This month’s ASAT feature comes to us from Mary Jane Weiss, PhD, BCBA-D and Nicole Pearson, PsyD, BCBA-D, Association for Science in Autism Treatment. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

I am a mother of three children, one of whom has autism and requires a tremendous amount of time and care. I worry about how this is impacting my other children, both of whom are a few years older and are very aware of how our family has changed because of their sibling’s diagnosis. Do you have any advice on how to best address this with them?

Answered by: Mary Jane Weiss, PhD, BCBA-D and Nicole Pearson, PsyD, BCBA-D, Association for Science in Autism Treatment

Having a child with autism spectrum disorder inevitably impacts the entire family, from the stress and anxiety that accompanies the initial diagnosis to the time-intensive nature of navigating treatment options and providers. It can also present challenges for siblings.

While children of younger ages may not be fully aware of their sibling’s disability, they likely detect parental stress, perceive inequities in the amount of time and attention given, and struggle with a sense of disruption in overall family life (Feiges & Weiss, 2004; Smith & Elder, 2010). Adjustment difficulties are influenced by such factors as sibling age and gender as well as family size. Siblings closer in age to the child with autism, and those who are younger and have not yet developed effective coping strategies can be more affected. However, as a parent, there are many strategies you can take to support sibling coping and adjustment.

Foster a supportive environment at home

Siblings may feel many emotions, including love, joy, fear, anger, embarrassment, resentment, and guilt, among others. Encouraging an environment of open communication allows the sibling to safely express all emotions. Doing so helps with positive coping and establishes a foundation for good familial communication and problem-solving.

Further, as siblings become aware of such differences, they will likely look to their parents and family members for guidance. Thus, parent coping and adjustment play an important role in sibling adjustment. As such, it is important for parents to be cognizant of the impact their actions, behaviors, and decisions will have on all their children.

Ensure your child understands what autism is

Parents sometimes overestimate their typical child’s understanding of autism as the child may be able to explain what it is without fully comprehending it. Making sure that siblings have developmentally appropriate information will help reduce their fears and misconceptions (Glasberg, 2000; Harris & Glasberg, 2003).

When speaking with children under age nine, parents should keep explanations brief and frame the sibling with autism’s deficits in the context of having not yet learned or mastered particular skills, such as playing with others or communicating in ways that other children do. For example, saying, “Your sister learns a bit differently than you and me, so she needs extra help,” or “Your brother may not be able to talk but we are teaching him other ways to show us what he wants to say.”

As children age, explanations can be more involved. Behavioral escalations can be disruptive for typical siblings, so providing them with clear explanations can help alleviate some of these feelings. Regardless of the children’s age, parents should offer reassurance and convey love and acceptance of everyone in the family. There are several free online resource guides available:

• Autism Speaks offers a “Siblings Guide to Autism” toolkit designed for siblings ages 6-12 that parents and siblings can read together to learn more about autism and facilitate conversation about it
• Organization for Autism Research’s “Kit for Kids” offers an illustrated booklet for elementary and middle school students, called “What’s up with Nick?” and “Autism, my sibling, and me”

Promote meaningful relationships between siblings

Creating opportunities for younger children to play together or helping older siblings to find common interests, even if it’s as simple as doing a puzzle together or playing a video game, can go a long way in increasing the quality and quantity of interactions and ultimately building sibling bonds.

Being mentors to one another can be very fulfilling for siblings and can promote bidirectional feelings of self-efficacy and nurturing. Prior to starting, make sure that the preferences of both children are understood, and start with easy tasks to ensure success. Perhaps the autistic sibling is great at puzzles, while the typically developing sibling is great at following recipes to bake.

Whenever possible, involving the individual with autism in the discussion of autism is preferred.  If it is possible to share information about autism openly and in their presence, it may be helpful to do so. For children who do not yet understand much about their autism, it is important to be as respectful as possible when explaining it to others, discussing it, or otherwise referring to it.

Build one-on-one time for each sibling and foster individuality 

While inequities exist in all families, they are intensified in a family who has a child with autism. And if typical siblings feel dissatisfied with these inequities, their relationship with their sibling with autism is negatively impacted (Rivers & Stoneman, 2008). To help minimize the impact of these inequities, it’s important to make time for one-on-one interaction with each sibling. Carving out even a small amount of time where you’re giving your child your undivided attention can go a long way. Let them know that even though they may not always get as much attention as their sibling, they’re loved and cared for equally.

Encourage siblings to get involved in sports, clubs, or other community activities where they can develop relationships with peers and just have fun. Doing so allows them the time and space to be their own person and establish a sense of individuality (OAR, 2014).

