We thank Trish Thorpe for writing to us about her handbook outlining the importance of parental support and guidance for special needs sibling and agreeing to a guest post introducing her book. We look forward to learning more about Ms. Thorpe as she has agreed to take part in our Author Interview Series. By collaborating on this handbook with a professional psychologist, the author was able to leverage the insight she learned from years of counseling about her lifelong relationship with her own autistic brother.
This is an important resource for anyone wanting to understand and support ASD siblings. My brother and I grew up with very unaware, self-involved parents. Short story…I spent years in therapy sorting through our family dynamics and learned so much about the kind of parental support needed to raise special needs kids and neurotypical siblings in a balanced home. I collaborated with my therapist and wrote a series of tips that will hopefully help parents and caregivers understand and support siblings with autism spectrum disorder ASD.
My goal is to raise awareness of the need for Autism Spectrum Disorder sibling support the often-overlooked piece of the ASD support puzzle. You probably find yourself constantly explaining why the rules and expectations are different for different members of your household.
This will hopefully dispel any claims of unfair treatment. If you explain it as being an advantage for the entire family, that may allay any claims of favoritism. Create an environment of compassion for differences in others. Children mimic their parents. They will follow your lead. Short story…I spent years in therapy sorting through our family dynamics and learned so much about the kind of parental support needed to raise special needs kids and neurotypical siblings in a balanced home.
I collaborated with my therapist and wrote a series of tips that will hopefully help parents and caregivers understand and support siblings with autism spectrum disorder ASD. My goal is to raise awareness of the need for Autism Spectrum Disorder sibling support the often-overlooked piece of the ASD support puzzle. You probably find yourself constantly explaining why the rules and expectations are different for different members of your household.
This will hopefully dispel any claims of unfair treatment. If you explain it as being an advantage for the entire family, that may allay any claims of favoritism. Create an environment of compassion for differences in others. Children mimic their parents. They will follow your lead. Learning compassion from your love and guidance will benefit them greatly. Find a spot in your home that they can call their own. It can even be as simple as a shelf or a drawer. Just something that is solely theirs. Make sure that both siblings understand the boundaries.
Just say it out loud, more than once, and it will sink in eventually. Our participant siblings frequently used redirecting techniques to redirect their siblings' attention. This redirecting usually occurred before potential meltdowns. Jared described his use of this technique:. Well, I actually go, like, probably in front of him, or something like that to like, try to get him to like, look at something else or something.
This appeared to be an effective use of the Premack principle which states that more probable or preferred behaviors will reinforce less probable or less preferred behaviors [ 34 , 35 ]. Mitch used this technique, also: Teaching their siblings new skills was also a technique that our participants used in a proactive manner. It appeared that the siblings chose this strategy to provide their siblings with ASDs with skills that might prevent future challenging behaviors. RaeEllen spoke of trying to improve her brother's social skills:.
I'm sort of working with him on how to be social. I'm a social butterfly. I'm a social person. We got some coffee there, at the Union, with an autistic boy. This study contributes to the qualitative research literature on the perspectives of typically developing siblings of children with ASDs on their experiences.
More specifically, our findings, interpreted through the framework of family systems theory, offer insight into the sibling subsystem, cohesion between typically developing siblings and siblings with ASDs, and adaptability of typically developing siblings. Healthy family functioning has been identified as balanced cohesion and adaptability [ 5 , 6 ], and our data analysis offered insight into the self-reported cohesion and adaptability of our participant siblings.
It is important to note that due to the limited number of participants and the nature of this study i. We have organized our discussion to address our research questions. Recent research and reviews of literature on siblings' perspectives and their relationships within families that include children with disabilities have indicated that various contextual factors such as knowledge about the children's disabilities or conditions e. The present study confirms the findings of Petalas et al. In addition, our participant siblings also described their sibling subsystems in relation to their cohesion and adaptability to their siblings with ASDs.
Some researchers have found that sibling cohesion is negatively affected by the presence of children with disabilities in families [ 9 , 20 , 42 ], and some have recently reported positive sibling cohesion e. Other researchers have published mixed reports on sibling cohesion e. Our current data support mixed findings. On a positive note, our interviewees told us that that they infrequently quarreled with their siblings, that they enjoyed mutual activities, and that they were friends with their siblings.
