Siblings: The Autism Spectrum Through Our Eyes

‘Siblings - The Autism Spectrum Through Our eyes' Edited by Jane Johnson and Anne Van Rensselaer is an anthology of what it is really like to be a brother or a sister to someone on the spectrum.

The book is divided into 2 sections containing a total of 19 chapters. Each contributor has sufficient space to recall their experiences and to write about what they consider important. Too many books contain just snippets of opinions which the authors use to champion their own position and all too often a fragmented, skewed, and unrealistically optimistic picture is painted. An anthology helps to guard against this by allowing the contributors to use their own voice and because their statements are kept in context there is less likely to be any misrepresentations of their views.

I only have one child, so have not had to deal with trying to parent a neuro-typical child alongside a neuro-atypical child, and I can only imagine how hard it must sometimes be. I have, however, spoken to hundreds of parents and the issue of siblings is, as one might expect, repeatedly raised. Time and again parents describe how their neuro-typical child seems to have a tolerance, understanding and philosophy well above their developmental age, not all the time of course! In many, many cases the siblings seem to become adults with sensitivity, humanity and a level of kindness that assuages ones fears that irreparable damage must occur from being raised with someone on the spectrum. It would seem that the experience moulds them into decent citizens but that the simplicity of the joys of childhood are perhaps compromised.

Although the book is written principally for siblings, it is actually also very relevant to parents who feel as if they are desperately failing their other children. The book will more than likely reassure them.

The stories in this book very much corroborate the impressions I have formed about the difficulties and benefits of being a sibling to someone on the spectrum. The first story is written by two ten year old boys who coincidentally became best friends before both ending up with siblings on the spectrum. One has to wonder at their perspicacity, understanding and obvious love for their siblings. An unnaturally strong sense of protectiveness comes over which is troubling in that one of the boys is already worrying about the future and whether he will have to help care for his brother in adulthood. I was surprised at how much they took it upon themselves to be role models, to show their brothers how to behave in this complex world. They talk about how often their siblings embarrass them but even then, they are quick to defend them when others pass judgement. The boys also express how their brothers won't leave them alone and can be physically aggressive.

Most of the children have offered their list of tips for coping with autism in the family and their ideas are every bit as useful as most ‘experts' come up with and in chapter 6 Alyssa gives advice about how to help and support siblings showing, as so many of the contributors do, such a strong bond and sense of love and responsibility. In chapter 7, ten year old Cami admirably describes feelings of anger at the disproportionate amount of attention her sibling receives and also the ambivalent feelings, that many others have expressed, at feeling embarrassed by their siblings behaviour and fear that they are being associated with them and presumed to be the same. At the same time they feel angry at people who stare and judge their brother/sister and want to defend them.

In chapter 9 Chelsea begins with the sage advice 'Ease up! Don't be so hard on yourself. You didn‘t do this, and it‘s nobody‘s fault your brother or sister thinks differently‘ and she carries on with very useful advice that she has learned on the way and wished she had known at the outset. Chapter 11 is written by an adult and I found it to be very instructive because an adult has had an opportunity to look back on life, to reflect and to see the situation without the undoubtedly strong influence of the parental voice and position which I am sure heavily defines many of the children's accounts.

This account is perhaps more honest and realistic in that it acknowledges the frustrations, embarrassment, a sense of being hard done by without having to counter such comments with an immediate positive. The contributor also mentions the times when their sibling was teased or tormented and they failed to act through fear of themselves becoming victims. I felt that these normal human failings were as essential as the positive presentations. Children need to understand that they will sometimes behave in a way that makes them feel guilty or ashamed. However, once again, the most upsetting thing mentioned was when the contributor's brother was teased and misunderstood. I have genuinely been surprised by how strongly this has upset the contributors because rather naively, or perhaps egocentrically, I felt that this was the sole prerogative of the parent who bore all the pain when their autistic child was cruelly judged or taunted. I wonder if this capacity to have such empathy for a sibling is far stronger in this group than in normal siblings. Judging by my experience, I would have to say yes. This contributor later became a psychologist and stresses that the negative feelings are quite natural but that friendships and sharing with others can help and that ultimately most people feel that they have become better, more rounded people, equipped to cope in a world inhabitant by millions of different types of people.

Adam in chapter 12 is a dream brother and has always wanted to help his sister, even adorably, when little, promising him mum he would develop a ‘seizure gun' to control his sisters fits. In chapter 13 Missy, now an adult, is the first to mention being scared and I realised that many children must have felt fear because anything we can't understand tends to increase anxiety. Her chapter, like so many of the others, is full of things she has learnt and which might help others.

In the second half of the book, chapter 14 onwards, Susannah opens with a line that immediately gripped my attention because so many other children must have thought it, even if they never dared express it - 'when I was ten years old, I decided I wished my brother had never been born' . She writes very eloquently and honestly about her relationship and acknowledges that what she has with her brother it is a different kind of love . This half of the book was more appealing to me because the contributors were older and generally had a deeper insight. Because of their age they were able to make sense of both the good and bad things they feel and to accept both as ok. As in the first half, parents were often praised, and it is heartening to see that the children could recognise that although their needs were sometimes, of necessity, put aside by parents who had to deal with the immediate difficulties and frequent crisis of their siblings, that they had nevertheless been outstanding parents.

I am so pleased that the book included Hanna's story because at 15 she is right in the middle of puberty, coping with her own moods and mixed up feelings whilst having to look out for and care for her autistic, much younger brothers. She talks of her sense of isolation because friends cannot understand and their extended family long ago withdrew their support. At times she sounds like an isolated mother. She is honest and her adolescent pain and mixed up feelings come through ‘So how do I cope with autism,? Well most of the time I don't. ~these days anger and sorrow make up a good 70 percent of my emotions‘. This story is about how a young girl feels in the present and how much her siblings' autism impacts on her life and her opportunities to be young and carefree. However, even in her pain and angst, she clearly cares and is a wonderful sister.

I felt emotional through much of this book, in a bitter-sweet way because it exemplifies all that is wonderful about family. It is about the paramount gift we all have when we share our lives with someone of difference and are forced to learn to accept and love each other, just because we are family, and we have no choice and THAT ultimately is a tremendous gift. The message that having autism in the family brings out the best in each of us, permeates all the accounts and one senses it is genuine and not just a platitude. As the mother of someone on the spectrum I'd have to concur with each and every one of them. How proud all the parents must be of these children (including the grown up ones!).