Living with a Sibling Diagnosed with Fetal Alcohol Spectrum Disorder
By: Josée Bélanger
As you may know, individuals affected by Fetal Alcohol Spectrum Disorder (FASD) are not the only ones who are impacted by their condition. Often, family members such as parents, grandparents, and siblings are very involved with caring for the individual with FASD. Though research has highlighted the parental experience, the purpose of this research was to examine the experiences of the siblings in families that have children with FASD. Aside from understanding the impact of everyday life for siblings of children with FASD (Part 1) and their strategies towards adaptation (Part 2), the goal of this mixed-methods study, which included interviews with siblings of children with FASD and questionnaires, was also to provide insight into how supports should be tailored to help this population.
Part 1: “He’s fun to have around when he’s in a good mood”:
The Experience of Having an Adopted Sibling Diagnosed with FASD
The first part of the study consisted of examining both positive and negative experiences in the lives of siblings of individuals with FASD. There were 5 main themes that described the siblings’ experience:
- Frustration. For many siblings, their greatest frustration revolved around their sibling’s mood and behaviours. Siblings expressed that it is very difficult to interact with their brother or sister with FASD because they are easily angered and lack in emotional regulation. The interviews also revealed that many participants are frustrated with the reactions towards their sibling with FASD made by members of society. Participants explained that individuals do stop, stare, and judge, when their sibling is having a tantrum or they are shunned and bullied at school for being different.
- Worry/Fear. Siblings voiced much concern about their sibling’s learning abilities, and feared the numerous illegal and dangerous behaviours that their brother or sister with FASD engaged in (e.g., early sexual experiences, mental health issues, running away). Another area to elicit fear/worry was future caregiving, as half of the participants showed much distress and concern about adopting this role in the future. Furthermore, many participants expressed concern for their parents as they have been impacted emotionally, physically, and psychologically by raising a child with FASD.
- Resentment. Throughout the interviews siblings maintained various situations as being unjust, such as the greater amount attention and resources (e.g. money, time, energy) directed to their siblings with FASD by parents and participants themselves. Though participants clearly understood that sacrifices were needed in order to raise their sibling with FASD, it was still difficult to accept the imbalance that occurred within their relationships (i.e., parents, sibling with FASD).
- Happiness: Happiness was often reported in the participants’ favourite memories or the best part of being a sibling to an individual with FASD. Happiness was elicited during times when they would play and simply be themselves without the tantrums or the FASD being visible through their behaviours. Happiness also arose when they were able to bond or help their sibling with FASD, as well as in moments of success where their sibling with FASD overcame the many challenges they faced.
- Personal Growth. Regardless of the negative emotions felt by the participants, interviews revealed that siblings were able to maintain positivity towards their experience as they also expressed the advantages of growing up with a brother or sister with FASD. Siblings discussed how having a sibling with FASD built character and made them better people as they developed more patience, acceptance, empathy, and other interpersonal skills. Some siblings also explained how they became very aware of FASD and its effect on others, so much so that they want to help advocate for FASD and were educating the public on a cause they hold dear to their hearts, FASD.
Part 2: The Need for Support: Coping Behaviours and Resources Employed by Siblings of Individuals with FASD
The second part of this study consisted of examining the strategies that siblings are employing to help them move towards adaptation. Specifically, two main themes highlighted the participants’ coping behaviours and their resources:
- Coping Behaviours. Throughout the interviews participants maintained needing space from their sibling with FASD. Participants achieved this through active avoidance whereby they engaged in pleasurable activities (e.g., biking, friend’s house, dance), away from their sibling allowing them to avoid the chaotic environment or to calm themselves down following an altercation. Participants also employed emotional avoidance by choosing not to emotionally engage with their sibling (e.g. minimizing their involvement), by reframing their thoughts to redirect the negative emotions away from their sibling, and by supressing their negative thoughts and emotions. Participants explained that emotional avoidance was used to protect them from being hurt emotionally and psychologically by their sibling.
- Resources. During the interviews participants expressed a strong need to be understood. When it came to talking about their sibling with FASD, half of the participants expressed being able to speak to their parents, three participants stated that they only speak with close friends, and two others confided in formal supports. Based on the data, someone who is willing to listen, has knowledge of FASD, can validate their feelings, and believes what they say, are all components that make these interactions successful, thus making the sibling feel understood. However, many challenges occurred such as not wanting to speak with their parents in fear of adding to their daily stress or when their friends, family, and therapists had little knowledge of FASD. In fact, isolation was described by many siblings who expressed not having many individuals to speak with, if any at all.
Based on the results briefly described here, siblings could benefit from both validation and education:
Validation. It would benefit participants to speak with someone who can validate their thoughts and experiences, such as a helping/health practitioner who is familiar with FASD or another sibling of someone with FASD (e.g., FASD sibling support group). Both resources would allow siblings to not only be accepted but to speak about their experiences in a safe place. Whereas a helping practitioner may be more helpful in attending to their feelings and help siblings with acceptance, speaking with other siblings who also have a brother or sister with FASD may yield or provide siblings with a true understanding of their experiences. Additionally, accessing support groups could increase the sibling’s social network, such as the building of friendships, which could promote longevity in their support system as well.
Education. In order to help siblings adapt, learning about sensory dysfunction, impulse control and calming techniques as proposed by the Edmonton and Area Fetal Alcohol Network (2007), could provide siblings with the tools to help reduce the occurrence of tantrums or to actively alleviate their sibling’s anger. Secondly, siblings reported feeling very overwhelmed and scared when considering becoming their sibling’s caregiver. To alleviate some of their fear, becoming educated on some of the issues they may face (e.g., housing), along with preparing and planning with their parents, could make for a smoother and more confident transition. Lastly, siblings are in need of strategies to help them adapt, such as coping behaviours resources, all of which could increase their well-being and overall quality of life.
If you would like more information about this study, or have questions for the researchers, please contact Josée at JBelanger3@laurentian.ca or Dr. Shelley Watson at email@example.com.
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