As a sister to an autistic brother, I experienced quite a different family life to that of my friends and peers.

My brother is 3 years older than me, yet I always felt like I was the ‘big sister’. And of course, in many ways I was. Some years were quite difficult for both of us (in particular, teenagerhood). However, in general, we made it work and we developed a deep bond and connection. We are now both in our early 30s and though we no longer live together (I moved away for work), we still see each other several times a year and try to holiday together, too.

Of course, all families are different and have their own ways of dealing with things. However, I wanted to write this guide for people like me who are curious about others’ experiences and who want to get inspiration for their own story.

In this guide, I write about some important insights I have gained as well as my experiences. Although I currently don’t live together with my brother, I did so for the best part of 20 years, so I will also share some tips for those who do live together with their autistic sibling. For those who don’t live with their brother/sister, I will also share some tips and stories about how we managed to keep a close bond even when apart.

This will be part of a new series called Sister’s Stories where I will share my stories and experiences living with my autistic brother.

So let’s begin!

Living together

When you live together, it can be particularly difficult, especially if you are also old enough to want your own independence.

Here are some tips and insights from my own experience:

Tension

Whilst living with your autistic brother and sister, you probably have gotten to know the basics of:

 – keeping up a routine

– being aware of their needs (emotional/physical)

– knowing how to communicate with them

(if not, then I suggest to start there).

You also know that you can have good days and bad days (and they too) and so it is important to navigate this time as best as possible.

I have to admit, I have lost my temper a number of times when my brother was also struggling because I was either annoyed or fed up or had my own stuff to deal with. Just remember that lashing out might feel like something you need to do in that moment, but a) it doesn’t achieve anything and b) it doesn’t actually help. It’s not like my brother stopped shouting when I shouted at him to stop..

So, in these situations, I would advise for each to take space and rest away from one another.

After some time, if you come back to your sibling, you will also notice how much pain and hurt they are carrying and you can try and talk about it together. Usually I ask my brother, “What happened? What were you feeling?” He doesn’t really give conclusive answers nor can he fully verbalise his thoughts and emotions, however just having that quiet talk (in a way that I understand) helps us relieve the tension and move on.

Independence

Firstly, it is more than ok to want your own independence and time alone. I sometimes felt guilty if I was going out with my friends, knowing my brother couldn’t do this and I was using my time otherwise instead of spending it together with him. This meant that often, I couldn’t fully relax or enjoy myself knowing my family was at home.

Sometimes, the opposite was true and I wanted to get away as fast as possible and to not think about my family.

Both feelings are completely valid and normal. It is often like a see-saw and you never know which way it will go. What I would advise is the following:

–       Set some time aside during the week where you will do activities together with your sibling, even if it’s as small as going to the shop to get a newspaper. Really, no matter how small, these experiences are still meaningful and it’s important when it comes to building your relationship with your sibling.

–       Have set times/days during the week where you actively help your family out (if you want to, of course). Whether that’s preparing a meal, going shopping, going for walks with your sibling, whatever it is that can help your family, make sure to contribute. This tip I would suggest regardless if you had an autistic sibling or not to help maintain a harmonious family life, but especially with an autistic brother/sister it’s nice to offer some support to your family.

–       When you have your own free time, enjoy it and let go of any feelings of guilt. We can always do more (and we will always have this feeling – apparently many parents have this) however, it’s really not helpful. You should make time for yourself, explore your own interests and hobbies and become your own person. If we give too much, after some time, we don’t even know who we are anymore or what it is that makes us happy so make sure to nurture this time with yourself – it’s important too.

–       If it helps, you can also talk about how you feel to close friends. It’s something I never did for the fear of them not understanding but actually, people will understand more than you think for we are all facing struggles. If that’s not an option, I do think releasing tension is important and therefore I would sometimes go into nature and let it out there. Either talking, shouting, crying – whatever it may be. It helps to release emotion from your body and this will help you so much both short and long-term.

