| Based on the U.S. Department of Education's 2002 | | | | dinners may be disrupted or shortened and bedtimes |
| report to Congress on IDEA the number of students | | | | may be interrupted. Sleep deprivation is common in |
| with autism in U.S. schools has increased by 1354% in | | | | both the child with autism and the parents of the |
| an eight-year period from 1991-1992 to 2000-2001 | | | | child. Society reactions can also have a major impact |
| (as cited by the Autism Society of America, 2003). | | | | on family stress and may cause the family to avoid |
| This increase is almost fifty times higher than all | | | | community outings or family events (Autism Society |
| disabilities (excluding autism), which has increased in | | | | of America, n.d.). Families may not go to family |
| the U.S. by 28.4%. From 1991-1992 to 2000-2001 | | | | get-togethers because the child has difficulty |
| school years, the number of students with autism | | | | interacting with others (Autism Society of America, |
| that are being served under IDEA has increased from | | | | n.d.). Families are sometimes embarrassed around |
| 5,415 to 78,749 respectively (as cited by Autism | | | | extended family members and may have difficulty |
| Society of America, 2003). | | | | relating to other family members. |
| According to the Center for Disease Control in 2001, | | | | Another stress for parents is learning about all of the |
| autism affects an estimated 2 to 6 per 1,000 | | | | methods and strategies to teach children with autism. |
| individuals and it is the most common of Pervasive | | | | They must learn about these methods so that they |
| Developmental Disorders (as cited by the Autism | | | | can help to determine an appropriate educational |
| Society of America, n.d.). Based on these statistics, it | | | | placement for their child with autism and so that they |
| is estimated that 1.5 million Americans are believed to | | | | can be active members in the IEP process. There are |
| have some form of autism (Autism Society of | | | | currently many treatment approaches and strategies |
| America, n.d.). Autism has been found to affect all | | | | to teach children with autism. Current methods include |
| races, cultures, socioeconomic statuses, and | | | | Applied Behavior Analysis, Discrete Trial instruction, |
| educational backgrounds (Autism Society of America, | | | | Picture Exchange Communication System, TEACCH, |
| n.d.). This rate of growth in autism not only signifies a | | | | Floortime, RDI, Social Stories, and Sensory |
| need for more professionals to be trained to teach | | | | Integration. Once strategies are determined, using |
| individuals with autism, but the need for increased | | | | some of these methods has potential to reduce |
| training and support for families of children with | | | | family stress and enhance the family's quality of life. |
| autism. Parents of children with autism are coping | | | | Because many children with autism have difficulty |
| with a considerable amount of stress and an | | | | generalizing skills, it is extremely important for parents |
| overwhelming amount of information about the | | | | to carry over the child's skill training from school to |
| disability. Families of children with autism can benefit | | | | the home. Parents can also be effective teachers. |
| from support from professionals, other family | | | | Families that are taught effective behavioral |
| members, and society, in order to manage the stress | | | | intervention strategies to manage challenging |
| effectively. | | | | behaviors, are taught and involved in the functional |
| Parents of children with autism take on many roles in | | | | assessment process, are trained in facilitating |
| their child's education. They must first recognize and | | | | functional communication (both verbal and |
| pursue a diagnosis for their child. Once an accurate | | | | non-verbal), have been found to have greater |
| diagnosis is made, they must find a suitable program | | | | success at home with the child with autism (Moes & |
| and services for their child. Parents need to also act | | | | Frea, 2002). When determining behavior plans, |
| as teachers in the home so that their children learn to | | | | professionals need to take into consideration family |
| generalize skills in the home that they are taught at | | | | routines when analyzing challenging behaviors (Moes |
| school. In order for parents to be effective teachers, | | | | & Frea, 2002). Behavioral interventions are more |
| they need to have specialized knowledge, skills, and | | | | successful and meaningful to families when their |
| information about the efficacy of different treatment | | | | beliefs, values and goals are taken into consideration |
| programs (Educating Children with Autism, 2001). | | | | (Moes & Free, 2002). |
| Because parents are also advocates for their child, | | | | A family centered educational approach may be the |
| they need to have knowledge of special education | | | | most beneficial to a child with autism and their |
| law and the available services. Due to the stress level | | | | families (National Academy Press, 2001). Formal |
