“The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder”

Article written by Stephanie A. Hayes and Shelley L. Watson

Published online July 13 2012

Reviewed by Chelsea Graham

This article is a ‘meta-analysis’ of studies. A ‘meta-analysis’ is the statistical procedure for combining data from multiple studies. When the treatment effect (or effect size) is consistent from one study to the next, metaanalysis can be used to identify this common effect. The authors reviewed studies about Parenting Stress in parents of children WITH ASD and parents of children WITHOUT ASD.

Prior to explaining their methods of search and selection criteria for the studies included in this meta-analysis, the authors defined ‘Parenting Stress’ and summarized the research regarding the impact of ASD on Parenting Stress.  The discussion detailing the definition of stress raised interesting ideas. Stress results from the interaction of a family and their environment. When stressors occur, a family will use their existing coping mechanisms in attempts to return the family to a functional place.  If their coping mechanisms are not sufficient, the outcome is stress.

Why do a meta-analysis? The authors gave several rationale for completing a systematic review of the parenting stress literature comparing families of children with autism to children with typical development or those with other disabilities.  Firstly, it has not been done. Secondly, it can provide researchers with guidance for where further research is needed. Thirdly, to summarize the variability among the outcomes of stress as reported by families. And fourthly, to answer questions about the magnitiude, variability, and generalizability of findings.

This meta-analysis selected only studies that measured parental stress, and not depression. The included studies used the following established measures of parenting stress: Family Impact Questionnaire, Questionnaire on Resources and Stress (QRS) and Parenting Stress Index (PSI).

After selecting the studies to include in the analysis, the effect size was calculated. The effect size is an indicator of the strength of the relationship between two outcome variables and allows for comparison of measures that employ different scales.  The effect size was calculated comparing the Parents of Children with ASD and the comparison group (typically developing children or those with other disabilities). Mathematical equations were used to establish effect sizes for each study, so that the outcomes of the studies could be compared.

Results of the Meta-Analysis:

In comparing outcome measures and effect size of numerous studies regarding  parenting stress among parents of children with ASD vs parents of typically developing children, the authors concluded there is a ‘true difference between the experience of parents of children with ASD in comparison to those with children who have typical development on comprehensive measures of parenting stress,’ AND there is also a true difference between ASD parents in comparison to parents of children with other disabilities.

“The overall effect size calculated was large,” and “suggests that parenting stress in families with a child diagnosed with ASD is a significant experience that warrants attention and intervention.”

Suggestions for further research were proposed by the authors. Not many studies differentiated between the different stress experiences of fathers vs mothers of children with ASD. Research should focus on differentiating the levels of ASD and the reported stress for each level. Often children with ASD have co-morbid conditions, could these conditions be affecting the stress levels?


My initial reaction to reading this article was less about the content of the analysis, and more related to the EFFORT it took to read this type of research. I needed to reset my brain back to my grad school days when I was a bit sharper, and in the practice of interpreting academic language. After preparing myself for the rigors of reading and interpreting the data, I was able to make connections between the results of the studies and my professional experiences.

In response to the content and results of the meta-analysis, I’m not surprised with the outcome. Providing speech therapy to a child with ASD is frequently stressful, I had no doubt that parents would report high levels of stress.

This meta-analysis was an important review because of the conclusions it was able to draw for further research. We all know parents of children with ASD are stressed, but HOW CAN WE HELP? That’s the research and evidence based practice we need.


Tech Tuesday

Aimee Burton shares:

Since receiving my iPad a few months ago, I have been exploring apps and trying to figure out the best way to incorporate it into my therapy sessions. One of the best ways I have found to use it in therapy is to use it as an AAC device for some of the kids in my MSD room who are non-verbal. The Yes/No app by I Can Do Apps, offers a quick way to introduce and work on yes/no questions with voice output buttons. One student has made great progress using the Yes/No app when paired with preferred and non-preferred items.

