Information Sheet

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Charting Autism: Current Research to Inform Caregivers
Improving outcomes

Parents can be trained to effectively incorporate therapy into the family routine
Children diagnosed with autism benefit greatly from interventions that are initiated early and occur
intensely and frequently. Parents may be in an ideal position to deliver such services. In this study,
researchers recruited eight families with children with autism between 10 and 36 months old to participate
in 12 weekly one-hour sessions. The sessions trained them to incorporate Applied Behavior Analysis (ABA)
techniques into their regular family routine. Parents were taught the correct methods to implement the
ABA techniques, and all but one parent was able to master the intervention material by the sixth training
session. After incorporating the ABA techniques into the family routine, children’s number of spontaneous
vocalizations increased, and gains after the parent training sessions ended. The data suggest that parents
can be trained to effectively integrate ABA into the family routine, and such interventions may help young
children with autism develop the building blocks of communication.

Vismara, L. A., Costanza, C., & Rogers, S. J. (2009). Can one hour of therapy a week lead to lasting changes
in young children with autism? Autism, 13, 93-115.

Task and activity transitions for children with ASD best managed with forewarning
About a quarter of a young student’s day is spent transitioning from one activity to another. Coping with
this amount of transition time daily can be stressful for children with ASDs. Researchers reviewed previous
studies to identify optimal methods for teachers to manage transition periods. Most effective were auditory
cues (e.g., “It’s time to go to lunch now.”), behavioral momentum (delivering a task with high probability of
compliance with a task with low-probability. e.g. “Give me five” followed by instruction to transition
outside for recess), pictorial cues (e. g. showing the child a card with a picture of the playground to indicate
a transition to recess), activity schedules (a written or pictorial layout the activities and transitions for the
day), and video priming (allowing the child to watch a video of an upcoming event). The most effective
methods provide forewarning about the upcoming transition, allowing the child to prepare him or herself
for changing tasks and avoiding the stress associated with demands for a sudden shift in attention.

Sterling-Turner, H. E., & Jordan, S. S. (2007). Interventions addressing transition difficulties for
individuals with autism. Psychology in the Schools, 44, 681-690.

Parents report that the benefits of in-home therapy outweigh the challenges
Previous research demonstrates the positive impact of early intensive behavioral interventions on children
with ASD. This study investigated the impact of such programs on the family routine and dynamic.
Researchers interviewed 53 parents of children with autism who received two years of early intensive
behavioral intervention in the home to explore how the intervention impacted family life. Overall, parents
were satisfied with the intervention and observed benefits for themselves, their child, and other family
members. Parents also identified challenges. For example, having a therapist in the home caused a lack of

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privacy, and the family’s responsibility for creating teaching materials was an often-named source of stress.
Nonetheless, over 75 percent of the parents interviewed chose to continue the intervention for extended
amounts of time. They stated that the benefits to their child and their family were worth any added
stressors to the family.

Grindle, C. F., Kovshoff, H., Hastings, R. P., & Remington, B. (2009). Parents' experiences of home-based
applied behavior analysis programs for young children with autism. Journal of Autism and Developmental
Disorders, 39, 42-56.

Stress

Problem behavior highly associated with maternal stress

Researchers found that mothers of preschool-aged children with ASD report higher levels of stress and
psychological distress than mothers of children with other types of developmental delays. Fifty-one
mothers of preschool-aged children with ASD and 22 mothers of children with developmental delay
without ASD participated in this study. Researchers explored how problem behavior and daily living skills
impact maternal stress levels.

Children with problem behaviors such as agitation, social withdrawal, hyperactivity, non-compliance, and
inappropriate speech were more likely to have mothers reporting high levels of stress and psychological
distress, defined as symptoms of depression and anxiety, than mothers of children with developmental
delay Researchers suggest that mothers look for support and clinical services that reduce their child’s
problem behavior to reduce their own levels of stress and psychological distress.

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., Abbot, R. (2009). Parenting stress and
psychological functioning among children with autism and developmental delay. Autism, 13, 375-387.

Mothers and fathers of children with ASD report similar levels of stress
Researchers studied 108 parents (54 mothers and 54 fathers) of young, newly diagnosed children with ASD
to examine parental stress. Thirty three percent of mothers and 17 percent of fathers reported depressive
symptoms. Moms and dads also reported similar amounts of stress and anxiety. Many other studies report
that mothers of children with ASD have high level of stress, but this study demonstrates that both mothers
and fathers experience stress, particularly around the time of diagnosis. Different child behaviors triggered
stress in mothers and fathers. Social interaction skills and parent-child relationship difficulties predicted
stress in fathers, while mothers were affected by their child’s difficulty with self-regulation activities like
sleeping and eating.

Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism
spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental
Disorders, 38, 1278-1291.

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Maternal wellbeing increases as a child with ASD ages

Significant events in a child with ASD’s life may lead to improvements in maternal wellbeing. Researchers
studied 140 mothers with a child diagnosed with ASD to assess whether changes occurring in child
behavior and circumstances impact maternal wellbeing and the mother’s relationship with their child.
Events associated with improved maternal wellbeing include declines in a child’s behavior problems, the
child being prescribed psychotropic medication, and the child graduating from high school. And generally
speaking, maternal anxiety lessens and mother-child relationships improve as the child enters into
adolescence. Researchers attribute this change to the typical decrease in behavior problems in adolescence.
This study should offer hope to caregivers who are entering into transition times of their child’s life.

