Chapter 6: Emily’s Story — A Sibling’s Perspective

I was five years old when my brother came into this world. I was so overly excited at the prospect of a sibling that my mother bought me a baby doll so that I could get used to being ‘gentle’ with my unborn brother. I already loved my brother so much that I wanted to choose his name, Max but when my parents named him Richard, I continued to call him Max for two months before finally conceding defeat.

Unlike most children with autism, Richard’s problems began from the minute he was born. I was protected from the fact that he was clinging to life by the smallest of margins. As a five-year-old, I didn’t understand why he was covered in wires and breathing tubes and I didn’t understand the quiet, despondent mood of everyone around him. I was just proud to call him my little brother. This feeling of pride has remained with me for eighteen years.

I don’t remember being sat down and told about Richard’s problems however, it was not hard to figure it out. I knew that babies laughed, cried and played. I also knew that they didn’t have a therapist who came to their home every day to help with exercises that made them scream. I knew they didn’t kick, bite and scream when they wanted something. I knew that something was ‘different,’ even if I was too young to know what that difference was. It used to pain me to hear him cry and scream in response to therapy. After all, he was so little and I didn’t understand the necessity or importance of these strange procedures.

I remember very clearly that he would stop crying and fighting the physical therapy if I stood by his head and let him know that I was there. That was my role. I was now a part of his therapeutic process.

When Richard was young, he was loud, energetic and impatient. As he grew older, he kept these traits. Because he could not always verbalise his needs or wants, he would cry and yell. This scared other children, who would run away, not wanting to be near him. Seeing this, tore me apart but there was one incident in particular, when I was eight years old, that I have never forgotten. We were at a Christmas party and Richard was running around having fun in a way that only he knew how. A girl my age, whom I had known my whole life, asked me if Richard had a ‘disease.’ I had honestly never felt more anger in my entire life. It was at that exact moment that I made the decision to choose my brother over anyone else.

From about eight months of age, Richard would have therapists coming in and out of our front door. As he grew older, these hours continued until he was undergoing intensive behavioural therapy for a minimum of six hours a day, six days a week. Richard’s problems and therapy took up much of my parent’s time and attention, particularly my mother’s. Although my parents balanced their time between us beautifully, I could not help but feel he was their ‘favourite’ child. This started from the day Richard was brought home. Whenever I so much as coughed at home, by doctor’s orders, I was sent to my grandparents’ house to sleep there, for fear that Richard’s immune system was too weak to fight off the common cold. I was five at the time and, although I loved my grandparents, when I was sick, the only person I wanted was my mum.

I also remember when I was about eight years old, my parents took Richard to America for therapy. I stayed with my cousins and my grandparents. Although my mother explained to me that it wasn’t a ‘holiday’ and I wasn’t missing out, I could not help but feel as though they had gone on a family vacation and neglected to invite me. Looking back now, almost fifteen years later, I understand the financial and emotional sacrifices my parents made for my brother’s well-being and I am the proudest daughter in the world.

Because of my young age and limited knowledge of autism, I was not sure why it had ‘happened’ to our family. Did this happen to a lot of kids? Was it my fault? Why did it happen? I used to sit in my room and think of the answers to these questions until one day I remembered something which caused me to feel a lot of guilt and shame. For a few months, until I had the courage to ask my mother, I thought that everything was my fault.

When my mother was heavily pregnant with Richard, she took me to the local park. I was on the tyre swing and she was pushing me. I was flapping around like any normal five-year old, limbs flailing everywhere, when my leg kicked her stomach. It wasn’t hard but it wasn’t soft. In my young mind, I honestly believed that I was responsible for his problems and that my kick had caused the autism. I asked my mother about it and she cried. She reassured me that this small incident had nothing to do with his diagnosis but I wasn’t convinced. For an entire year I believed that I was to blame.

Looking back, do I think this affected me? Yes. Did I act out as a means of getting attention? Definitely. I believe it affected me more than I realised. After all, before Richard entered our lives, I was a five-year-old only child and only granddaughter. It is safe to say I was always the centre of attention. Understandably, Richard’s birth changed this. I was extremely lucky at school in that another girl in my class also had a younger brother with autism. In fact, his was more severe than Richard’s. On the odd occasion that anyone dared to speak ill of our siblings, we would stick up for each other.

You could say that I was aggressively defensive about my brother. I used to snap at people who made inappropriate comments and hold grudges for years. But looking back, can I blame them? I can’t. After all, if Richard had never entered my life, I can honestly say that I wouldn’t have known what autism was until I was eighteen years old and studying at university. Isn’t that terrible? A diagnosis that can affect one out of 68 children is barely spoken about or explained! That statistic alone is eye opening but now factor in the siblings of these children. So many children are affected by autism, yet at school we were told nothing about it and I was left, as an impulsive eight-year-old, to explain a diagnosis to my peers that I didn’t fully grasp myself.