Another app I have come to love and use daily is Sounding Board by ablenet. Being able to quickly create voice output pictures to fit a child’s need in the moment has been a game changer during therapy and it is one of the easiest AAC apps I’ve ever used. It has a variety of pre-programmed boards to choose from and it is very easy to create your own in a matter of minutes. Sounding board has become my go-to app to create meaningful voice output boards to go with books, recipes, games, and pretty much any other activity I have going on.

I have also found that using the iPad as a motivator is very useful. One of my students absolutely loves watching videos of horses and he currently uses a static 8 cell device. Another student loves to watch Kidz Bop videos and he uses three step by step switches with core vocabulary. They have both been very successful in learning and using new core vocabulary when they know they will get to watch one of their favorite videos for a minute. They have both become well versed in using words like “on”, “off”, “more”, “all done”, “different”, and “help”. It’s amazing how hard they will work when technology is involved!


This is an all call for anyone who is willing to share ideas or strategies that have been helpful! PLEASE take the time to do a quick blog post to share. I have received feedback from so many of you indicating that you appreciate the shared ideas, but we all have to be willing to share! If you have an idea or thoughts, let me know!!

Interdisciplinary Assessment of Young Children with Autism Spectrum Disorder

Patricia A. Prelock, Jean Beatson, Brooke Bitner, Carri Broder, Amy Ducker

Reviewed by: Lauren Taylor

This article discusses an interdisciplinary assessment model originally developed and implemented in Vermont (Vermont Rural Autism Project (VT-RAP)) that focuses on family as a key component of evaluating and treating children with Autism Spectrum Disorder. The 3 key frameworks of this model include: Family Centered Care, Cultural Competence, and Strengths Perspective. The steps for the assessment process are as follows: (1) assignment of an assessment coordinator, (2) intake, (3) preassessment planning meeting, (4) assessment, (5) postassessment planning meeting, (6) report writing, (7) community follow-up meeting, and (8) resource notebook development.

Family Centered Care focuses on collaboration of individuals, families, and community as well as school-based providers, for program development, professional education, and service delivery. It’s centered around the notion that quality collaboration and Family Centered Care can be achieved by treating everyone with respect, communicating and sharing information with families in ways that are useful and affirming, and recognizing that all children and families have strengths. Cultural Competence allows professionals to involve families in ways that are meaningful through making an effort to recognize, understand, and respect cultural differences. This may include professionals engaging in training to increase the recognition of their own cultural beliefs and biases and reflecting on understanding of differences and integrating this understanding into the assessment process. It is important to bring those differences to light and find common ground among all participants. The Strengths Perspective focuses on the fact that all people and families have strengths. It is important for us as professionals to acknowledge the pain and challenges and work with families to determine strengths that will help build a bridge to solutions and healing. The Strengths Perspective fosters a trusting relationship where helpgiving is family directed and occurs in natural environments with natural supports (to the greatest extent possible). All types of knowledge should be valued and it’s important to recognize the strengths in children and their families and build on those strengths when planning intervention.

Once the framework is understood, the assessment process begins with the assignment of an assessment coordinator, who is responsible for facilitating the elements of the assessment process. Intake includes a face-to-face meeting in a location of the family’s choosing to gather pertinent information on the child and family. This information helps the team to understand the family’s value and belief system better and to collaborate with the family to determine its priorities. The preassessment planning meeting is an opportunity for the interdisciplinary team, community team members, and family to collaborate on an assessment plan so that everyone shares a common understanding of the goals of the assessment and related activities. The assessment follows the plan developed at the preassessment meeting and should occur in environments that are natural to the child (home, school, daycare, etc) and include observations and interactions, interviews with family and community providers, and thorough record reviews. The postassessment planning meeting includes all members and is designed to review assessment results and brainstorm key recommendations to address the priority needs of the child and family. After the postassessment planning meeting, the team will develop a working draft of reports that will be reviewed with family and community providers for accuracy and assures that questions raised have been answered. The community follow-up meeting is held to review the final report and create action plans for implementing the recommendations. Lastly, a resource notebook is developed with appropriate materials for the family and community providers to increase their knowledge of the diagnosis, intervention strategies, and available community contacts.

The model is designed to include the family and community based providers every step of the way. When focus is put on family strengths and the invaluable knowledge that families can provide about the lives of their children, it creates an environment where everyone can succeed.

Reflection: I chose this article because of its relevance to my work at the diagnostic center. So often I find myself going through the motions and just trying to get things done, rather than taking the time to give the families perspective the attention it deserves. When we have so much on our plates, and are constantly going through the motions of ‘meet, test, write report, meet’ it’s easy to get into the habit of gathering the necessary information to make ends meet, which often times is not nearly as valuable as gathering the information to address the primary concerns of families and caregivers. This study shows that when we put in the extra time and work to gather this information, it can pay off exponentially in the end. By including families and their concerns/perspectives throughout the entire process, they become more involved/receptive to interventions and carrying over strategies and implementing the work we are doing at home and in the everyday lives of their children. Not only this, but the framework provided in this process helps to create an environment where everyone feels heard and respected, and that is an environment where everyone wins, especially the child. As we know, only so much of what we do can be effective without the help and involvement of people outside the walls of the school building.

The impact of behavior problems on caregiver stress in young people with autism spectrum disorders

  1. Lecavalier, S. Leone & J.Wiltz

Reviewed by: Aubrey Apel

The article began with a statement about stresses, including financial burdens and restrictions in social activities, experienced by parents of children with ASD. Similar to an article previously discussed in this PD session, this article stated that parents of children with ASD tend to experience more stress than parents of children with other disabilities. Not surprisingly, the severity of autism is “positively associated with parental stress.” The major factor associated with stress was behavior problems; the article stated that the relationship between behavior issues and parental stress has “received little attention” in regards to the ASD population.

Similarly, the article addressed teacher stress associated with students with ASD. Apparently little to no research has been completed to address these relationships either. This was surprising to me, but maybe because that has been the focus of our article review thus far. My only speculation is that perhaps the majority of research has been focused on the children themselves and not the individuals with whom they interact. As a school-based speech language pathologist, this seems crazy to me as I feel like I am constantly considering the child’s environment, especially those individuals around them, when planning therapy.

In the article, a study was referenced, which included children with ASD, that stated emotional exhaustion was found among teachers and teaching assistants who worked in special education schools. Approximately 20-40% of regular education teachers report teaching as a “highly stressful” profession. Well, of course! I wish other professionals would read articles like these. Maybe the statistics would highlight the stresses of working with these children and they would realize why teachers need a summer break! Can you imagine what the numbers may look like if they took a poll among special education teachers and related services providers?

The aim of the article was to examine relationships of children with ASD on parents AND teachers. The article claimed, to the best of their knowledge, that this was the first study to include both parents and teachers. They predicted, based on other research studies found, that behavior, as opposed to level of functioning, would be the biggest stressor on these adults.

Interesting study facts: Participants included parents and teachers of 293 adolescents with ASD (83% male, 93% Caucasian); 86% of parent ratings were provided by mothers; IEP identified disabilities: 69% autism, 12% preschooler with a disability, 12% other (OHI, multiple disabilities, 8% missing information; Average age of parents 39.9 years; 48% of parents were college graduates; Average age of teachers 37.5; average teaching experience was 10.2 years

The parents completed “The Parental Stress Index-short Form, which rated items from ‘strongly agree’ to ‘strongly disagree’. The teachers completed “The index of teaching stress”, in which they rated 90 items on a five-point scale from ‘never distressing’ to ‘very distressing’. It was interesting to see examples of items included in the teacher rating scale. The examples given were as follows: “This child does things that bother me a great deal”; “Having this student in my class is frustrating”; “I do not enjoy teaching this child.”

