Families with neurodiverse children account for a significant proportion of households worldwide, and their presence has profound implications for the entire family’s well-being. Having a neurodivergent child in the family can significantly impact family dynamics and pose unique challenges, particularly in providing adequate support for the special needs child. However, despite its importance, there remains a significant knowledge gap concerning how a child’s disability affects parents, siblings, and other family members, as well as how available resources influence these complex relationships. While several programs and organizations offer resources to assist these children and their families, the system is unfortunately fragmented and arduous to navigate (Noonan, 2020).
In this article, we delve into the current understanding of the effects of child neurodiversity on the family, shedding light on the intricate needs of families with neurodiverse children and exploring the resources available to support them. Furthermore, we examine the impact of neurodiversity on sibling relationships. Through this exploration, we hope to accentuate the significance of neurodiverse families in society and advocate for a more integrated and supportive approach to address their needs effectively.
Implications for the Family
A neurodivergent child in the family can profoundly affect not only parents but also siblings and extended family members, creating a unique shared experience that influences all aspects of family functioning. Within this context, families encounter both positive and negative consequences that shape their lives. On the positive side, this journey can expand horizons, foster a profound awareness of inner strength, resilience and patience among family members, strengthen family cohesion, and foster connections to supportive community groups. However, the challenges posed by raising a special needs child call for an excruciating amount of effort and time for the entire family. This includes the demands of finances and time, physical and emotional strains, and the complexities of logistics that can have far-fetched effects. Factors like the specific type and severity of the condition, the family’s physical, emotional, and financial capacity, and the availability of adequate resources to assist them in their journey are all results of the influence a neurodivergent child in the family may have (Noonan, 2020).
Since having a special needs child in the family is something nobody can be prepared enough for, parents go through an extremely difficult phase, the first step of which is accepting the situation and child the way they are and unconditionally loving them for that. However, acceptance too comes with alleviated stress levels which may take a toll on their mental and physical health. Additionally, parents also face the challenge of finding appropriate and affordable child care. Moreover, in the context of developing countries like India, according to the WHO, we still lack the resources, awareness, and services, including diagnostic assessments, therapy, and specialized education programs required for such individuals (Panda, 2023).
Such a situation relies mainly on healthcare provided in the country and rising above the societal stigma it poses. Moreover, parents may grapple with feelings of guilt, self-blame, or reduced self-esteem. The care and attention required for the disabled child may divert focus from other aspects of family functioning, impacting the overall family dynamic. The presence of such a child may also influence how parents allocate their time and financial resources to their children. This affects parenting practices and shapes expectations for achievement, responsibility, and contributions to the household among healthy siblings. Consequently, the health and development of the siblings may also be impacted. These multifaceted effects on families carry crucial implications for the health and well-being of neurodiverse children, calling for a much-needed comprehensive, and empathetic approach to support both the child and the family (Noonan, 2020).
Impact on Siblings
Based on certain personal experiences, the siblings of special needs individuals have to go through a massive lot at a very young age. Acceptance is the hardest for them as they may not be mature enough to realise the severity of the situation. In a lot of cases, siblings are unable to accept the condition of their special needs sibling and tend to take it in a negative light leading to a rise in resentment towards the sibling as well as the parents (Strohm, 2008). How are siblings supposed to successfully adapt to living with a neurodivergent sibling? How are they expected to cope with the unequal distribution of time and resources towards them? How do they take their uniquely stressful experiences positively and grow holistically? (Schuntermann, 2007). These questions force us to dive deep into studying the lives of such children and uncovering the risk and protective factors involved in being the sibling of a neurodivergent child.
Sibling relationships have been extensively studied in light of this matter and have become a core aspect of developmental psychology. The family system perspective implies the presence of a sibling with mental retardation will impact the psychological development and functioning of their typically developing siblings (Rossiter & Sharpe, 2001). However, quite a lot of variability is observed in their behaviours. While some tend to benefit from the experience, grow holistically and gain maturity at a very young age, others tend to be worse off (Schuntermann, 2007). They tend to grow up under massive stress levels and experience varied feelings towards their siblings. They find themselves in a state of confusion where on one hand they can be protective and loving of their sibling but also find themselves experiencing feelings of resentment, embarrassment, guilt, sorrow, and fear. These negative emotions if not handled in a mature and delicate way by the parents, can turn into anger and a sense of worthlessness. A lack of proper support and guidance could cause these siblings to be at risk of developing longer-term physical, emotional, and psychological problems. Circumstantial evidence suggests that this may increase the chance of them turning to risk-taking behaviour, including misuse of drugs and alcohol (Strohm, 2008).
Understanding the Risk and Protective factors
A sibling of a special needs child tends to experience a complex range of emotions intertwined with certain risk and protective factors that may reduce their ability or help them cope better. For instance, they may not be able to comprehend what their sibling is going through leading to certain misconceptions. They may not have anyone to talk to about their experiences that are different from their sibling and why. Moreover, the feeling of being overlooked, and not given attention to while also not burdening their parents with extra stress is a dilemma one cannot fathom a young child to go through. Additionally, isolation from peers, and other intricate thoughts they may not be able to express may lead to anxiety and depression in the future (Strohm, 2008).
On the other hand, a lot of these issues can be avoided through certain protective factors. Starting with healthy communication, where the sibling’s experiences are viewed as parallel to the parent’s experience and not neglected. Siblings too desperately want to be a part of information pertaining to their sibling’s health but are often overlooked and given half information from doctors and even parents. Transparent communication fosters the feeling of trust within the family and strengthens family ties. Setting equal expectations and not overburdening the sibling with responsibility is the second most important protective factor. Siblings of special needs children often tend to grow up too quickly and experience a phenomenon called parentification where they sense responsibility for their special needs sibling. This is positive to a certain extent as it helps take the burden off parents but too much parentification can set unrealistic expectations for the sibling leading to feelings of rejection (Landman, 2020). Last but very importantly, associating with support groups, encouraging interaction of the special needs child with the family and outside world and taking care of one sown physical, emotional and mental health as caregivers.
While there is a lot that remains to study about the lives of families with special needs children, there has been quite a breakthrough in spreading awareness worldwide and making them feel heard, loved and accepted. Parents and caregivers of neurodivergent children play the most important role in determining the kind of life they want to lead; whether it be cultivating sibling relationships or coming to terms with the situation themselves. There are numerous facilities available to aid special needs children but very few focus on the people around them; their parents, siblings and family. The impact this has on them and the unexpected journey they go through must not be overlooked. It is imperative for them to be physically, emotionally and mentally healthy in order to provide for the special needs child.
Ms. Dhimahi Patel and Dr. Garima Rajan
Department of Psychological Sciences,
FLAME University, Pune
About the Authors:
Ms. Dhimahi Patel is a recent Psychology Graduate from FLAME University, Pune and Dr. Garima Rajan is an Assistant Professor of Psychology, FLAME University, Pune.