However, our findings also confirm some of the negative reports on sibling relationships that include children with disabilities. Negative comments of our sibling participants focused on their embarrassment or frustration with their siblings' aggressive or socially inappropriate behavior. Our younger participants Cloe, age 7, Morris, age 7, Hannah, age 8, and James, age 8 who were below the age of 10 described both negative and positive feelings but it was our older participants who provided more complex descriptions of their feelings and indicated that they were increasingly concerned with social acceptance for their siblings with ASDs and their own sense of responsibility regarding safety and care.
Our findings confirmed those of Benderix and Sivberg [ 46 ], Mascha and Boucher [ 16 ], and Ross and Cuskelly [ 47 ] whose participants described the negative effects of being exposed to their siblings' sometimes frightening aggressive behavior. We also found siblings expressing feelings of embarrassment, frustration and anger as did the siblings in Petalas et al.
Our findings confirm those of Stalker and Connors [ 48 ] who found higher levels of empathy and patience in siblings of individuals with disabilities. Our sibling interviewees also expressed a positive outlook on their family conditions and the futures of their brothers and sisters with ASDs. These comments appeared in participant responses regardless of their age, and many of our participants offered positive comments about their siblings after they had described negative incidents or attributes.
Benderix and Sivberg [ 46 ] conducted interviews with 14 siblings aged of children with moderate to severe intellectual disabilities or autism about their family experiences. Their study yielded seven thematic categories related to the siblings' feelings about their family experiences.
Theoretical Perspectives on Sibling Relationship Behaviors
Different contextual factors influenced the siblings in our current study yet our findings related to our participant siblings' feelings e. However, our participant siblings' brothers and sisters all had ASDs; our sample did not include siblings of children with intellectual disabilities. Unlike Benderix and Sivberg's participants, our interviewees did not face the impending placement of their siblings into group homes; however, they did share similar feelings of unsafety and anxiety when their siblings manifested aggressive behavior.
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Our research also extends Benderix and Sivberg's research by yielding data on siblings' adaptability through the use of coping strategies and employing techniques with their brothers and sisters with ASDs. The answer to this research question is relatively simple; our participants wanted time for themselves when situations were stressful, and they benefitted from talking with others who understood their situation, educating others about ASDs, and implementing techniques to assist their siblings with ASDs.
This study extends the limited research e.
1. Introduction
Two types of coping strategies are described in the literature: Using problem-focused strategies, a person attempts to solve a problem or change the situation, whereas when using emotion-focused strategies a person attempts to manage or regulate emotional states produced by the stressor [ 50 ]. Our participants described both emotion-focused and problem-focused coping strategies.
The coping strategies that our younger participants, below the age of 10, identified were focused on removing themselves from their siblings to defuse potentially conflictual situations. As our participants aged, they described their coping strategies with more complexity. Their coping strategies often involved seeking social support which is one of the five coping strategies that McCubbin et al. As with Petalas et al. They appreciated the opportunity to share their feelings and thoughts with other siblings who experienced similar challenges and rewards in living with their brothers or sisters with ASDs.
Bagenholm and Gillberg [ 43 ] found that some siblings could talk comfortably only with someone outside the home about their brothers or sisters with disabilities. None of our interviewees explicitly told us that they purposely sought support outside their homes, but we noted that they all described peers as their sources of support. In studying the adjustment of siblings of children with ASDs, Meyer et al. Our participants' descriptions of their adjustment and coping strategies also reflected this relation, especially in light of maladaptive behaviors.
Some of our interviewees said that they sought quiet time and space when they needed respite from their siblings. Consideration of siblings' explanations of the coping strategies they employ may be helpful in planning support group programs for these children.
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Previous researchers have found, as we did, that typically developing siblings often help to manage the behavior of and teach their younger siblings with disabilities e. Our sibling participants told us that their parents had taught them some strategies to use to calm or redirect their siblings when needed and that they used positive reinforcement to encourage their siblings to exhibit prosocial behavior. They also directly taught their siblings new skills that helped them function more effectively in social situations.
Although we used stringent qualitative research methods for this study, we recognize that the validity of the findings may be affected by some limitations. The first limitation of this study is that we did not establish extended relationships with the participants. We interviewed each sibling only once.
Multiple interviews would have been ideal; however, we feel that our interview data and our analysis of them provide a strong foundation for examination of these participants' perspectives on their experiences as siblings of children with ASDs.
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We also recognize that the generalizability of the findings may be limited by the nature of our participants. Although these findings are based on the perspectives of only 12 siblings from a small geographic area within one state, these participants ranged in age from 7 to 15 and reflected a variety of family lifestyles. We also did not include triangulation methods in this study as Guba and Lincoln [ 57 ] recommended for reducing researcher bias.