The article referenced another study in which the “Nisonger Child Behavior Rating Form” was used in 37 school districts across Ohio. The goal of this project was to “identify variables associated with successful school models for students with ASD.” I thought this was an interesting study to include, because not only are the authors considering the effects on parents and teachers, but they are also examining them in relation to the school setting. Different packets, for teachers and parents, were mailed to the schools. However, the parent and teacher rating scales contained 85% common items. Interesting findings from the school-based study: For the parents- Parental age, education level, familiarity with ABA and ASDs, child’s gender and chronological age were not statically associated with stress. The most statistically significant findings were that of conduct problems on parents stress. For the teachers- teacher’s age, years of experience, length of time they knew the student, and familiarity with ABA, and child’s gender were not associated with stress levels, However, familiarity with ASDs and chronological age was associated with stress for the teachers. Similar to the parental findings, the most statistically significant correlations was find in the ‘conduct’ area.

In conclusion, these studies show that parent and teacher ratings indicate a clear association between behavior problems in children with ASD and stress levels. Therefore, their original hypothesis was supported. The findings indicate that although these individuals do not always agree on the absolute presence or severity of behaviors, overall, behavior problems are the main sources of stress for parents and teachers caring for children with ASD.


Tech Tuesday

Allison Forrester shares:

I am thankful for the generous donation and the opportunity to be one of the SLPs in JCPS to use one of the iPads. I did not have a personal iPad or tablet to use, so this has been great! Some of the students on my caseload are Deaf and the iPad has made it easy to look up images to accompany vocabulary words. I have also downloaded some free language and articulation apps to use in therapy sessions. Some of the free apps that I have used are: Abitalk Reading Comprehension; Super Duper WH Questions; Category Therapy Lite; Cardstack Sentences; Picture Dictionary; Describe It To Me. The Tech Tuesday Blog has also provided ideas of how to use the iPad and free apps to try out. Technology adds that extra incentive in therapy sessions for students. I feel fortunate to have had the opportunity to use the iPad this year and I hope to have the opportunity next year as well.


Honoring MLK

A throwback (that has a throwback from the previous year as well!) can be found here, just incase you need a last minute therapy idea for today! What types of activities did you (or your school as a whole) do to honor and learn about MLK this week in advance of the holiday on Monday?

The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family

By: Rao, Patricia A. and Beidel, Deborah C.

Discussed by: Laura Woodring

The author’s purpose for this article was to explore the impact of childhood sensory integration disorder on children with autism and their family’s life and routines. The author found that research shows significant impact on the families, both in and out of the home. Families must plan and adjust routines to anticipate and accommodate the sensory dysregulation patterns and associated behaviors. Professionals that work closely with these families would benefit from understanding the effect of sensory integration disorders on the overall mental and physical functioning of the family unit.

Autism spectrum disorders impact approximately 1 in 110 children, families and siblings. Studies were cited that document parent reports of high levels of stress and burden that impact all forms of family life. Challenging behaviors can be related to poor sensory modulation such as self- stimulation, avoidance behaviors, sensory seeking behaviors, and tuning- out behaviors (not responding to their name or other social cues). These behaviors are often paired with a degree of perseveration, over- focus of attention, and exceptional memory for selective material. The author indicates that literature substantiates that sensory- related behaviors in individuals with ASD occur in high frequency, in specific patterns, and have an impact on behavior and learning. Family routines are used to organize activities, maintain cultural beliefs and values, and provide stability in everyday life. Children with autism tend to have ritualistic behaviors that interfere with participation in daily routines. Lack of flexibility with their affected child often requires a family to over- compensate in turn.

This particular study examined how families orchestrate family routines as a way to provide support to the child with autism and sensory processing disorder. Every parent participant reported routines planned around their child with ASD. Six main themes emerged from the data: flexibility, familiar space versus unfamiliar space, difficulty completing family activities, impact on siblings, the need for constant monitoring, and the importance of developing strategies to improve participation for the family.

