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.

 

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

  1. Laura Woodring says:

    When treating students with autism, I am grateful for my clinical and home health experiences with this population. Working with OTs, ABA therapists and family therapists has provided opportunities to fill my tool box with strategies that can accommodate ASD students, and help them to integrate into their classroom communities for better communication and social acceptance. When a student with ASD is comfortable in their space, then their teachers and classmates are less impacted by their stress, which creates a calmer learning environment.

    • Aubrey Apel says:

      Yes! I love that last sentence. This is so true; I have a student who if finally comfortable at his new school and has multiple people he can trust. He is having so many more “good” days and his classmates are so patient. The little kindergartners are so understanding and protect him at all costs. We have so much to learn from them!

  2. Holly Hamill says:

    In reading this information, the findings are not surprising. The day to day behaviors of children with ASD impede learning, progress, communication and overall enjoyment of relationships at home and in the classroom. All parents want the best and happiest life possible for their children. We need to recognize the struggle of families faced with a child requiring additional care due to an autism diagnosis. It is surprising that there isn’t more research focusing on the stress experienced by a special education teacher while dealing with behaviors presented by the child with ASD. While our job can be super challenging and stressful, it can also be exceptionally rewarding. The take away here is that managing behavior problems causes the most stress for parents in this category. This goes right along with what I observe when speaking with parents about what they want their child to work on at school.

  3. This article makes a lot of sense to me. As a speech pathologist in the school system, we encounter a variety of teachers and parents, who have varying levels of knowledge and experience with ASD which can impact how they manage stress associated with this diagnosis. As a result, we should be sensitive to these differences and give support where needed. This support will look different and will vary depending on the knowledge/understanding of the teacher or parent. Ultimately, our related service model encourages us to support students in the classroom and that means helping teachers understand ASD and behaviors associated.

  4. Lauren Taylor says:

    Of course there is a direct correlation with behavior problems and stress levels for both families and teachers. I feel like this goes for students with and without ASD. Maybe there hasn’t been a study like this because the results are obvious? 🙂

    This article reminded me of my students on the spectrum that come in to 6th grade and significantly struggle with the transition to a new school, schedule, teacher, related service providers, etc. and act out because of it-which causes stress to everyone involved-but especially to the student. Once routines are established and the environment becomes one where the child feels safe and understood and able to communicate effectively, the behaviors usually decrease, along with the stress. Sometimes that takes six months, sometimes 2 years, and sometimes they just get comfortable right when it’s time for them to transition to high school. While we do our best to communicate with previous schools and find out what worked and what didn’t, what the child enjoys and things they dislike, what triggers them, etc., it’s not always effective to combat the amount of change they are experiencing. I wish there was a better way for us to provide more consistency for these students as they transition from elementary to middle and middle to high schools.

  5. Krista Rice says:

    Like the previous commenters have stated, I also am not surprised in the correlation of behavior and stress. At one of my schools, I would like to see more collaboration with gen ed and special ed, specifically in relation to the student with ASD. I keep thinking about one student in particular…each year, student deals with the transition of a new school year- classroom, peers and schedule. It is a stressful time for everyone involved! Over the course of 2 years, the student’s data, specifically related to his behavior (avoidance, elopement, aggression), illustrated that he was not being successful in his current setting and the team began to consider other placement options. Then we started this school year. Consistent routines, expectations, and a cohesive schedule benefited this student greatly! It also helped this student’s teacher was his teacher when he was younger, so I feel like they already had a good relationship and the stress wasn’t as prominent as it had been with other teachers. This student is doing his best yet! I still worry about his transition to middle school, but it shows that if you can stick it out, the student CAN be successful. Of course, teacher stress, student stress and I am sure parent stress has decreased this school year 🙂

  6. allison forrester says:

    The results of the study supported the hypothesis, which was not surprising. It supports targeting the behavior to decrease stress on parents and teachers across settings. It is important to utilize resources to help accommodate the children with ASD to decrease behaviors and eventually, decrease stress.

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