| of raising a child with autism, parents need coping | | | | support may come from teachers, IEP team |
| skills (National Academy Press, 2001). According to a | | | | members, doctors, the local education agency |
| study by Gallagher, (as cited by National Academy | | | | representative, and other professionals that treat the |
| Press, 2001), the multiple roles of the parent as | | | | child. Informal support may come through parent |
| teacher, advocate, loving parent, and family member | | | | networking, parent support groups, families, and |
| can be extremely demanding for parents. | | | | neighbors. According to Bristol in 1987, "parents found |
| In 2000 Nissenbaum, Tollefson, and Reese (as cited | | | | a positive relationship between adequacy of social |
| by The National Autistic Society, n.d.), studied the | | | | support, the use of active coping behaviors, and |
| impact of an autism diagnosis on families. They found | | | | family adaptation for parents of children enrolled in |
| that parents actually felt relieved at having an | | | | the TEACCH program" (National Academy Press, |
| explanation for their child's unusual behaviors (National | | | | 2001, p.34). |
| Autistic Society, n.d.). The diagnosis alleviated | | | | Coping with a child with autism is difficult and |
| concerns that they were doing something wrong | | | | stressful for many families. As with the impact of |
| (National Autistic Society, 2000). As with other | | | | socioeconomic status and ethnicity of the parents, |
| parents of children with disabilities, many parents or | | | | there is not yet a lot of research on the stress levels |
| children with autism go through a grieving process | | | | of parents based on the child's cognitive level and |
| after receiving the diagnosis of autism. | | | | communication level. Based on current research, in |
| Based on research, the education of children with | | | | order to cope with the stress of having a child with |
| autism is a source of a great deal of stress for many | | | | autism and to experience gains in their education at |
| families. Research conducted by Holroyd and | | | | school and at home, parents need to learn specialized |
| McArthur in 1976 and by Donovan in 1988 (as cited | | | | skills and teaching methods that can be implemented |
| by the Autism Society of America, n.d.) found that | | | | at home. Successful collaboration and training with |
| parents of children with autism experience greater | | | | professionals working with the child with autism has |
| stress than parents of children with mental | | | | the capability of reducing family stress and an |
| retardation and Down Syndrome. This stress may be | | | | increase in the child with autism's communication, |
| a result of the maladaptive and antisocial behaviors a | | | | socialization, cognitive, adaptive skills and a reduction |
| child with autism may exhibit (Autism Society of | | | | in maladaptive behaviors in the home environment. |
| America, n.d.). Because individuals with autism often | | | | Professionals working with students with autism must |
| have difficulty expressing even basic wants or needs, | | | | include the parents as advocates in the IEP process, |
| parents may feel frustrated when they are unable to | | | | functional behavior assessments, and behavior |
| determine the child's needs (Autism Society of | | | | intervention plans. |
| America, n.d.). The child with autism may exhibit | | | | Professionals must provide opportunities for parents |
| frustration through self-injurious behaviors, | | | | to be trained in teaching methodologies used at the |
| aggression, or tantrums that threaten the safety of | | | | school. Professionals must also consider themselves a |
| others (Autism Society of America, n.d.). Parents may | | | | source of support for families of children with autism |
| feel that the stereotypic or self-stimulatory behaviors | | | | and be knowledgeable about special education law, |
| (ie: hand-flapping, tapping, lining things up, | | | | treatment methods and scientific research. As a |
| perseveration on an object), of their child with autism | | | | teacher of young children with autism, I have |
| are strange and interfering with functioning (Autism | | | | witnessed first hand the benefits of conducting |
| Society of America, n.d.). Because children with | | | | parent trainings and support groups, whether they |
| autism usually have severe deficits in social skills, such | | | | are on a group basis or an individual basis. Based on |
| as playing appropriately with peers, parents may find | | | | parent feedback, parent trainings and support groups |
| themselves stressed with finding appropriate leisure | | | | are extremely beneficial to those that attend, and |
| activities for the child at home (Autism Society of | | | | most parents express that there is never enough |
| America, n.d.). Some children with autism have | | | | time to talk with the teachers and other |
| difficulties sleeping and may only eat limited food | | | | parents--there is always a desire to learn more and |
| items, which causes another source of struggle for | | | | for more opportunities to collaborate. |
| parents (Autism Society of America, n.d.). Family | | | | |