Coping With Autism-Support For Families
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Author: Christine Dugan 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.
About The Author: Christine Dugan works in the special
education field and is a contributing author to the health
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