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