Overall, the study found that the child’s sensory processing difficulties influenced family routines and participation in activities, and that these sensory behaviors were an important consideration when evaluating the child and family’s health and well- being. The child’s needs greatly impacted the family, as they dictated the activities in which and how the family participated and necessitated that the parents create strategies to develop routines within the family to adapt. The findings of this study highlight the importance of consideration of family routines, activities and coping strategies when working with families affected by autism. Findings also identify specific areas that may be problematic for families and should be considered when planning interventions. Professionals working with children with autism should recognize that each child will have individual sensory needs and behaviors, and analyzing sensory aspects could potentially improve the family’s participation for home and community activities.

Scholarly Article Study

I chose the article THE IMPACT OF CHRONIC CHILDHOOD ILLNESS ON FAMILY STRESS: A COMPARISON BETWEEN AUTISM AND CYSTIC FIBROSIS for a very personal reason. My sister has a child with Cystic Fibrosis who is currently 26 years old. I have been raising money and awareness to support CF with my family for the past 25 years or so! (No need to do the math to figure out my age, lol) In addition, my oldest niece has a daughter diagnosed with Autism who is 5 years old. Due to this unique situation, I know first-hand the impact that both of these chronic disorders have placed our extended family. Also, my niece and sister have shared information and even asked for my opinion in regards to various topics faced in both situations.

This study compared different patterns of stress reported by mothers of children in 3 groups. The 2 clinical groups were mothers of children with cystic fibrosis and mothers of children with autism. The 3rd group was the control group which consisted of mothers of typical developing children. Research was collected via completion of the Questionnaire on Resources and Stress Short Form (Holroyd & Guthrie, 1986). This form looks at the impact the illness has on financial, social, personal, somatic and behavioral stressors.

Spoiler Alert: Families in the clinical group reported significantly more stress than the control group as expected. Also, the Autism group reported a greater amount of family stressors than the Cystic Fibrosis group. Increased levels of stress on 6 out of the 11 scales were significantly higher than the control group for the parents of autistic children where only 3 out of the 11 scales were significantly higher for those parenting children with a CF diagnosis. Families with an autistic child reported concerns with dependency, physical limitations, cognitive impairments, child placing limits on family opportunities and the caregiver being plagued with the idea of a permanent illness which requires lifetime care. Again physical limitations and lifespan care were identified as stressors with parents of children with CF. Additionally, the heaviness of dealing with the fact that your child has a terminal illness and limited lifespan was significantly higher with those mothers dealing with their child’s diagnosis of cystic fibrosis. Also for this group, the physical limitation concerns for their child were significantly higher than the other 2 groups due to the medical issues CF may cause related to pancreatic, gastrointestinal, hepatic and respiration functions as well as reproductive tract abnormalities. Cystic Fibrosis is considered a physical disorder. Children with CF are frequently in and out of the hospital with stays related to their child’s pulmonary function. They also have to follow a strict daily treatment regimen. The average life span for a child with CF has dramatically increased and is currently 37.5 years of age with many living much longer. However at the time of this article, they reported 20 years of age as the average for a lifespan. Although autism is a permanent disorder, it is not result in death. Another difference noted is that many children with autism may have some varying degree of cognitive impairment. This may result in remaining dependent for their entire lifespan with a small percentage achieving regular employment. In contrast, the CF child is capable of living a relatively normal life in terms of education, social relationships and job possibilities. All of this with the looming threat of premature death however, which increases the strain on family stress.

With the diagnosis of autism, comes a social stigma and the stress resulting from the extreme disruptions to daily life that the child’s behaviors may cause.   Autism is considered a psychological disorder that causes a varying degree of difficulties with behaviors, language and social skills, inappropriate emotional/social reactions, sensory issues and may result in some social isolation. Due to the differences between the researched illnesses of Autism and CF, different patterns of stress were associated with each disorder and the severity of stress associated with each disorder directly correlates with the amount of care that the child requires. Surprisingly, the stress on mothers caring for children with Autism or CF is not influenced significantly by the number of siblings in the family which contradicts findings of past literature.