Lounds, J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. T. (2007). Transition and change in adolescents
and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental
Retardation, 112, 401-417.

Social Support

Active coping, such as seeking social support, is more helpful to parents of children with
ASD than passive or avoidant coping
Using a family network of support is a large part of how families cope with the stress of caring for a child
with ASD. Researchers collected data from 55 parents of children with ASDs to measure parents’ ability to
acquire social support from others. Sixty eight percent of parents in the study looked to close friends and
family members for support. Ninety three percent of participants reported that they seek out other families
caring for a child with ASD for support and 80 percent reported they sought out services from autism-
specific organizations. Using social support and keeping a positive outlook were key factors in parent
coping and healthy family functioning. Nonetheless, parents also report using passive coping techniques,
such as waiting for the problem to go away, and avoidant techniques, such as feeling they don’t have the
ability to solve problems. Passive and avoidant coping strategies can reduce stress in the short-term, but
not over time.

Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with
autism. Journal of the American Academy of Nurse Practitioners, 19, 251-260.

Family Relationships

Sibling relationships where one sibling has ASD tend to stay close over time
Sibling relationships where one sibling has ASD tend to stay close throughout their lifetimes. In contrast,
relationships where neither sibling has a disability tend to weaken through adolescence and young
adulthood and then strengthen into adulthood. Even though the trend is for sibling relationships where one
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sibling has ASD to stay close through their lifetimes, there are some differences when it comes to family
size and gender.

Researchers recruited siblings from 406 families and collected data from adult siblings (19 and older) and
adolescent siblings (12-18 years old). In families with a sibling with ASD, adolescent siblings reported
getting greater support from friends and families than adult siblings. And adolescents from larger families
reported greater satisfaction in their sibling relationship. Researchers believe these findings stem from a
larger family’s ability to share caretaking roles. Brothers of sisters with ASD showed the least engagement
in shared activities while sisters of sisters with ASD showed the most. Researchers fear this sets up females
with ASD for social isolation as they grow older if their only sibling is a brother. The researchers suggest
families should seek activities, interventions, and programs that focus on maintaining sibling relationships
through the lifetime.

Orsmond, G. I., Kuo, H.Y., Seltzer, M. M. (2009). Siblings of individuals with an autism spectrum disorder:
Sibling relationships and wellbeing in adolescence and adulthood. Autism, 13, 59-80.

Grandparents of children with autism face unique stressors

Grandparents of children with autism may be a unique population compared to grandparents of children
with other developmental disabilities because of the different challenges and stressors they face. For
example, grandparents may experience sadness, depression, and frustration stemming from the difficulties
in communication they face with their grandchild with autism. Nonetheless, grandparents provide a crucial
role in reducing the stress of caregiving parents by providing emotional and instrumental support, such as
child care, running errands, and cooking meals. Grandparents understand their role better when parents
clearly states their expectations of them. The researchers also suggest that grandparents join support
groups specifically tailored to grandparents, and be actively involved advocating for their grandchild’s
needs to better solidify their role.

Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education,
practice, and policy. Educational Gerontology, 33, 513-527.

Transitions

Aspects of colleges that create a supportive learning environment for students with ASD
Adolescents with high-functioning ASD who receive tailored support and resources and a detailed
transition plan can succeed in college. This article presented research-based recommendations for students
with ASD who plan to transition into college after high school.
Size of the school, size of classes, and receptiveness of school to students with disabilities were the main
areas that a student with ASD should examine to determine his or her fit with a college. Smaller schools will
offer the student a more personalized experience, while a larger school will perhaps offer the student more
opportunities to find a niche socially and vocationally. Smaller schools are also more likely to offer smaller

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classes where greater accommodations can be made for a student with ASD. Researchers urge potential
students to examine school factors to find the best fit for his or her educational and social needs.

VanBergeijk, E., Klin, A., & Volkmer, F. (2008). Supporting more able students on the autism spectrum:
College and beyond. Journal of Autism Development and Disorders, 38, 1359-1370.

Students with disabilities generally unaware of the contents and purpose of their transition
plan
The transition planning process is important to children with ASD and their families. This study examined
student knowledge and perceptions of the transition planning process among 103 students receiving special
education services. The students surveyed had mild to moderate disability conditions such as autism,
learning disability, speech, and other health impairments. Less than 11 percent of the students knew the
purpose of their transition plan. Researchers asked the students to state the goals on their transition plans
and then compared student responses to the students’ plans. Fifty-five percent of student’s responses
matched what was on their plans. The authors suggest that students should be more involved in their
transition planning process to ensure understanding of its components and importance.

Williams, K. L., & Lynch, P. S. (2007). Student knowledge and perceptions of individual transition planning
and its process. The Journal for Vocational Special Needs Education, 29(3), 13-21.

Job programs may increase cognitive abilities in adults with ASD

Supported job programs may have positive effects on cognitive abilities in people with ASD. Researchers
assessed the cognitive abilities of 44 adults with ASD who were either enrolled in a supported job program
or unemployed across a 30-month period. The adults in the job program worked with job coaches in
service-oriented jobs such as retail, recycling, laundry, and agriculture. At the beginning of the assessment
period, the cognitive abilities of the two groups did not differ. After 30 months, adults with ASD who were
enrolled in the job program showed significantly higher improvements in cognitive abilities than adults
who were unemployed.

Garcia-Villamisar, D. & Hughes, C. (2007). Supported employment improves cognitive performance in

adults with autism. Journal of Intellectual Disability Research, 51(2), 142-150.

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