Living with Autism: A Sibling's Perspective

A personal reflection on growing up with a sibling to someone with complex needs

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

For a long while, my mum (who blogs weekly about my sister Chrissy) has wanted me to write about what it’s like to be a sibling to someone with complex needs. Chrissy is in her 30s but developmentally presents at a toddler level. She has diagnoses of autism, a rare chromosome abnormality, a ‘moderate-to-severe’ learning disability, epilepsy, sensory processing differences, and some rather interesting behaviours that challenge - but she is obviously so much more than her diagnoses!

As the theme for Special Saturday this week is ‘siblings’, my mum managed to bribe me into writing this post 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 about Chrissy... Perhaps reflecting on our childhood, and even adulthood, together means delving into some of my deepest (and sometimes darkest) emotions and memories. We’ve had (and still have) extremely challenging times - but we cannot 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. I came prepared and excited to talk about the positive, but she was only interested in the difficulties I experienced. At the time, I wasn't ready to fully acknowledge that, so it left me frustrated and defensive.

Yes, I (very) shamefully admit that there were times as a child when Chrissy had three-hour-long screaming and violent tantrums when I have honestly and bluntly thought, “life would be far less stressful without this…” But of course, it would also 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 can’t help her difficulties - she was just born this way. As an adult, I've come to understand that anger and conflict between siblings is 'normal' (even if I dislike that word, it helps me 'normalise' my own experiences), even between ‘neurotypical’ siblings (I hope so anyway!). This is just 'my normal', having never known any different...

So I guess what I’m trying to say is that I don’t like to dwell too much on the negatives. Perhaps this is just my coping strategy, but this is the family we have, and I feel it's counterproductive to live our lives feeling resentful and thinking “what if…” If we did this, we wouldn’t be able to enjoy and appreciate the best of Chrissy. I find it much more rewarding to focus on Chrissy's strengths, and the positives that have come from having her as my “my big little sister” (although she is my older sister, our roles reversed during my early childhood, where I overtook her physically and developmentally).

For example, Chrissy's unique way of looking at the world is fascinating and endearing - she once stopped at an old rusty archway, smiled, and said “it’s a rainbow mummy!” She experiences pure joy watching The Snowman as if for the first time every time (every. single. day...), which 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!). And she has a brilliant sense of humour – she is absolutely hilarious and I have many a funny story to tell of our experiences with Chrissy (unfortunately many moments fall into the ‘black comedy’ category - 'you’ve got to laugh or you’ll cry!’ kind of moments.

Some of the tamer examples:

• Coming out of the toilets at a service station, Chrissy proudly tapped a random member of the public on their shoulder and announced “I just did poo!” with a big smile on her face (we had to swiftly whisk her away).

• At A&E with my broken arm, Chrissy’s colourful language (repeatedly shouting "f*** it!") helped us skip the entire queueing system (I wonder why!).

• Greeting house guests with things like, “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!!”

• Once Christmas day, she stripped naked during a tantrum, leaving everyone no choice but to leave the room, until she quickly calmed down, looked around, and asked very confused “where’s everybody gone?!”, unbeknown of her magical evacuation powers.

• Letting us know when she's up to no good by talking in the third person: "Chrissy, get out of Alex's room!" or “Chrissy, don’t pull that cat’s tail!” Poor Simba…

• Oh and the time we went to visit our nan whose dog had passed away and we couldn’t stop Chrissy shouting “woof woof never again!!” whilst giving a round of applause (with those wonderfully flappy hands of hers).

More than anything, perhaps selfishly, Chrissy has shaped my most deepest-held values. She has made me grateful for the advantages I have in life, helped me learn to appreciate life, live it to the full, make the most out of everything I do, never waste time, and to seize opportunities, because I am lucky to have these opportunities available to me. Even small things, like going out with friends are tinged with awareness of how limited her opportunities are… Last week, I got a lump in my throat seeing Chrissy wave at me through the window as I left to go on a night out, thinking “poor Chrissy, practically a prisoner in her own home…” It reminds me of how much society often excludes people with disabilities. Why should Chrissy be locked away and not allowed to participate in society and activities seen as day-to-day to most of us, 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 taken Chrissy out in the community. These feelings turned to anger when I was a teenager and, luckily, acceptance and even understanding of their ignorance now I am an adult (they are the ones missing out on Chrissy’s fabulousness and these character-building life experiences anyway!). This only further fuels my desire to advocate for inclusion.

Growing up with a sibling with additional needs taught me tolerance, patience, and empathy - thought my family might beg to differ sometimes..!). I also learned not to judge other families, as you can never truly know what someone else is going through. Chrissy's vulnerabilities (and my brother's, but that’s a story for another day!) inspired my career path. I grew up with deep empathy and compassion for those with additional needs and consequently became passionate about making a difference to the lives of families. This guided my studies in psychology, teacher training, voluntary work, and my current role as an Assistant Psychologist (EDIT: and now my role as an Educational Psychologist). My career is deeply rooted in the life I've shared with Chrissy.

Recently, I found a childhood letter from a friend written when I was moving away at age 14. The ending read, “good luck with your future job as a child psychologist” - spelling aside! Even from a very young age, I was aware of all the different professionals involved in both my siblings' lives, but I also felt so powerless. I vowed to myself that I would grow up having a job helping families like mine, and I would care more than anyone could. I felt tearful reading this letter, as it suddenly hit me that I am doing exactly what I set out to do - all thanks to my family experiences, and, of course, my wonderful sister Chrissy.

The true reason I’ve put off this blog is because I cannot find the words to describe how much I have learned from Chrissy, and how enriched my life has been because of her. And I’m afraid that nothing I write will ever fully do her justice - but I hope this comes close.

#siblings #autism #epilepsy #specialeducationalneeds #psychology