Consider additional sources of support

Finally, sibling groups can be a helpful source of support. They provide siblings the chance to meet and speak with others with similar experiences and can give them accurate and age-appropriate information about autism. If a support group isn’t readily available within your children’s school or your community, consider looking at some of the following resources for more information:

• Sibling Support Project: Offers more than 475 community support programs, called SibShops, for younger siblings of children with special needs.
• Online resources: There are several online communities for siblings, both teens and adults:
  • SibTeen, an online Facebook group for teen siblings: https://siblingsupport.org/connect/sibteen/
  • SibNet online forum for adults: https://siblingsupport.org/connect/sibnet/

The Organization for Autism Research (OAR) has also developed the “Autism Sibling Support Initiative” offering helpful resource guides for young children, teens, and parents.

While much is often said about the challenges faced by siblings of people with autism, there are also substantial positive outcomes. Most siblings who reflect on the experience in adulthood attribute their high levels of compassion, tolerance, patience, and concern for others to having had a sibling with special needs. Furthermore, many of them develop a sense of mission and enter helping professions.

There is no universal description of the ways in which this role changes the lives of siblings of children with autism. Parents can help their typically developing children by creating an environment of transparency and openness about autism. They can help siblings find effective and rewarding ways to interact with their brother or sister with autism. Parents can also ensure that every child in the family gets needed attention and permission to pursue their own dreams. Finally, they can remember that most siblings of children with autism end up being compassionate human beings who treasure and admire their siblings, and who note both the struggles and joys that the family experienced because of being touched by autism.

Note: This submission was adapted from Drs. Weiss and Pearson’s book chapter, “Working effectively with families of children with autism spectrum disorders: Understanding family experience and teaching skills that make a difference” which appeared in “School success for kids with autism.”

References:

Feiges, L. S., & Weiss, M. J. (2004). Sibling stories: Growing up with a brother or sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company

Glasberg, B. A. (2000). The development of siblings’ understanding of autism and related disorders. Journal of Autism and Developmental Disorders, 30, 143-156.

Harris, S. L., & Glasberg, B. A. (2003). Siblings of children with autism. Bethesda, MD: Woodbine House.

Organization for Autism Research (OAR). (2014). Brothers, sisters and autism: A parent’s guide to supporting siblings. Retrieved from: http://www.researchautism.org/family/familysupport/documents/OAR_SiblingResource_Parents_2015.pdf

Rivers, J. W., & Stoneman, Z. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1740-1750.

Smith, L. O., & Elder, J. H. (2010). Siblings and family environments of persons with autism spectrum disorder: A review of the literature. Journal of Child and Adolescent Psychiatry Nursing, 23, 189-195.

Weiss, M. J., & Pearson, N. K. (2012). Working effectively with families of children with autism spectrum disorders: Understanding family experience and teaching skills that make a difference. A. L. Egel, K. C. Holman, & C. H. Barthold (Eds.). School success for kids with autism. Waco, TX: Prufrock Press.

Citation for this article

Weiss, M. J., & Pearson, N. (2016). Clinical Corner: How to manage the impact of child with autism on siblings. Science in Autism Treatment, 13(2), 22-26.

About the Authors

Dr. Mary Jane Weiss, Ph.D., BCBA-D, LABA, is the Dean of the Institute for Applied Behavioral Science, the Director of the Ph.D. Program in ABA, and a Professor at Endicott College, where she has been for 11 years. Dr. Weiss also does research with the team at Melmark. She has worked in the field of ABA and autism for over 38 years. She received her Ph.D. in Clinical Psychology from Rutgers University in 1990 and she
became a Board Certified Behavior Analyst in 2000. She previously worked for 16 years at the Douglass Developmental Disabilities Center at Rutgers University. Her clinical and research interests center on defining best practice ABA techniques, exploring ways to enhance the ethical conduct of practitioners, and training staff to be collaborative, compassionate, and culturally responsive.  She is on the board of ASAT.

Dr. Nicole Pearson, PsyD, BCBA-D, is a Licensed Psychologist and Board Certified Behavior Analyst (BCBA-D) who has been working in the field of autism and developmental disabilities for more than13 years. Passionate about serving children with complex medical, behavioral and mental health needs, Dr. Pearson has worked across a number of settings including hospitals, clinics, homes and schools. Most recently, she served in a dual role as Program Director and Director of Psychological Services at The Joshua School. Dr. Pearson provides consultation and training to schools and families through her private practice, West Side Behavioral Associates. She has also volunteered with autism programs internationally in Kenya and the Maldives. Dr. Pearson holds Master’s and Doctoral degrees in Psychology from Fairleigh Dickinson University and a Bachelor’s degree in Business from Villanova University. She currently serves on the Board of Directors for We are the Village Ltd. and A Global Voice for Autism.

By: Tameika Meadows, BCBA from I Love ABA

“Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:

1. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).”

www.CDC.gov

It is part of the diagnostic criteria for Autism to struggle with Rigidity.

