It’s not uncommon for brothers and sisters of autistic people to find themselves as part of an invisible majority, in view of our invisible disability. With siblings on the spectrum usually requiring the lion’s share of attention, brothers and sisters of autistic people can report feeling withdrawn and isolated (whilst, in contrast, 58% of autistic people will see significant increases to their social ability, reduced stress and less obsessive tendencies, all thanks to our kin).
The thing is, siblings of autistic people are some of the most brilliant, caring and steadfast people you will ever meet. So, despite this trade being more than one-sided, it is unlikely that you will hear a bad word about it from siblings of autistic people, due to their ever-considerate and ever-selfless nature.
Yet how can we, as a community, learn to care for these people who do so much for us, if they won’t admit there may be problems. Well, today I have roped in my sibling (a sister who is 3 years older) and told her to hit me with the truth of what it’s like growing up with a sibling on the spectrum, in the hope that this will help us to understand how autism affects our siblings and what we can do to help
An Interview with my Sister:
James: Okay, so let’s start at the very beginning. Can you remember how you were first taught about autism?
Lizzie: This could be wrong, but I think I first learned about autism when you were diagnosed and I was given a book. The way it explained things was very ‘classic autism’ at the time. It said that you would have no empathy, no eye contact, no social skills, show no love at all and it said that you would become aggressive if you didn’t understand something.
Then I was also shown Rain Man to learn about autism, because why wouldn’t I growing up in that period of time?
In a perfect world, I would have liked a checklist of the things that could happen, so that I could learn how to react to them better and help you. I wasn’t really aware of how much my life was going to change and I wish that had been made known sooner.
James: Do you think that not knowing might have been part of a bigger plan? A kind of ‘ignorance is bliss’ scenario?
Lizzie: Eeeeeeeeeeeeeeerm….
James: You can be honest.
Lizzie: Then NO! I don’t think it was a case of ignorance was bliss. I should have been told that your view of the world is different, someone should have said ‘James sees life differently’ or ‘James responds differently than others’ – but I really didn’t know anything at the time. I only realised this when I was much older.
Actually, there may have been a point that I had someone say something like this to me, but I was young and so I wasn’t going to just hear it once and be like ‘Ah I get that now’. It needed repeating. I mean I still hear things in the day-to-day about your odd experiences and, to me, that’s still new information.
James: Did you think you had a kind of responsibility for me?
Lizzie: I definitely felt like you were my responsibility above all else, including myself, because I knew that, if you were okay, then I would be okay. It’s kind of selfish but, if we had plans for the day that I was really looking forward to and then you self-destructed, we probably wouldn’t be able to do them. So, I had to keep you happy and content to avoid that risk.
It’s in my personality to be like that anyway but, I wonder if that was nature or nurture, because you really did need me. You needed me to translate other children to you; you needed me to translate why you weren’t talking to them; they needed me to tell them to run away and save themselves if you were heading for a meltdown.
The other day, I found my diary that I wrote at school and it’s all about your behaviour. There is nothing in there about me. There are small bits about how it made me feel but it’s more like ‘James gets a gold star today because he got angry and then said sorry and ate a biscuit’.
James: How did you foresee your future then? Did you ever think about what your role in my life would be like when we were older?
Lizzie: I probably thought that I would play a very, very active role in your life: keeping your routine the way it needed to be for you to be happy. I thought that maybe you would live with me or live close to me and that you would always be around – not that you would run away to London and leave me here and that I’d be struggling to live independently instead!
Obviously, I had seen Mum and Uncle Dom (our uncle with Down Syndrome), and Grandma and Grandad with Uncle Dom and, although it is very different situation, I probably thought ‘Right well James also has a learning disability, so he’ll probably end up in the same pattern’.
James: And how would you say you saw your role in the family?
Lizzie: I know this is a really dramatic way to think about things, but I felt like that if I wasn’t helping or wasn’t a beacon of light that drew everyone’s attention to positive things, then life would crumble apart and we would never see each other again. That wasn’t necessarily a bad thing though, as it made it so I had very good times with each of you, but often separately and rarely all of us together.
