in symptoms

1% -- Symptoms worsened

Of those who said their child improved:

16% -- Reported a minimal level of improvement

49% -- Reported a moderate level of improvement

35% -- Reported a high or very high level of improvement

89% -- Symptoms improved

10% -- No change in symptoms

1% -- Symptoms worsened

Of those who said their child improved:

14% -- Reported a minimal level of improvement

51% -- Reported a moderate level of improvement

35% -- Reported a high or very high level of improvement

Source: Bellini and Pratt (2006)

The work of Dr. 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)