Living with an Autistic sibling

My sister is 2 years younger than myself and has been diagnosed with Autistic Spectrum Disorder, including repetitive and receptive language disorder with moderate learning disabilities. She was originally diagnosed with speech and language delay before the diagnosis of Autism. My mum received a folder telling her about the diagnosis and sent her on her way with no advice or guidance, so the majority of our family’s learning was ‘on the job’ so to speak.

As someone who has grown up with an Autistic sister, it has been a very interesting and often difficult experience (to say the least!). I wanted to share my experience of living with an Autistic sibling and the important life lessons I have picked up along the way. I will say that this will all be my own experience and most might only be applicable to myself. Of course it’s important to note that Autism runs on a spectrum so not all individuals on the spectrum act in the same way.

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1. Learning to put others first from a young age

Early childhood was absolutely the most challenging time. An abundance of screaming tantrums from my sister, biting other children, throwing and breaking stuff, put a strain on our parents as they did not know how to handle her behaviours. As a sibling of an Autistic child, you quickly learn to put their needs above yours and understanding they need the attention from parents more than you do. I did not understand why my sister would act out like this, but as a result I knew that I had to behave myself and limit the demands placed on my parents so they had less to deal with.

2. Being one of the only people to understand her

Since my sister’s condition gives her a speech and language delay, when she used to speak as a child, she often did not make much sense and found it difficult to be understood. However, I always remember being able to understand most of what she was saying and didn’t understand how other people didn’t get what she wanted. I’m not sure whether I just spent too much time with her or it was some weird sisterly bond but I became my sister’s translator. According to our mum, I would often say stuff like ‘She said she wants a biscuit’, so as helpful as I was, I feel I may have used my translator skills to my advantage when it suited me!

As well as being able to understand her speech, I can always know what will make her laugh. If I send her a funny video, I can always pinpoint the moment that she will find hysterical even though it might not necessarily be the part that was supposed to be funny in the video. The context of whatever I show her can be irrelevant but she might find the facial expression of the subject hilarious.

3. Learning to laugh at embarrassing times

I remember when we were both at primary school in assembly. My class had entered the hall first and sat down, then my sister’s class walked in and I spotted her straight away as the one kid that had ran into the hall in just her knickers. My class started giggling and pointing out to me that my sister was there in her knickers and I just wanted to die of embarrassment!

Looking back on the embarrassing moments my sister caused me as a child, I now find them hilarious. I have learnt that when moments like that come up again when we are in public, (thankfully she doesn’t go to such extremes nowadays!) I just have to embrace what’s going on and try not to feel that others are judging her.

4. Finding a common interest with her

In as many ways as my sister and I are different, we are also very similar. Once finding what we both enjoy, it’s easy to spend time together. I’ve found that my sister, as well as myself get very nostalgic and we enjoy reminiscing in board and video games we played as kids. I think because as much as we both frustrated each other as children, we would always get on better when playing games together. My sister was always a boss at video games so I would often just watch her play and I would be her cheerleader. I think we both like to capture these childhood moments as adults.

Reminiscing in Kerplunk

My sister is also fascinated with dates, specifically in history. We spent a good couple of hours recently with our youngest sister discussing King Henry VIII’s life and she enjoyed researching how all his wives died and how old they were, and what year they died. It sounds morbid but it’s all out of her genuine interest.

5. Being extra protective and recognising vulnerability

Throughout her school life, my sister has faced bullies because of who she is. Because people may look at her and think she doesn’t look like she has a disability, this led some people to believe that she was just ‘weird’ and this warranted being picked on.

As I was very painfully shy at school, I feared, and still fear confrontation. However, I accepted that I needed to put my fears aside to stand up for my sister. I often messaged these kids and I had to point out to them that my sister has a condition and that how they were acting was unacceptable.

Even now as adults, I have had to have a word with crappy boyfriends of hers who were clearly taking advantage of her vulnerability and not treating her right. My sister finds it hard to recognise people’s intentions and can’t see through lies that seem obvious to ‘neurotypical’ people due to the social impairment that comes with Autism. Therefore, as family, we have to be protective over her and get to know people she spends time with as it’s terrifying to know that she will trust anyone who is nice to her.

6. Autistic people are empathetic too

It is a common misconception that people with Autism Spectrum Disorders lack empathy and are Sheldon from The Big Bang Theory type characters who show little to no emotion. I would say that my sister is the most emotionally expressive person I know. She shows pure joy and happiness, compassion, genuine concern and upset, and finds it hard to fake these emotions so you know it’s real.

For her 21st birthday, a load of us went out for a meal and surprised her with this amazingly hand-made Beauty and the Beast themed birthday cake, which was a big interest for her at the time. The look of absolute shock and joy on her face was beautiful to see. After I said my vows at my wedding this summer, I look over to my sister and she was crying with happiness for me. When I have been sad or felt ill, she has shown compassion and tried to help me. Similarly, when our dad decided to end a relationship with us due to his apparent lack of compassion, my sister was devastated, although she tries to hide it. Therefore I can say that my sister has a wide spectrum of emotions.

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At my wedding in July

7. Wanting to help people who are Autistic

After growing up with an Autistic sibling, I went on to study Psychology with a focus on education and Autism because I wanted to find out more about my sister’s condition. I then went on to be a support worker for adults with learning difficulties because I felt passionate about wanting to help people who have struggled like my sister.

I think that growing up in a household with learning difficulties and other conditions makes you empathetic since you have real-life experiences with the conditions and can use this experience to be effective in aiding others. In a world full of people who want to be rich and successful, a career dedicated to being kind to others makes you the richest person.

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8. Accepting that she might need support her entire life

Since Autism is by no means limited to childhood, it’s important to consider the next steps for an adult with Autism. Now my sister is in her twenties, I am learning to support her in making good decisions but to not pressure her too much since it’s important to remember she is still an adult.

I supported my sister with getting a full-time job. I assisted her with the application and prepped her for the interview process. She surprised us all with sticking with the job for over 2 years so far. The amount of independence she has gained over the last few years has been astonishing. She still needs support with other aspects of her life such as managing her finances and she might always need someone there to make sure she is safe. I don’t know how independent she will be in future years or whether she will be able to live on her own or with a partner. I jokingly told our 13 year old sister that she will be living with her when our parents are too old to look after her (which was met with a look of scepticism and annoyance!).

 

Whatever happens, she is very lucky to have a strong support system around her and many people who care about her. Without sounding soppy, she is the bravest and funniest person I know and I wouldn’t wish for her to be any other way than who she is.

3 thoughts on “Living with an Autistic sibling”

  1. This is really beautiful Liv., and well written. The love for your sister really shines through what you’ve written. I can also relate a lot with my brother.

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  2. This is lovely Livvy and so insightful and although she is very lucky to have us all around to help her I know it’s you who she looks up to the most and loves spending time with she is a really lucky girl to have such a brilliant sister . X

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  3. This beautiful Liv’s,while reading this made me think how lucky we are to have Katie in our life she is so so special to us, she gives out so much love , but also we are very lucky to have you in our life, thank you for beening you , we are so so proud of you and who you have become xxx

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