Judy Gordon highlights the challenges and rewards of having a sibling with SEN.
Sibling relationships are generally viewed by relatives and friends as characterised by long-term reciprocity and rivalry. But life alongside a sibling with special educational needs entails a somewhat broader range of experiences. Around 2.3 million children in the UK have a sibling with disabilities, yet there is a chronic shortage of research or discussion about these children. My own sister has special educational needs. I grew up with a very limited understanding of those needs, and from a more mature perspective, I was only able to expand my knowledge by initiating my own research into available information and resources.
I grew up with a sister who has autism. Autistic individuals are conventionally categorised by a ‘triad of impairments’, broadly centred on their difficulties with social communication skills, social interactions, and rigid, often repetitive behaviour patterns. The latter difficulty is particularly characteristic of my sister, who must have watched The Little Mermaid a thousand times, and who always wanted her hair styled in a precise and very particular way before school (a style only I could create to her satisfaction, and which frequently made us both late for school).
When I was young and ill-informed about autism, I assumed that my sister was simply misbehaving, either to get my mother’s attention or to get her own way. This was not a major issue in my early life, because as one of six children I never seemed to lack playmates or attention, and all I really understood was that my autistic sister did not want to play with the rest of us in ways we considered normal. I only began to see autism in a broader context after I entered secondary school, where I recognised that my sister’s social skills and behaviour were very different to those of neurotypical children. As I grew older, I saw how her behaviour triggered frequent exclusions and numerous changes of school, until home schooling became her only option. I worried about her lack of friendships or opportunities to socialise with other children her age.
I was often (and to some degree still am) directly involved in my sister’s care. This could be challenging at times – especially when set against my adolescent desires to go out with friends regularly, get to school/college on time, etc. – but my sister and I always shared a special bond. Because she would often listen to me more than our other siblings, I was the go-to girl for certain conversations and for the trips out and about that were her only real contact with the wider world.
Today, as a permanently busy adult with responsibility for my son, I still do what I can to help my sister, asking her out on trips, either alone or with my friends, and finding short courses or interesting activities through the local authority’s ‘local offer’ service. My sense of responsibility for her has increased as I have matured, and my awareness of societal expectations and norms have grown. I worry about what the future holds for my sibling, and about my mother’s ability to care for her as they both get older. Contributing where I can, and worrying when I cannot, could be seen as burdens, but I refuse to accept them as such. They’re just a natural part of being a big sister.
Strength and resilience
Growing up with a sibling who has autism has, in many ways, been very good for me. The almost daily family readjustments needed to cope with adversity around my sister’s autism taught me to practice and appreciate resilience at an early age, gifting me a valuable ability to bounce back from difficult situations. Less obviously, my lack of understanding around autism required me, at a very early age and without conscious effort, to ‘bracket’ my personal experiences as a way of more objectively observing the behaviour of others. I am convinced that this process has played an important, positive role in my emotional development.
Siblings of Special Educational Needs (SEN) children have been found to display enhanced understanding of individual differences, and above average levels of empathy. A study conducted by Shivers (2019) also found that those with autistic siblings often show a heightened grasp of different perspectives, and that this ability coincided with the demonstration of loving and happy feelings towards the autistic sibling. These findings illustrate the central importance of empathy in sibling relationships that include individuals with disabilities.
My own experiences, as the sibling of a child with SEN, support the findings. Empathy and understanding towards others with special educational needs has been a prime influence on my career, which began in Special Education at the age of 17. They have also contributed to a rock-solid relationship with my sister that is free of conflict, rivalry and other conventionally negative aspects. Zaidman-Zalt, Yechezkiely & Regev (2020) state that having a family member with a disability makes typically developing children more attentive to the needs of others, and it is widely accepted that growing up with a disabled sibling can have both positive and negative impacts on ‘neurotypical’ children (McHugh, 2003).
Siblings of children with SEN can also experience a range of stresses and feelings that present potentially damaging emotional and behavioural challenges. The risk from these may be increased by the added responsibilities of helping with the sibling’s care or taking on extra work around the house (Milevsky, 2016). Parents of SEN children may also spend most of their time with their needy child. This will often reflect the SEN child’s care needs, but it can look like preferential treatment to neuro-typical siblings, and provoke an array of negative feelings, including anger, jealousy and resentment (Giallo et al, 2012). On a personal note, and with hindsight, I was a somewhat disengaged school student, which had negative effects on my progress and performance, but I do not believe my attitudes were significantly influenced by my sister’s ‘disability’.
Research suggests, the needs of siblings are often overlooked by both parents and professionals (Batchelor, 2019). Although people may agree that more support is necessary for siblings, the lack of support is evident. As this disconnect presents itself, siblings can become more responsible for the planning and decision-making. Having a sibling with special educational needs can impact an individual’s upbringing affecting their life.
Further research can identify these needs, increasing support while growing up. Creating awareness in schools, so individuals can have someone to talk to besides their peers. Talking therapies should be more accessible for these children alongside the parent and children with special educational needs. There are some brilliant charities dedicated to supporting the needs of siblings, but there are not many.
Government policies need to outline these challenges and set out a framework of support offered to these families with a child with special educational needs. My sister is important to me and has changed my life, being one of the reasons why, where, and who I am today.
Nevertheless, receiving more support in my younger life would have changed both of our lives.