When I meet new people, I tell them about Richard’s diagnosis immediately. It’s almost my way of saying, ‘This is my situation, we come as a package deal and if you can’t handle him then thanks, it was nice to meet you but you can go away now.’ This refers to friendships and relationships. We are a package deal; he is my best friend and if you don’t want to know him and his story, then I don’t want you to be a part of my life. Regrettably, I have lost a few friends along the way with this philosophy but the ones who have stayed are wonderful. The ones who do care are the ones I want to surround myself with. I am incredibly lucky that I am friends with some beautiful people and I am grateful for their friendship, kindness and support.

My relationship with Richard is simple. He is my best friend. The end. In many ways it’s a normal sibling relationship; he steals my things and calls me fat and I pull the doona off him when he is trying to sleep in and run away with it and he calls me when he clashes with our father and so on. One incident I will never forget describes our sibling relationship perfectly. When Richard was young, his favourite number was the number 50. He just loved it. We don’t know why but he did.

When I was about twelve years old, I spent my pocket money on a cheap pair of hoop earrings. Cheap, yes but in my pre-teen mind I thought they were amazing. One day I came home from school and Richard was on my bed. He had bent one of the hoops into the number 5 and was holding them together grinning at me saying, “Look Em….50!” Looking back I laugh and realise how cute he was, he was so proud of himself, but at the time I remember wanting to kill him. But hey, what are little brothers for?

In many ways, our relationship is very special. It’s not something I can easily explain. When he’s upset, my insides knot themselves. When he achieves something, I do an inner fist pump and am overcome with pride. When he does something inappropriate, I sit him down and try to explain to him why it was wrong. We are basically a team. When one of us succeeds, we both do. I feel very lucky that I have this relationship with Richard because I know many siblings of children with autism don’t. Many siblings can become angry, frustrated and resentful toward their brother or sister with autism. Now don’t get me wrong. There have been times when Richard’s behaviour has embarrassed me greatly in public, especially in my younger years and I would ask my parents, “Can we please just go home?” This is not unique to our relationship. Many siblings without autism can and do embarrass one another; so often that’s what little brothers do. My advice to these siblings struggling to find themselves and struggling to differentiate themselves would be to just embrace it. Let’s face it: At the end of the day, autism is a chronic condition. It can improve but it’s not going anywhere anytime soon. Believe me, I know how hard it can be. But more often than not, for a child with autism, siblings are the only friends our brothers or sisters have. It was when I was old enough to take Richard out by myself and drive to places without our parents that our relationship really flourished. I love including Richard in many of my social outings and I even design some of them around his likes and needs. It was very difficult for me to accept a university placement so far from home and I seriously considered not accepting the offer but my parents insisted. My big concern was that would Richard miss out socially if I could not take him out.

Every family has its problems. Every family argues and every family has its own unique challenges. A few years ago I remember reading somewhere that fifty percent of married couples with children on the autism spectrum will divorce. That is a huge statistic. Thankfully, our family is not part of that statistic. However, Richard’s diagnosis has still put pressure on our family dynamics. My mother gave up her career in marketing to throw herself fully into Richard’s confusing and intensive therapy program. Mum loved her career and she had worked so incredibly hard to get to where she was. Being the successful, driven woman that she is, this was no doubt difficult for her. Now I can see that it would have been quite a sacrifice to leave that glamorous life in the cosmetics industry behind. However, I never once heard her complain.

I also feel as though my younger brother’s diagnosis changed my relationship with my parents. I feel as though at times their patience was taken up by him, to the point where they would become very snappy at me. I remember one incident when Richard was about six and I was eleven. I’d left my colouring pencils and pens on my desk and he took a marker and drew on his wall. My parents blamed me and scolded me excessively. I just didn’t understand why. Aren’t you supposed to leave your markers on your desk? Where else are they supposed to go? Why wasn’t he getting in trouble? Why was it always me? Now at the age of twenty-three, where I am more actively involved in Richard’s life, I understand. Patience runs thin and is gone in a heartbeat. Drawing on the wall can be the last straw after a series of meltdowns, a gluten-free diet that meant cooking separate meals every single time we had a meal, six hours of therapy and tantrums and a bath that turned our bathroom into an indoor water park.

Through the lens of a child’s eyes, growing up there were times I thought I had a rough relationship with my parents but looking back now over the years I have come to discover that it is actually a very open and loving relationship. Once I was old enough, I was consulted and included in discussions about Richard’s problems. My input and opinions were respected and requested to help find a solution.