Navigating family life

I feel I could write a whole book about this, but I will keep it short & sweet. Family life is very different when you have a disabled sibling and it really can push all of you to the limits. We have had so many shouting matches and doors slammed and cats scared out of their bed, I couldn’t even begin to count. However, we have also had many amazing moments over a dinner table, on holiday together or even in the living room watching television. Which family hasn’t?

The only thing to say is: be kind to one another. Everyone’s doing their best and everyone is wanting the best for each other. Understanding and empathy will go far. If others in your family are being very difficult, just realise that it’s due to their own internal suffering so don’t take things personally, let it go and offer compassion towards those members.

Moving away

Usually, when you haven’t seen your friends and family for a long time, you want to make it extra special when you do meet. Not only are we on our best behaviour (at least for the first while) but we are also excited to share stories and catch up with one another.

How does this look like for a sibling with an autistic brother or sister?

Well, firstly, ‘best behaviour’ is not anything that can be expected, for it is never consistent. Sometimes I come home after months of being away and although my brother is always happy to see me, if he is having a bad or difficult day, he will not be able to switch that off.

That is why it is useful to understand autism and autistic people in general, because our expectations can sometimes interfere and we may end up disappointed.

Takeaway: Don’t take it personally. If your sibling really isn’t having a good day, no matter how excited you are to see him/her, just know it’s not about you. They are usually also happy but their focus might be on something entirely different such as coping mechanism due to an earlier situation for example.

Find an activity you both love

I personally love going out with my brother, mainly because we have one thing in common: we are both active and love the outdoors. Therefore, if we go walking in nature, I know I have to really get my stamina up because he almost sprints through the hills and the mountains and it’s such a workout for me to keep up.

During these walks, we don’t really talk. We enjoy each other’s company in the best way possible and that’s being together and building a memory and creating an experience. It’s a good realization too that there are other ways to bond and feel closer other than talking.

 

 

He also loves swimming and although I am not the biggest fan, it’s still an activity that we can both enjoy together.

I also love to cook and especially when I am at home and don’t need to work, I will make some quite elaborate meals – after all, having my family as guinea pigs to taste-test my cooking definitely proves useful (they are quite picky eaters). So I switch on some music and together with my brother, I go through the recipe, reading out-loud and preparing him for all the steps. I make sure he is as involved as he can be, whether that’s grating carrots, mixing something in a bowl, drying up the dishes or whatever it is he can do, he is always involved and it’s always a fun process.

These moments of time spent together doing something is really precious and makes both of us feel happy.

Takeaway: find an activity you both enjoy, whether it’s something physical like dancing, walking, swimming or cooking, painting, music. Make them participate in any way that they can. If you don’t know what they like, then involve them in some activities that you like and see if there is one that’s a good fit for both of you. Remember, our siblings want to be with us and when they see we are also trying, they will also try their best to be involved.

Meeting other people

This has changed in the years I have grown. When I was younger – a teenager going into my early 20s, I felt quite sensitive when it came to letting people meet my brother. It seemed a much bigger deal to me then and I felt I needed to prepare the people about what he was like. I was usually quite nervous and didn’t really know what to do.

Fast-forward some years later, you want to know my trick? I always tell in advance to the person that my brother has autism…and that’s about it. The rest, I just let play out however it does. For me, having grown up with my brother for over 30 years, it really has become normal. In fact, it has always been normal to me as I don’t know any different. Therefore, I could make special attention and fuss about it, but really, it doesn’t bring anything and just makes everyone rather on edge.

Now, I always enjoy seeing how people interact in their own ways with my brother. He is his own individual and I think it’s important for him to feel that too when it comes to meeting new people. It also helps of course that these days, more people are aware about autism so you don’t have to explain everything anymore.

Learning about autism

I am quite lucky in the fact that my mum is an autism specialist and therefore our house was always filled with books about autism and, of course, seeing how she parented my brother was very helpful for me to understand more about autism.

I have always had an interest in it and as a teenager, I would also do volunteering in the summer for a local group of children with various mental and physical disabilities.

