A family affair.
This post started out as a request for help from a family, I have left it for months, rewritten it but have decided to publish it. If you are offended please contact me and I will edit. After much reading and attempts on my part to find a way to support I have to admit I really did not feel confident to advise. However it did raise the thought in my mind that there are different ways to approach the issue, and different ethical considerations – Try to change the child to fit the family or reflect and change the family/themselves.
If you want to change the child don’t read on.
Trigger Warning: The research is hugely slanted from the NT point of view. The Author does not have a diagnosis of Autism. Use of deficit model is referred to at times.
As I was reading around and talking to people I couldn’t even start to comprehend how to advise people. The interactions, bonds and relationships of a family unit are so diverse that what may help one family will insult another. Much research seems so clinical and detached from humanity, even the wording leaves much to be desired One study’s results stated the “deleterious impact” of Autistic siblings on families (I’m looking at you Fisman). There are hardly any #actuallyautistic articles/blogs/research available. It is 2018, It is time to look deeper and with much more acceptance than a deficit model. Research should now be focusing on relationships and interactions, a two way street – a family is a system and no one component has an impact without being impacted on in turn.
After I had written this I found this guide which you may well find useful. Family is not about interventions, advice or phone calls from people who don’t know what you go through everyday, who don’t know the stresses, joys, bonds or strengths of your family. Please don’t try to overanalyse one member but think about the whole.
It’s about family, dynamic environments, emotions, challenge and love. It is about self-confidence, passion, support networks and acceptance. Looking not for difference but celebrating how you adjust and adapt to the challenges of life. Every family is unique and the family unit is a result of millions of interactions, stresses, pressures and a myriad of other factors.
So this post is not a top ten list, no top tips. It is just my thoughts and observations from 10 years in special education and some of the findings from the research I read that may be useful to others.
I have spoken to the relentlessly positive older sister who wants nothing more than to help Autistic children as she has seen the challenges facing her brother. I have seen the sacrifices people make for each other. The blossoming of relationships as each sibling matures. A family has unique characteristics that can be known only by looking at the relationships and interactions among all members (The Gale Group, 2003) not just the Autistic child/adult.
Reality not Research.
I’m not totally against research! The study of families is so hard. Think about how dynamic the relationships are in your life. Interview me one week and I’m happy, another week would find me despairing about how I couldn’t get my daughter to wear shoes. So I will quote here and there from studies, however some of these base their conclusions on only 6 individuals.
A key finding throughout the research is that positive relationships are an important source of social support for children and are associated with lower levels loneliness in children. For many Autistic children the only social aspect of their life outside of school is with their family. Many families are desperate to see their child build friendships but the barriers in society are still great. Therefore the sibling relationship becomes all the more important.
The challenges are huge, disabled or neurodivergent children may be less likely to initiate interactions with their sibling than neurotypical children so facilitated play and determination on the part of the sibling may be needed; but no study reflected on how aversive the interaction may be and how constant attempts to interact may cause their sibling additional stress.
It may be for this reason that siblings of children with disabilities tended to be more prosocial and nurturing towards their brother or sister (Abramovich et al., 1987) There is lots of mention in the research as well as anecdotally that the roles of siblings vary over time and do not follow chronological expectations. There are issues here in reality with infantalising a child and not letting the child develop in their own time.
It has been suggested that a sibling may take on the role of carer at an early age and be expected to model behaviours generally reserved for much older children. This additional responsibility placed on them leads to the suggestion that professionals working with the families need to monitor the sibling relationships and refer for support if required (Fisman, Wolf, Ellison, & Freeman, 2000).
The Blame Game
Sibling relationships extend into adulthood but their character is generally established in the early years. It is quite likely that the nature of the relationship contributes to the overall psychological development of children, their self-esteem and wellbeing.
I also think that there is a tendency to attribute general sibling rivalry to a diagnosis leading to siblings being blamed for reacting to things they haven’t yet developed the skills to rationalise.
Gamble and McHale (1987) identified a trend for siblings of neurodivergent children to report using strategies such as blaming another person to cope with stressful sibling situations. Undoubtedly there is an element of frustration and sense of failure and maybe rejection, this goes for both children.
Autistic children and their siblings reportedly spend less time together than siblings of children with Down syndrome (Knott et al., 1995). This reduces further as the children grow up older children generally develop meaningful relationships with friends and girlfriends and will spend more time with them than with at home with a sibling. My students who communicate without words yearn for companionship and interaction but never seem to be invited to take part in research like that cited here so there is definitely an opportunity here to dig into this deeper.
There also seems to be pressure and expectations that siblings should try to keep themselves calm and non show these frustrations Gamble and McHale suggest that this could lead to depression and other emotional issues. This is supported by Ferraioli & Harris (2009) who state “The presence of a sibling with a disability may also be associated with increased risk of… depression and anxiety”. However Naylor & Prescott (2004) state that the negative consequences more often stemmed from the typical siblings’ worries and concern ABOUT the disabled sibling, not the results of the disabled sibling’s behaviors.
From working in the field of SEN and having the privilege of hearing many Autistic speakers and advocates I feel that Autism awareness is moving towards acceptance of the individual. we are hearing less about stereotypes and generalisations. The “rain man” stereotype seems less prevalent. It is worth reinforcing that this is your family no one’s opinion of how that functions is as important as what that family means to you.
When they are younger Autism is defined by what the sibling can see or hear. Even in later childhood our beliefs and understanding is defined by direct experience. Hidden disabilities may cause confusion; as illness to a young child is a bug, or virus. So how adults present information must be clear to reduce any fearfulness a child may feel.
Children may experience frustration with rejected or ignored attempts they make to interact with a sibling especially if they do not understand the core social and communication deficits of Austism. Roeyers and Mycke (1995) found that siblings with greater knowledge of Autism had a more positive relationship with their sibling
With a mature understanding of the implications of autism, older children face an interesting mix of sophisticated and child-like concerns. In a study of one sample of children (mean age = 10.5 years), participants reported having fun playing with their Autism sibling, but expressed concerns about embarrassment, and their sibling’s future, if you follow the #actuallyautistic community this definitely works both ways.
The data offer only a few hints at what might determine a sibling’s response to autism in the family or what one can do to support. Some studies reported that siblings tend to do better in bigger families; in two-parent families rather than single-parent. There also can be better outcomes in families of more financial means (A family with an Autistic child can expect to spend £6000 a year more). as we all know our circumstances change over time and the research is merely a very limited snapshot into a phase of a families life.
Therefore advice should never be about getting the Autistic child to tolerate their new younger sister or expecting the older brother to have infinite patience. Relationships evolve and all children develop within a highly dynamic environment of which only ourselves are under our control.
This must be frustrating after reading this article but I believe the only real advice anyone can give is to find the value each family member holds, reflect on it and seek support if required.
Actually Autistic Voice (Please share with me if you can find more)
From the Siblings Point of View
Sophie’s Trains – The Myth of the martyr autism Sibling
Freya O’Hora – All about autism
Abramovitch, R., Stanhope, L., Pepler, D., & Corter, C. (1987). The influence of Down syndrome on sibling interaction. Journal of Child Psychology and Psychiatry, 28, 865-879.
Eisenberg, L., Baker, B.L. and Blacher, J. (1998). Siblings of children with mental retardation living at home or in residential placement. Journal of Child Psychology and Psychiatry, 39: 355–363.
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Naylor, A., & Prescott, P. (2004). Invisible Children? The Need for Support Groups for Siblings of Disabled Children. British Journal of Special Education, 31(4), 199-206.
Roeyers and Mycke (1995)
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