What is Rigidity? It is an inflexibility, an inability to tolerate change or unexpected events, to varying levels of difficulty.

This is something many of my clients struggle with, and it can be quite life impacting in negative ways. Issues around rigidity can affect the school day, relationships/social ties, life at home, transitions, community integration, and vocation/employment success (for older clients).

Some examples can include:

• Difficulty tolerating a change in teacher
• Difficulty staying calm if something breaks, loses power, or the battery dies
• Difficulty staying calm if mom or dad drive past Wal-Mart but we don’t go inside 
• Insistence on the same routine every day, Monday-Sunday
• Refusal to change eating habits, clothing choices, etc., from one day to the next
• Difficulty sleeping if traveling, away from home, or the bedtime routine is different

As rigidity is a core characteristic of Autism, treating or intervening on it must be approached carefully. The goal should not be to turn an inflexible person into a flexible person. The goal should be to help the learner adapt to an ever-changing world that will NOT stay constant, and increase the learners coping skills to accept what they cannot control. 

To a degree, most of us are creatures of habit. We buy a certain brand of makeup, we brush our teeth a certain way, we park in the same place when we go to work, we always sit in the 2nd row for our college lectures, etc. It isn’t inherently a problem to like sameness and predictability in your life.

But.

This does become a problem when the reaction to the routine being disrupted, is explosion, aggression, self-harming, etc. For example, I have specific restaurants where I order the same thing every time I go. If I went one day and that item wasn’t available, I’d be disappointed, annoyed… I might even leave and go eat somewhere else. But I would not become a danger to myself or others, and I would not perseverate on that annoyance for hours or days.

So how do we help our clients, students, and loved ones calmly accept life’s inevitable changes?

ABA provides many, many strategies to teach flexibility and tolerance to change. Let’s discuss a few:

1. What are we teaching instead? This should be priority #1, it is truly that important. We cannot just rip away established patterns and rituals, we have to first identify the replacement behavior(s). This could include teaching the ability to request (“I wanted the red cup”), to wait (“We will go to Wal-Mart, but I’m stopping at Wendy’s FIRST”), to self-manage anger and disappointment (“I can see you are angry. Let’s do our deep breaths, okay?”), and/or to problem solve (“Oh no, your tablet’s battery died. How do we fix that?”).
2. Do we have rule out for underlying issues? It is not uncommon that Autism co-occurs with other diagnoses. Is the learner just “rigid”, or are they OCD? Or struggling with an undiagnosed Anxiety disorder? 
3. Intentionally, and systematically, introduce change. I work with so many families who try to skirt this issue by avoiding changing things in their child’s environment, giving in to the rituals, even driving out of the way in the community to avoid passing places that will trigger the child. I know this seems like the easy way to manage this problem, but in reality it will make things worse. It is almost presenting a lie to the learner to act as if nothing in their environment need ever change. That just isn’t real life. We need to help the learner by introducing small, intentional changes (start super small) and then helping them tolerate that change. Speaking of tolerate….
4. Help the learner develop a “plan of action” when they are triggered. This will be highly specific to the individual learner, so I cannot give a recipe for this. What is most important is to utilize function based intervention to teach a strategy to the child for de-escalation. For example: When there will be a substitute teacher at school, inform the learner. (If possible) Talk about how they feel about this change. Empathize with their distress, and do not minimize it. Engage in action steps such as pacing, squeezing a stress ball, humming, and deep breathing with closed eyes. Remind the learner of the things they can control/the things that are unchanged. For example: “I know you’re angry that Mr. Walker is not here today. That’s disappointing. We can go in the hallway and take a break, and when we come back in you let me know if we’re doing our writing journal or sight word folder first. Okay?”.
5. In Step # 4 I referenced “Empathy”. I know it can be frustrating and stressful when your client/child/student explodes over a moved seat, a different bowl at breakfast, or a broken toy. You might think “WHAT IS THE BIG DEAL?!”. Well, do you like change? If we’re honest, most of us do not like unexpected, unrequested change. It makes us angry, and we feel annoyed. So even if you can’t fully relate to the size of the explosion, you can relate to the feeling, right? That “relating” is empathy. Put yourself in the learners shoes, and treat them the way you would want to be treated if you were that upset and agitated.

Additional Resources

• Rigid Eating Habits
• Food Selectivity
• Inflexible Thinking
• Use Inflexibility to Teach Flexibility
• SuperFlex Curriculum
• Intentionally Changing Routines
• Poljac E, Hoofs V, Princen MM, Poljac E. Understanding Behavioural Rigidity in Autism Spectrum Conditions: The Role of Intentional Control. J Autism Dev Disord. 2017 Mar;47(3):714-727. 

This piece originally appeared at www.iloveaba.com.

About the Author

Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”