Stockport – where Lizzie and I grew up. © MARK WAUGH
James: So, I don’t know if you know, but one of the recommended tactics for parents, when it comes to looking after a non-autistic sibling, is that you’re meant to give them time alone to just be themselves. However, one of the things I thought was quite interesting about us is that we went to the same school, so that time alone was kind of limited. How was that for you?
Lizzie: When we were at school together it was very much like when we were at home together. My focus was very much on you and making sure you were okay. I would spend breaks trying to listen in to the dinner ladies nattering because I knew if you had had a meltdown that day that, that’s what they would be talking about. Nobody would purposely tell me anything, but I wanted to know, and I would constantly try to find information about how you were all the way through the day. I was very distracted.
James: And eventually you did change school when you were 8 years old. How did this change things?
Lizzie: Yeah, so, when I was taken away it was completely different. I had to learn how to fill the time without you there and think about myself. I think I was probably less distracted and I was a lot less tired. I did a lot more learning which is good, because that is why you go to school, but I did miss you though and I found that difficult. I never felt like you were the reason I went to a different school.
So, I missed you and would happily have gone back if asked. I don’t think I can say that for the rest of the school though…I think some of them would have been very glad to see you go instead – haha.
James: I can’t blame them! But, honing in on what you said there, you said that you were ‘taken away’. Is that how you felt? Did you feel like you had been plucked out of your class and sent away?
Lizzie: I was really excited to go to a different school because, let’s be honest, I was always jealous of anyone who had more attention that me so, having the whole leaving experience early: people signing my shirt, my autograph book, everyone coming to say goodbye just to me – that was perfect!
James: What was your understanding of the situation?
Lizzie: I think I knew the basics of why I was moving school. That it was to do with you, that it would help my education and how it would be a better fit for me. It wasn’t something I dwelled on though, because I was really excited to have that last day before everyone else and have a day that was all about me.
Lizzie in her school uniform and me in my… washing basket?
James: So, when you were away from me, when you were in the new school or with friends or alone with one of our parents, what did you like to do during this ‘no-autism’ times?
Lizzie: I liked to do things I considered as ‘grown up’, like visit restaurants. Mum, Dad and I would go for a curry every so often and I really enjoyed that time. I would sit and drink two pints of mango lasse and we would have grown-up conversations. They would question me about things like school, and there would be no distractions apart from the food, and food, as you know, is one of my favourite things.
James: When you say ‘grown up conversations’ what does that mean?
Lizzie: I guess, more normal conversations: how my week had been, what programmes I had been watching or just talking without any distractions, that’s what felt most grown up to me. It was relaxing getting to talk without you crawling under the table and biting people ankles and I think others liked that too.
I also liked to go shopping to buy CDs. I really enjoyed taking them home and listening to them. It was just normal stuff.
James: And what about school?
Lizzie: At secondary school, I used to spend every lunchtime with the teachers (like a complete dork) doing music or extra cross country or extra… anything. So, I think the answer to ‘what I was doing when I wasn’t with you’, was that I did every single club… ever… in the whole world:
- Basketball
- Netball
- Tennis
- Swimming
- Circus skills
- Tap dancing
- Ballet dancing
- Jazz dancing
- Football
- Hockey
- Drama
- Drama again
- Skating
- Singing
- Clarinet
- Recorder
- Keyboard
- What else?
James: Guitar?
Lizzie: Guitar! I did so much extracurricular – it’s ridiculous. I never had a free lunchtime. Mum asked me about this recently, she said ‘Why do you think that you have to be busy all the time?’, but I think I’ve always been like that.
James: So, I’ve got two ideas that might explain this, so let me know which you think is closest or if they’re both wrong. Is it:
A. You didn’t know what relaxed was because of how our homelife had been?
Or B. You finally had the chance to do anything, so you did everything?
Lizzie: I don’t know. There probably is a reasonable link, but it might just be that I was always thinking about the next thing, trying to predict the future and looking for any signs of change. My mind is, and was, very busy, so it trained my body to keep busy too.
It winds up Ollie [Lizzie’s Boyfriend]. He tells me I have to stop or my brain will spill out – but I can’t stop. It’s now really unnatural for me to do so. It could be that I had got used to being hyper-alert about things going on around me for you, but I don’t know.
James: What about friends then? What did you do with friends and did I impact on your friendships?
Lizzie: I used to spend a lot of time at their houses doing lots of normal stuff: making up dance routines, recording ourselves on the karaoke, making tree houses.
Obviously, you impacted on how and when I could have friends round to the house. Firstly, because Mum and Dad were really embarrassing haha, but also because I didn’t know how you would be, or how whoever I was hanging around with would find you – and that could be scary or awkward.
One time my friend Ella came around and I don’t know how it happened, but you ended up weeing on her. When I found her, she was laughing but I could see nothing but pain in her eyes. She definitely wasn’t impressed, but she did come back, so who knows?
It made me feel nervous having people around after that and it probably wasn’t healthy for you. You didn’t know what to do when you met new people. I think when I introduced you to Fiona for the first time, you got naked, pointed a broom at her and sang ‘Girl, I want to take you to a gay bar’.
I found it very funny and I have some great stories out of it, but it did mean that I preferred to go to their houses, which was fine and gave me a good break. Although, I did have a really cool bedroom that I wanted to show off to people and sometimes I couldn’t do that.
James: It was a cool bedroom! You had a disco ball and a doorbell
Lizzie: And pink walls and a lilac carpet, a queen-sized bed and a karaoke machine, which, if you think about mum and how she would have thought about having hot pink walls in a room in her house, it must have felt like a constant sacrifice for her haha.
It was all geared up for friends to come around, but I couldn’t, so it was just solo karaoke for me… until you would tell me to shut up.
James: Do you thinking having your own sanctum was good for you then?
Lizzie: Oh yeah, it was very good for me to have a space that I had complete control over. I was allowed to decorate it however I wanted, and you very rarely came in unless you wanted to play Pokémon, or something wasn’t making sense and you needed me to explain it to you. I was very lucky to have that much space though, because I know a lot of people don’t or can’t.
James: I also had my space like you had yours. Do you think that helped, that you had a space which you knew to avoid?
Lizzie: I had no choice but to avoid you when you were in there and I don’t think I would have wanted to be in there if you let me. It was very strange place and you use to put booby traps all around there like cushions on the door that would land on my head if I came in. It was only matter of time until it became something heavier like a paint can… or an anvil.
James: So, when you saw your friends with their siblings what did you think of that relationship?
Lizzie: I’m not sure, because no two were really the same. I had friends who would like to fight like hell with each other and I would think, ‘My God, I would never take James on the way you do with each other’. I also had friends who had siblings that were much older, and they were the baby and then I would think, ‘that’s so weird’. I don’t think I ever felt jealous of other siblings though – I more envied their homes especially when I would walk in somewhere and it would be so quiet.
Let’s be honest though, I did always want a sister and, if anything, I wish you could have been that – but at least you let me dress you up as one, so I can’t complain.
James: So other than putting me in a dress, what activities did you enjoy us doing together?
Lizzie: I liked dressing up, so if I could have you as an accessory that was great. I would be a witch and you could be a black cat.
I also liked playing Pokémon with you and watching TV shows together: Sabrina, Saved by the Bell, Kenan and Kel. anything Nickelodeon.
Holidays were good as well. We would find little groups of friends and hang out.
James: Holidays were perfect for making friends as well because we would meet someone and they would be like ‘oh he’s quirky and she’s loveable’ and then just as it’s time to leave and never see each other again, they would realise that I’m actually a pain in the backside and you’re clumsy to the point of catastrophe’.
Lizzie: Yeah or you would throw someone in the pool with all their clothes and suitcases and they wouldn’t be able to swim. Yeah, we had good times …I think.
James: So apart from having your own little room, what other support did you receive?
Lizzie So, when we were at the same school together, I used to have time with a teaching assistant. She used to just talk to me about how I was feeling, and she got me to write the diary where I analysed your behaviour. Thinking about that now I must have thought I was so much better than you. It felt like power: monitoring you and tracking what you had done.
Recently I remembered that I use to also sleep with a bunch of weird woven dolls underneath my pillow and I was told to talk to them and tell them all my worries to make them go away. They were actually really useful and I spoke to them every night.
James: That’s great that they were useful because it could have easily gone the other way and scarred you for life. They sound absolutely horrifying!
Lizzie: It was quite creepy actually, and they weren’t little children either they were dolls of adults, but I had loads of them and I found them to be a big release for me each day.
As I got older I went CAMHS (Child and Adolescent Mental Health Service) and I had a mental health worker. She was called Jenny and I got to see her as many times as I wanted to, whether it be every 2 weeks or every month or every 3 months.
Then I got to 16 and it all ended very abruptly. I found that quite difficult.
James: Do you know why that ended?
Lizzie: I was too old. When you get to 16, it’s just not a provision anymore. I might have been warned, but I really felt like I wasn’t. I had no idea who I was supposed to speak to confidentially after that. She was my outlet. I could go there and just talk or maybe not say much at all, but it lifted a weight for me, and it was really useful.
I’m not even sure if services like that are still available anymore. I always felt like I didn’t need to be there, that I didn’t have enough reason to be there and that I was lucky to have the option, but looking back there were periods of time where I was really struggling and needed it. This started when I was 9.
I also went to Young Carers for a while and that was good. Lots of different types of people with different situations were there and it opened my eyes up to a bigger picture, because I could become quite focused on our situation and you. Being around other people and listening to their story gave me more perspective.
I went to that for a short time but don’t think I went to it enough. They gave us lots of different techniques to use to keep ourselves in check and look after ourselves, but it was also good to just talk to people in similar situations. Some of the children there really had it rough, they were looking after parents with addiction fulltime or they had siblings with complex needs, some of who were terminally ill and, although I couldn’t relate on that level, it was good to talk to other people who felt that it was their job to keep others okay at such a young age.
I was given a lot of access to a lot of services and I don’t know whether that was through Mum’s constant research and her pushing for things or whether it was from teachers and doctors who felt it was needed. I hope all of these options are still around today though. They are necessary.
James: This is a bit of a tough one, but I wanted to know what went through your head when I was coming at you during a meltdown?
Lizzie: I knew that I had to just run and get away, otherwise you would really hurt me and then you would get more upset because you would feel guilty that you had hurt me. I would make as much noise as possible so Mum or Dad could hear.
I knew that I couldn’t stop you when you were like that. It was scary, frustrating, and upsetting all at the same time.
James: Why frustrating?
Lizzie: Because I was just trying to get on with my day and I wouldn’t do anything wrong. I would try to do things in a considerate way for you, so it was frustrating that, when it happened, I never felt like I deserved it.
James: Were you ever taught how to deal with it?
Lizzie: I wasn’t taught how to physically deal with it, but I was told to stay out of your way, if you looked like you were going to blow. I learnt to predict your reactions and would do things that would make you less likely to explode, like I to learnt to hum a bit quieter or not play piano when you were watching Sponge Bob Square Pants.
James: That’s so sad! Although, in my defence, why did Mum decide to bring that Grand Piano into my room?
Lizzie: I know, I know, but where else was it supposed to go? We all knew it was a mistake …and it wasn’t a grand piano!
James: It was! It was like a church organ ringing in my ears when I was watching cartoons – I think Mum did that on purpose like a kind of autistic game of Buckaroo.
James: So finally, you’ve spoken about how you saw yourself in the future with me. You’ve spoken about how you saw yourself at the time – but how do you see yourself now, as the sibling of an autistic person 27 years on?
Lizzie: It’s still as interesting, but a lot easier.
We have a proper, proper friendship now and I don’t see myself as a full-time carer anymore, because that is Caz, your fiancée) You’re still the most important person in the world, but I don’t worry as much as I used to and that is a luxury.
I know with other people who have autistic siblings, it doesn’t always end up this way, but even if it hadn’t, I would still be grateful for all that we experienced together. I’m grateful for the life skills it has given me like patience, communication and problem solving. You are a grade A idiot but you’re my best friend and you make me laugh every moment that I’m with you. We have something very unique and we have lots of stories because of you being strange.
Carry on the Conversation:
I would like to take this moment to thank Lizzie for answering the questions today. I can’t imagine many of them were easy to speak about but I know that her answers should and will help many. In fact, if you have any questions which you would like to also ask. Please leave them in the comments section and I will aim to hassle Lizzie until she finds the time to give you a response.
As always, I can also be found on Twitter @AutismRevised, on Instagram @autisticandunapologetic and via my email: AutisticandUnapologetic@gmail.com.
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Thank you for reading and I will see you next time for more thoughts from across the spectrum.