The researchers of this article state that readers should interpret findings from this study with caution as subjects were not matched on marital status or number of siblings or degree of severity of the illness. The researcher also state the findings should not be generalized to all families who are caring for a child with a chronic illness as all family dynamics vary. The quality and quantity of stress varied among the clinical groups. Findings support, as hypothesized, that psychological disorders contribute more to family stress than chronic physical illnesses. The overall conclusion supports past research that mental disorders cause more stress than physical illnesses AND that the amount of stress reported is directly linked to the child’s temperament, responsiveness, behavioral patterns and the demands placed on the caregiver. It is discussed that this study highlights the need to family programming to be developed based on the needs of the child’s specific disorder as each family is faced with different stress levels and challenges. It is suggested that programming for families dealing with a diagnosis of a psychological/mental disorder (i.e. autism) should focus on dealing with despair, shame and isolation experienced as well as seek to educate the general public about the challenges of the disorder. For a family coping with a physical diagnosis, programming is needed to address poor prognosis of the illness including premature death.

This was an interesting read for me. Most of the findings contained in this article are in line with my thoughts on this matter. What about you? Did you learn anything new? Do you have any information on programming available for families facing these highlighted chronic disorders?

  • Holly Hamill

Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

By: Karst, Jeffery S. & Van Hecke, Amy V. (2012)

Discussed by: Krista Rice

This article discusses the lack of measuring parent-family outcomes related to Autism treatment options. Most treatment options have a plethora of data analyzing the results of child (patient) outcomes, but don’t specifically measure or analyze parent-family outcomes and how parent-family factors may impact the success of the treatment option itself.  The authors have developed a model of treatment evaluation, suggesting that not only child outcomes be measured but also parent-family outcomes be measured to determine how successful an ASD treatment option is for a particular family.

The author’s proposed model of treatment evaluation includes 2 domains, Child Outcomes and Parent & Family Outcomes. The authors recommend both domains “be consistently evaluated both as outcome measures of interventions and in context of their relationship with one another” throughout the treatment process.  Within the Parent & Family Outcomes domain, the authors suggest the following be included:

  1. Assessment of family functioning and well-being
  2. The parent-child relationship
  3. Parenting efficacy and sense of competency
  4. Parenting stress
  5. Parental mental health (specifically- anxiety and depression)
  6. Any other factors deemed appropriate for a particular intervention

The authors describe that by going through each subcategory of the Parent & Family Outcomes domain, therapeutic barriers can be identified and addressed, instead of assuming a certain factor negatively impacted the success of a proposed treatment. The authors detail how going through each variable before beginning treatment, can help providers and families determine which treatment options would be best and/or what factors can/will impact the treatment option itself. The authors  provide examples of going through each domain. For example, assessing family functioning can help providers understand strengths and weakness within the child’s family and environment. Or if a parent has low parenting efficacy (their belief in their own ability to effectively parent), then providers can offer parenting classes, support groups to reinforcement positive parent techniques. Interestingly, the authors note that even though going through these factors may delay the onset of treatment for a child, delayed onset seems more preferable than allowing negative influences to reduce the treatment outcomes of the child. Furthermore, by identifying parent-family strengths, the findings may enhance the effectiveness of the treatment option. Next, the authors emphasize the importance of regularly assessing the parent-family variables throughout the treatment duration, otherwise one might be unaware of significant changes or events that could alter treatment outcomes. The authors then discuss how the variables should be measured near the conclusion of the treatment and should be an indicator of the overall benefits of therapy in conjunction with the child outcome results.

Reflection: The authors do a great job in defending their research and proposed model of treatment evaluation. It is important to consider how the parent-family will impact the results of a recommended treatment option. It’s not only imperative to provide the child with ASD an effective treatment option(s), but also consider the best option(s) for the parent-family and consistently monitoring the domains to ensure success.