For me, understanding more about autism has been tremendously helpful in understanding my brother and building our relationship. As a sibling, you already know a lot intuitively, for example ‘oh, my brother would LOVE it here”, or “my sister really wouldn’t like this”, however, also knowing about their sensory problems, for example, and how it affects them and their behaviours is incredibly useful.

For example, did you know that they [autistics] cannot filter incoming information like we can? That is why they are very easily overloaded and can display challenging behaviours as they struggle to cope.

This can be explained by modern neurological research where comparative studies have been done with autistic and non-autistic individuals. Research found that in autistic individuals, transmitted sensory information was not contained in small units in the brain (called ‘minicolumns’*), but instead ‘overflowed’ to nearby units, creating an amplifier effect.[i]

Professor Manuel Casanova compares these inhibitory fibres with a shower curtain. When working properly and fully protecting the bathtub, the shower curtain prevents water from spilling to the floor. In autism, ‘water is all over the bathroom’.

Sensory stimuli can be experienced very differently by autistic individuals. Just because we may not feel something, it does not mean that they don’t.

From the book: Becoming a Professional Parent.

Just understanding this will help when your sibling is having a meltdown and you, yourself, are at the end of your tether. If you just take a pause and breathe and remember that at that moment they are so overloaded, then it would already help not to get too caught up with them in the negative situation and emotions.

Routines and rituals

As you may know, routines and rituals are incredibly important to autistic people and it is important that we, as siblings, also help set them and adhere to them. Sure, you may not have the flexibility that you would normally have but it will work out so much better for you both to stick to these routines.

For example, when I visit home, we have an amazing bathtub and I always want to take a long bath, especially after travelling. However, if this falls on a day that my brother would usually take his bath, then it’s a no-go for me. Same goes for meal-times, daily activities and household chores. The routines are set and whether I like it or not, it is necessary to stick to them. When I was a teenager, this was sometimes, (ok, who am I kidding, often) difficult but now I really understand the importance of this and can put my wants aside.

Regarding rituals, it is also quite sweet now that we have our greeting (a kiss on the head) when we see each other or say goodbye.

Help them learn

Now, although rituals and routines are very important, I am also a big proponent when it comes to teaching my brother new skills as well as flexibility and adaptability. He feels safe with me and I know I can push his boundaries a little to open him up to more experiences. Learning is something we all do continuously through life and just because he is autistic, I don’t want him to be excluded from this (whether he likes it or not).

For example, when we are together, I have a very good intuitive feeling of how he is and what he can cope with. So I can ask him to do something he wouldn’t usually do and just be by his side. By the way, these are usually quite simple things, for example

–       Reading the menu and asking him to make an order (instead of doing it for him)

–       Exposing him to new food and drink (instead of his usual lemonade, I will ask him to order a smoothie and claim how delicious it is so he can also try it).

–       Speaking to people when we are out and about – I will encourage him to say something or to answer questions

–       Asking him to pay for things at the supermarket or in shops

Basically, simple activities that he doesn’t normally do, I get him to do with me. I always tell him it is important to be independent and to look after himself just like I need to do.

Takeaway? There are also other more complex activities, such as learning a musical instrument or a language that takes a lot of patience and perseverance but again, it’s great to be their coach and help them learn new skills.

Learn from them

Lastly, I would strongly encourage to learn from your brother or sister. Actually, you will learn many things without probably even realising.

Their desire for connection and harmony, their humility and their trying to navigate the world – just as we all are – is something quite beautiful and remarkable.

When I think of my brother, I think of quite a resilient, and strong-willed young man. He is open to trying new things and he loves to feel part of a whole (family, community) and connected to his environment and people around him. He still has a lot of difficult days and can be quite challenging however, I know he is dealing with a lot of anxiety and doesn’t know the right ways to express it or to deal with it. We need to be patient, understanding, supportive and just deal with it the best way we can. I feel happy when I know I can create lots of special memories with my brother and this to me is the most important thing.

[i] Casanova, M.F., Buxhoeveden, D.P., Brown, C. (2002) ‘Clinical and macroscopic correlates of minicolumnar pathology in autism.’ Journal of Child Neurology, 17(9), 692-695