We concur with Smith and Elder's [ 40 ] contention that more work needs to be done, especially in the area of intervention research to identify effective strategies that support typically developing children as they adapt to the challenges faced in living with siblings with ASDs. We recommend more exploration on strategies that facilitate cohesion among siblings, extending the work of researchers like Strain and Danko [ 58 ].
We also support Meyer et al. Our findings only scratch the surface of the wealth of information practitioners, and researchers may learn from siblings of children with ASDs. We echo Petalas et al. More research is also needed on the effects of various types and aspects of family systems [ 5 ] and the varied experiences of siblings within families of diverse cultures [ 38 ]. The perceptions our participant siblings shared with us confirm the findings related to the positive effects of growing up with siblings with disabilities, including high family cohesion and less sibling rivalry [ 20 , 59 , 60 ].
However, our children were only from Midwestern Caucasian families. More longitudinal research on the effects of family members with ASDs on typically developing siblings is also necessary.
The Importance of Parental Support and Guidance for Special Needs Siblings
Such longitudinal research would extend the research conducted by Orsmond et al. Supportive programming for siblings of children with ASDs is necessary and valuable to families of children with ASDs. National Center for Biotechnology Information , U. Journal List Autism Res Treat v. Published online Apr Author information Article notes Copyright and License information Disclaimer. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
This article has been cited by other articles in PMC. Abstract The purpose of this study was to explore the experiences of siblings of individuals with autism spectrum disorders ASDs and identify their self-reported support needs. Introduction Autism spectrum disorders ASDs are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior [ 1 ].
Research Design The research team consisted of three faculty members from the Department of Special Education in a Midwestern university. Participants We recruited participants in this study by distributing information about the study to local support groups i. Table 1 Participants' demographic information. Open in a separate window. Interviews A member of the research team conducted a semistructured, individual, face-to-face interview with each participant sibling at a place and a time convenient for the family.
Data Analysis We audiotaped all interviews, transcribed them for analysis, and entered information such as time, date, and location. Findings Our themes emerged from our data, and as we analyzed the relation among our major themes we found them to be reflective of family systems theory [ 5 ]. Characteristics of Participant Siblings Most of these participant siblings strove for academic success, wanting to do well in school.
Descriptions of the Sibling Subsystem Much like typical sibling relationships, our participant siblings described their sibling subsystems or relationships with their siblings with ASDs with varying degrees of contentment and discontent. Ruby, age 14, described an incident when this occurred: For example, RaeEllen, age 12, described a practical joke she played on her brother: Cohesion between Siblings Cohesion in family systems theory refers to the emotional bonding between family members [ 5 ] and our participant siblings described cohesion with their siblings with ASDs as complex and varied.
Asia, age 14, expressed her concern about possible bullying at school: Breanna had fears regarding her brother's safety due to his lack of communication skills: Adaptability of Participant Siblings In family systems theory adaptability refers to the ability to change in terms of power structure, roles, and relationships in response to situational and developmental stress [ 5 ]. Breanna, age 11, sought support from an online support group, and said: The most detailed response came from Asia, age 14, who said: Techniques Used by Participant Siblings Our participants spoke of adapting to the experience of living with siblings with ASDs by learning techniques that were effective when dealing with the challenges their siblings posed.
Jared described his use of this technique: RaeEllen spoke of trying to improve her brother's social skills: Discussion This study contributes to the qualitative research literature on the perspectives of typically developing siblings of children with ASDs on their experiences.
Limitations and Scope of the Study Although we used stringent qualitative research methods for this study, we recognize that the validity of the findings may be affected by some limitations. Recommendations for Research and Practice We concur with Smith and Elder's [ 40 ] contention that more work needs to be done, especially in the area of intervention research to identify effective strategies that support typically developing children as they adapt to the challenges faced in living with siblings with ASDs.
Diagnostic and Statistical Manual of Mental Disorders. American Psychiatric Association; Centers for Disease Control. Autistic spectrum disorders among children. Diagnostic and statistical manual. Coping strategies in mothers and fathers of preschool and school-age children with autism. Families of children who have autism spectrum disorder: Families, Professionals, and Exceptionality: Positive Outcomes through Partnerships and Trust.
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Journal of Marital and Family Therapy. A Special Part of Exceptional Families. Siblings of individuals with an autism spectrum disorder: Rivers JW, Stoneman Z. Sibling relationships when a child has autism: Journal of Autism and Developmental Disorders. Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders.