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Living with Autism: A Sibling's Perspective

Updated: Jul 13

A blog post I wrote on my sibling experience back in 2015:


For a long while, my mum (a weekly blogger about my sister Chrissy) has wanted me to write a blog post about what it’s like to be a sibling to someone with complex needs (diagnoses of autism, a rare chromosome disorder, ‘moderate to severe’ learning disability, epilepsy, sensory processing differences, and some rather interesting behaviours that challenge). As the Special Saturday theme this week is ‘siblings’, she managed to bribe me into writing about Chrissy in exchange for doing my washing (thanks mum!). I can’t quite put my finger on why… but I’ve been very reluctant to write this post. I guess thinking about my childhood, and even adulthood, with Chrissy would mean me delving into some of my deepest (and sometimes darkest) emotions and memories. We’ve had (and still have) some extremely challenging times, but we can’t change the past. And we certainly can’t change Chrissy!


I spoke to a journalist recently who wanted to explore what it was like to grow up with a sibling with special needs. However, the woman had little interest in all the positive things I was excited to talk about. Instead, she wanted to know all the difficulties I experienced as a young child, which I was not ready to fully acknowledge at the time, and which got me quite frustrated. Yes, I very shamefully admit there have been times as a child when Chrissy has had 3 hour long screaming and violent tantrums (and times when I have come home to be greeted by an ambulance outside our house - there to sedate her) when I have thought quite honestly and bluntly “life would be far less stressful without you…” (but it would also probably be very boring!). As an adult, I find it painful to remember the incidents that prompted those feelings, but what makes me feel the most guilt, is that Chrissy just can’t help her behaviour… She was just born this way. I understand now that I am older that anger and conflict between siblings is 'normal' (I dislike that word, but I guess it helps to 'normalise' my own experiences), even between ‘typical’ siblings. I hope so anyway! Although this is just 'my normal' anyway, as I've never known any different. So I guess what I’m trying to say is that I don’t like to dwell too much on how having a sister with additional needs has impacted me negatively. Perhaps this is just my coping strategy, but this is the family we have, and it’s counterproductive to live our lives being resentful and thinking “what if…” If we did this, we wouldn’t be able to appreciate the best of Chrissy.


I find it much more comfortable and rewarding to focus on the many positives that have come out of having Chrissy as my “my big little sister” (although she is my older sister, our roles reversed during my early childhood, where I overtook her developmentally and physically). Her unique way of looking at the world is fascinating and endearing - like the time she stopped at a rusty old archway, smiled and said “it’s a rainbow mummy!” Her pure happiness watching The Snowman as if for the first time (every. single. day...) makes me appreciate the simple things in life (except when she’s screaming “we’re walking in the air!!” on repeat during a tantrum of course!). Chrissy has a great sense of humour – she is absolutely hilarious and I have many a humorous story to tell of our experiences with Chrissy. Unfortunately these usually fall under the ‘black comedy’ genre (‘you’ve got to laugh or else you’ll cry!’ kind of moments). But one of the tamer examples includes the time we were coming out of the toilets at a service station and Chrissy tapped a random member of the public on their shoulder and proudly announced “I just did poo!” with a big smile of her face (we had to swiftly whisk her away). Or the time I had to go to a&e with a broken arm and Chrissy’s colourful language (aka shouting a swear word on repeat) helped us skip the queue so I was seen very quickly (I wonder why!). Or the many times Chrissy has welcomed our house guests with “have you got diarrhoea?” (can you sense the toilet theme yet?), “you’re not very well are you?”, “have you got a sore eye?”, or “you’ve got grey hair!!” Or the time Chrissy had a huge tantrum on Christmas day when her stripping naked meant that everyone had no choice but to leave the room, until Chrissy quickly calmed down and said shocked and confused “where’s everybody gone?!”, unbeknown of her magical evacuation powers. Or the time we went to visit my nan whose dog had just died and we couldn’t stop Chrissy repeatedly shouting “woof woof never again!!” whilst giving a round of applause (with those wonderfully flappy hands of hers). She also very helpfully lets us know when she is up to no good, by the way she talks about herself in 3rd person – “Chrissy, get out of Alex’s room!” or “Chrissy, don’t you pull that cat’s tail again!” Poor Simba…


Most importantly for me, perhaps selfishly, she is to thank for my most deeply-held values. She has made me grateful of the advantages I have in life, rather than complain “why me?” She has helped me learn to appreciate life, live life to the full, make the most out of everything I do, and to never waste an opportunity, because I am lucky to have these opportunities available to me. Even just the small things, like going out with my friends… Last week, Chrissy was waving at me through the window from inside the house as I left to go on a night out. I got a lump in my throat thinking “poor Chrissy, practically a prisoner in her own home…” I’ve grown believing that all lives should have equal value, but unfortunately those with disabilities often do not. Why should Chrissy be locked away and not allowed to participate in society and activities seen as day-to-day to ‘neurotypicals’, just because she is ‘different’? I will never forget the disappointment and upset (and embarrassment and shame) I felt as a child as a result of judgemental comments made by members of the public when we have been in the community with Chrissy. These feelings turned to anger when I was a teenager and, luckily, acceptance and even an understanding of their ignorance now I am an adult (and they are the ones missing out on Chrissy’s fabulousness and these character-building life experiences anyway!). My experiences growing up with a sibling with additional needs have also taught me tolerance and patience (my mum might argue differently however hehe), and to not judge other people and families, especially parents/carers, as you can never truly understand what someone else has been (or is going) through, and how difficult life is at home for them.


What is significant for me personally is that due to Chrissy’s vulnerabilities (and my brothers – but that’s a story for another day!), I grew up with a deep empathy for those with additional needs and their family members. Consequently, I feel extremely passionate about supporting and improving the lives of children and young people, and their families. Chrissy (and my brother's experiences too) have inspired all of my education and career choices; my initial degree in Psychology, voluntary work, and roles as an Applied Behaviour Analysis Tutor and Special Educational Needs Teacher at a specialist school for young people with autism (with some of the most incredible young people I have ever met might I add, who hold a special place deep inside my heart), and an Assistant Psychologist for a National Autistic Society school (EDIT/update: and now my current job as an Educational Psychologist). I feel lucky to be so emotionally invested in my career, although arguably too much sometimes!


Finally, I recently found a letter from one of my closest friends and old next door neighbour, written to me when I was moving away. I got a lump in my throat reading the ending – “good luck with your future job as a child psychologist” (which she definitely didn’t spell correctly of course!). I was finishing year 9 (14 years old) at the time. Even from a very young age, I was aware of all the different professionals working with my family, but also aware of my own feelings of powerlessness to help. I vowed to myself that when I was older I would have a job helping families like us, and I would care more than anyone could. I felt tearful reading this, as it suddenly hit me that I am doing what I always set out to do as a child. And this has all stemmed from my sister Chrissy.


I think the true reason I’ve put off this blog is because I cannot find the words to describe how much my life has been enriched and fulfilled by having Chrissy in it, and I’m afraid that nothing I write will do her justice.


Alex


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#siblings #autism #epilepsy #rarechromosomedisorder #specialeducationalneeds #psychology

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