Based on American Education 2002 report to Congress on the idea of the number of students with autism in US schools has increased by 1354% in the eight-year period from 1991-1992 to 2000-2001 (as cited by Autism Society of America, 2003). This increase is almost fifty times higher than all disabilities (excluding autism), which has increased in the US 28.4%. From 1991-1992 to 2000-2001 school years, the number of students with autism that are being served under the idea has increased from 5.415 to 78.749 respectively (as cited by Autism Society of America, 2003).
According to the Center for Disease Control in 2001, autism affects an estimated 2 to 6 per 1000 persons and is the most common pervasive developmental disorders (as cited by Autism Society of America, nd). Based on these figures, it is estimated that 1.5 million Americans are believed to have some form of autism (autism Society of America, nd). Autism has been shown to affect all races, cultures, socioeconomic status and education (Autism Society of America, nd). This growth in autism not only reduces the need for more professionals to be trained to teach individuals with autism, but the need for increased training and support for families of children with autism. Parents of children with autism are dealing with a considerable amount of stress and an overwhelming amount of information on disability. Families of children with autism can benefit from support from professionals, other family members and the community, in order to manage stress effectively.
Parents of children with autism take on many roles in their children’s education. They must first recognize and pursue the diagnosis for their child. Once accurate diagnosis is made, they have to find the appropriate programs and services for their child. Parents also need to work as teachers in the home so that their children learn to generalize skills in the home that they are taught in school. In order for parents to be effective teachers, they need to have specialized knowledge, skills, and the efficacy of different treatment programs (educating children with autism, 2001). Because parents are also advocates for their child, they need to have knowledge of special education laws and is available. Due to the stress level of raising a child with autism, parents need to address skills (National Academy Press, 2001). According to research by Gallagher, (as cited by National Academy Press, 2001), but many roles a parent as teacher, advocate, loving parent, and family can be very challenging for parents.
In 2000 Nissen Baum, Tollefson, and Reese (as cited by The National Autistic Society, ed), studied the effects of autism diagnosis on families. They found that parents actually felt relieved with an explanation of unusual behavior of the child (National Autistic Society, nd). The diagnosis alleviated concerns that they were doing something wrong (National Autistic Society, 2000). As with other parents of children with disabilities, many parents or children with autism go through a grieving process after receiving a diagnosis of autism.
Based on research, education of children with autism is a source of great stress for many families. Research conducted by Holroyd and McArthur in 1976 and by Donovan in 1988 (cited by Autism Society of America, nd) found that parents of children with autism experience greater stress than parents of children with mental retardation and Down syndrome. This stress can be the result of maladaptive and antisocial behavior of a child with autism can show (autism Society of America, nd). Individuals with autism often have difficulty expressing even basic wants or needs, parents may feel frustrated when they are unable to determine the child’s needs (autism Society of America, nd). A child with autism may show frustration through self-injurious behaviors, aggression, or tantrums that threaten the safety of others (autism Society of America, nd). Parents may feel that the stereotypic or self-inducing behavior (ie hand flapping, tapping, lining things up, perseveration per share), their child with autism are strange and disturbing activities (autism Society of America, nd). Because children with autism usually have severe deficits in social skills, such as playing appropriately with peers, parents may find themselves stressed with finding appropriate leisure activities for the child at home (autism Society of America, nd). Some children with autism have difficulty sleeping and can only eat limited food items, which causes another source of struggle for parents (autism Society of America, nd). Family dinners may be disrupted or shortened and Bedtime may be interrupted. Insomnia is common both in children with autism and parents of the child. Community reactions can also have a major impact on family stress and may cause the family to avoid community outings or family events (autism Society of America, nd). Families can not go to family get-togethers because the child has difficulty interacting with others (Autism Society of America, nd). Families are sometimes embarrassed around extended family and may have difficulty relating to others in the family.
Another stress for parents is to learn about all the methods and strategies to teach children with autism. They must learn about these methods so that they can help to determine the appropriate educational placement for their child with autism so that they can be active participants in the IEP process. There are now many treatment methods and strategies to teach children with autism. Current methods are applied behavior analysis, discrete Trial teaching, Picture Exchange Communication System, TEACCH, Floor Time, RDI, Social Stories and Sensory Integration. When procedures are determined by some of these methods tends to reduce family stress and improve the quality of family life. Because many children with autism have difficulty generalizing skills, it is extremely important that parents have the child’s skill training from school to home. Parents can also be effective teachers.
Families that are taught effective methods of behavioral therapy to manage challenging behaviors, are taught and participate in active evaluation process, are trained to facilitate functional communication (both verbal and non-verbal) have been shown to have greater success at home with baby with autism (moes & Freat, 2002). When determining behavior plans, professionals need to take into account the family’s routines when analyzing challenging behaviors (moes & Freat, 2002). Behavioral interventions are more effective and meaningful to families when their beliefs, values and objectives are taken into account (moes & Free, 2002).
family learning center approach can be most beneficial to children with autism and their families (National Academy Press, 2001). Formal support may come from teachers, IEP team members, doctors, the local education agency representatives and other professionals who treat the child. Informal support may come through parent networking, parent support groups, families and neighbors. According to Bristol in 1987, “parents found a positive relationship between adequate social support, the use of active coping behaviors, and family adaptation for parents of children enrolled in the TEACCH program” (National Academy Press, 2001, p.34).
Responding to a child with autism is difficult and stressful for many families. As with the effect of socioeconomic status and ethnicity of parents, it is not yet a lot of research on the stress levels of parents based on the cognitive level and communication level of the child. Based on current research, in order to deal with the stress of having a child with autism and to experience success in learning at school and at home, parents need to learn specialized skills and teaching methods that can be implemented at home. Effective collaboration and training with professionals working with a child with autism has the ability to reduce family stress and an increase in child with communication, socialization, cognitive, adaptive skills autism and a reduction in maladaptive behaviors in the home environment. Professionals working with students with autism will include parents as advocates in the IEP process, functional food behavior and behavior intervention plans.
Experts will provide an opportunity for parents to be trained to teach the methodology used in the school. Experts will also consider themselves a source of support for families of children with autism and be knowledgeable about special education law, treatment methods and scientific research. As a teacher of young children with autism, I have witnessed first-hand the benefits conducting parent trainings and support groups, whether they are on a consolidated basis or an individual basis. Based on parent feedback, parent training and support groups are very useful for those involved, and most parents express that there is never enough time to talk with teachers and other parents – there is always a desire to learn more and more opportunities to work .