Our relationship probably would have been different if Richard didn’t have autism but then again, it would have been different if any variable was changed. Looking back I can’t see that it could have been any other way. We have a very strong family bond because we have had to fight hard to be where we are. We are never sure of anything in life but the one thing I know for certain is that no matter where I am or what I am doing, my parents will always be there for both my brother and I, no matter what. They have supported me in all of my goals and dreams and always encouraged me to do my best. They expect no less of either Richard or me.

What frustrates me the most about my family’s situation is the lack of support we have had from some who are close to us. My parents are the type of people who will readily go out of their way to help others and those who know them will agree with this statement. However, when it came to Richard, there were people who just put us in the ‘too hard’ basket and this came from those who we least expected it to come from. I remember having a discussion with Mum about this issue and she was so surprised that I was aware of it. I replied, “How could I not notice? We were all excluded, even me!” However, as we have come to discover, the people who are there when things go poorly are the most important people in your life. Although there may only be a handful of them, we are grateful every day for their support and friendship.

The Proudest Moment of My Life

When I look back over all my achievements, both academic and athletic, nothing compares to how I felt the moment when my little brother, who we were told would never walk or talk, marched onto the stage at his high school graduation. When his name was called his entire grade clapped and cheered for him and when he received his certificate he grinned so hard I thought he would be stuck that way forever. He had done it! So many people don’t complete high school yet there he was, this eighteen-year-old with every possible obstacle thrown in his way and he had done it. Was it a rocky ride? Yes and there were so many times I was nervous about whether he would finish but in the end he did!

Although I am so proud of him for graduating from high school, with that pride comes a huge sense of sadness and worry. This worry stems from Richard’s own worries about his situation. He knows that school is over and he knows that this means uncertainty for the future. He was very emotional in the months leading up to his graduation, often crying unexpectedly and being difficult to console. Despite including him in outings with my friends when I can, I know he doesn’t have friends of his own. I know that he gets frustrated and bored. I know that he desperately wants to go to university like his big sister. When I go out with friends and he isn’t there, I often feel so guilty that I come home early. And when I’m at university and he calls, I sometimes tell him that I’m at home, as I don’t want him to ever feel as though he is missing out. I don’t want him to feel different. These worries over his social well-being and what the future holds for him keep me awake at night more often than not. I’m still not sure how to overcome these sensations and I’m not sure I ever will. He’s my little brother and I will always worry about him.

My Current Perspective

At the age of twenty-three, I can now see that my parents did their best to love us equally by giving us what we individually needed; and they succeeded. Although as a child it seemed that more attention was given to Richard, that’s what he needed at the time. But it was not always the case. When I needed attention and guidance I received it. There were many meetings at my school also! Mum and Dad did their best to ensure that I did not miss out on anything; the only thing was that they could rarely both be with me. It was usually one or the other, as one of them always had to stay home with Richard. I was actively involved in sport throughout my entire school career and my dad would drive me all around the country to get to my basketball and touch football games. He now does the same with Richard. In fact, he coaches Richard’s Special Olympics basketball team.

As for the ‘family holiday’ my parents and Richard supposedly took without me, only last year Mum and Dad organised a family trip to America because they wanted to keep the promise they made back then that we would all go together one day and not for therapy or treatment but for a fun holiday! Throughout the entire trip they joked that they were making up for not inviting me on that trip fifteen years ago. We had a blast! We did the usual touristy things like visiting Disneyland, Hawaii and New York but the real highlight was visiting my dad’s cousin and her family in Washington D.C. I never knew we had such hilariously funny relatives! I can’t wait to see them again!

Richard has shaped my life in more ways than he will ever know. He has inspired me to pursue a career in psychology and I am currently studying for my master’s degree in clinical psychology. I am hoping one day to specialise in autism spectrum disorders, with a focus on the building of social skills and communication. Richard has literally shaped me into the person I am today. He has taught me the meaning of kindness and love and I know that he will always love me despite my flaws. As an adult, reflecting on our journey so far, I am taken aback by how far he has come. From that small, helpless baby covered in wires, to this eighteen-year-old man with a beautiful soul and the heart of an angel.

I have been asked many times in the past, perhaps rather insensitively, if I ever wish I could change Richard’s situation. Would I change the bullying he was subjected to or the isolation he felt throughout school? In a heartbeat. Would I change the stigma that comes with an autism diagnosis? Definitely. Would I change him? No. He is who he is and if he were any different he wouldn’t be my brother. That child who never really fit in is going to go so far in life; the world is going to have to sprint to keep up with him. And when he achieves everything he wants to in life, I’ll be the one standing next to him cheering him on.

Richard, I love you.