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