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.

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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.

 

Tech Tuesday

Darcy Lanham shares:

Ahhhhhh Preschoolers! How do you keep little, busy, three year olds (with language disabilities) in the same spot and engaged? Well, I definitely do not have the answer to that question, but their eyes get wide with amazement when I ask the question, “Who wants to play on the iPad?”

Here are some of the apps I have used with my preschoolers: Toca Boca, Articulation Station, Mr. Potato Head, Coloring Farm, and Animal Sounds. Articulation Station and Photo Artic are both a series of flashcards and games that you can use to keep data as you go. It is a great activity for articulation drill and practice, but also to address labeling and wh-questions. My speech kiddos are so happy just to get to swipe to the next screen. I use the Toca Boca, Pepi Bath, and Animal Sounds as a way to facilitate language, identify pictures, and make requests/comments. All of these apps have a lite (free) version so you can try it out before buying it.   A lot of the vocabulary presented in these apps seems to align well with the classroom vocabulary from the Big Day Curriculum.

This week I used Mr. Potato Head in therapy. Specifically, I was targeting deletion of final consonants (“nose”, “eyes”, “mouth”) and also answer function based questions (“What do you use to hear?”). Following using the toy Mr. Potato Head, we completed the same tasks using the Mr. Potato Head app. This transition seemed to help my students who can identify objects but are having difficulty transitioning to picture understanding.

To be honest, I was a little weary to accept the iPad. I’m not a very tech savvy SLP, so I worried about how I would incorporate it into my daily therapy sessions. I’ve been hitting up all my Speech Friends, asking them, “What is your favorite app for preschoolers?” I’m truly grateful that the WHAS Crusade supplied me with an iPad. It really has benefited the children on my caseload. It is always a challenge to change the way we do therapy, but the challenge is always worth the reward. It helped me to better engage my students and motivated them to communicate.

Tech Tuesday

Ashley Becker shares:

As an overload therapist, I am constantly carrying materials back and forth between schools. I felt like the i-Pad would allow me to decrease the amount of “things” I was lugging around on a day-to-day basis. Since having the i-Pad, I have honestly just “gotten my feet wet” in all of the speech programs that it has to offer. There have been a couple of apps that I have found to be useful and want to begin using more frequently with my speech students.

  • Articulation Test Center-Articulation & Phonology Test—I just downloaded the lite version, which allows you about five trials. The full version (which I would love to be able to buy) is $59.99. This app is perfect for completing speech screenings as well as a “quick check” on my current speech students’ progress with their sound production. The app allows you to select an age group, which presents pictures that the children are familiar with and targets age appropriate speech sounds. When presenting the pictures you are able to mark sounds produced in error as well as make notes while screening. At the end, you are able to print or email yourself a report that details the child’s error sounds. The printout has been great to provide to parents and teachers.

  • Quick Artic—This is a free app that is perfect for those days when you need to collect solid data (and do some drill practice). It allows you to practice articulation skills for the most common articulation sounds (/f, g, k, l, r, s, ch, th, z, l-blends s-blends and r-blends/) in all word positions on a word level. It contains real pictures and allows you to track correct and incorrect answers.

 

  • WH Questions (by Super Duper)—This app is the “WH” question fun decks for “who,” “what,” “when,” “where” and “why” questions. There are four games for each “WH” set of cards (secret decoder, multiple choice, matching and drag and match). It allows you to keep data, which is great for tracking student progress.

 

I look forward to exploring more apps on the i-Pad to use with my students and am very grateful to the WHAS Crusade for Children for the donation!

 

Tech Tuesday

Julia Tabler shares:

The ipads engaged the students to answer ‘wh’ questions about a topic they chose for their passion projects. The student had to think of a topic they felt strongly about such as: feeding the hungry, saving ocean animals or basketball. Then the students researched their topic via the internet using the ipad. Next, the student’s had to answer the following questions from what they learned from their research: what, where, why, who, and when. Last, the students put all the information they researched on a poster board and drew a picture about their topic. In addition, the passion project exercise facilitated the students to learn research strategies. The ipad was an instrumental tool in incorporating project based learning in the speech therapy setting.