If you have a sibling with autism, then you probably have struggled making and maintaining a connection with them. They live in a very different world to you and to find the in-between can sometimes be difficult. Furthermore, depending on the severity of their autism there are many things you cannot do that you could with a ‘neuro-typical’ sibling. However, this doesn’t mean that there is no way to build a good relationship. It just means it will be different.

In this blog post, I’d like to share some tips that I have learned growing up with my autistic brother.

My brother has ‘classic’ autism, which means that he cannot properly communicate with others and cannot be on his own in terms of care. Although he is physically able to do many things: such as clothe himself, feed himself, bathe himself – he cannot do any of these ‘out of choice’ and only when told or asked to do so. Ok, maybe the feeding one he can do– he loves chocolate biscuits! In any case, we have a very special relationship and I am proud to say that we have managed to make it work. Below are some tips that I have learnt to help build and nurture this relationship.

Tip 1 – Communication: Speak to them on their level

In my case, this means several things: Firstly, I speak to him in ‘autistic friendly’ language, which means direct and to the point. If we are going to do something, I will tell him exactly what we will do and when, for example, “First, we will go to the shop, then the café and have lunch, then we will walk back home.”

Sometimes, he will get agitated if part of this plan doesn’t go through, for example, if the café is closed and we cannot go there for lunch. That’s when it’s important to speak calmly and explain, again in simple terms, such as: “The café is closed, therefore, we will look for something else now.” When he asks: “Why is it closed?” (as is the norm), I will reply with: “They are on holiday, however there will be something else open so let’s go and have a look.”

When it comes to having actual discussions, such as “How are you? What did you do today?” it can be very different. Usually, he will reply his known and used phrases such as ‘fine’, or ‘I don’t remember’ as it can be difficult for him in the moment to process my question and to know what to say.

That is when I ask more specifically: “What did you do this morning? What did you eat? Who did you speak to?” It is then easier for him to give me some answers. Although he never asks about me – which he cannot do – I still don’t let that be a barrier. Instead, when we are out together for lunch for example, I will tell him about my updates and what’s happening in my life.

It’s a very different way of communicating as you are both coming together from your own worlds into this middle one in order to communicate. It’s also simple and brief and you don’t necessarily need much more than that.

Tip 2 – Activities – Involve them in activities

For me, I really enjoy being active and outdoors and luckily so does my brother. One of our favourite (and simplest) activities is to go on long walks or hikes together. It is very relaxing for the both of us as well as gives us time to be together, without needing to talk necessarily.

I also enjoy cooking and therefore I ask him to help me in the kitchen. He will do what he can and I try and get him to read the recipe with me and follow along with the steps so that he can also be involved. In any case, he’s a great help for taking things to the dishwasher, for example, and throwing things away. (My brother loves everything to be clean and in the correct place).

Tip 3 – Consider their Sensory needs

Each autistic person has different sensory needs, which can greatly affect their day-to-day experience. For example, some cannot stand too much noise, for others, it’s light, then for some others, it can be crowds – in my brother’s case – all three.

This means that I am more aware of where we go and what we do as I know that some environments or situations can be more challenging for him. If we go out anywhere, I am always on ‘crowd-control’ alert and make sure that it’s not too bad or overbearing for him. If, however, it’s impossible to be somewhere quiet, then make sure you don’t add any extra stimulation to them. For example, if it’s very noisy somewhere and I see him ‘shutting off’, I don’t then start talking to him or asking him questions because I see that it’s already ‘too much’, so just be mindful of what your sibling’s sensory capacities are and adjust as much as possible.

Tip 4 – Don’t be afraid to step out of the comfort zone

With that said, I still do not encourage always keeping your sibling safe from all the noise and commotion – for, at the end of the day, this is not how we live. Having spent a lot of time with him, I am aware of his needs and boundaries; however, I also do not want this to stop him from experiencing other things. I always tried to be very protective in the past, however, this caused me a lot more stress and, furthermore, it wasn’t that great for him as he wasn’t exposed to different things.

Therefore, now I feel a lot more comfortable to take him to some crowded places (even briefly) such as music concerts. There is always a corner for him to dance at and I feel that he really enjoys these experiences as well. Recently, we also went to the cinema, which is of course too loud for most people, not just autistics but we saw a really nice animated film and he really enjoyed it. Though it’s not something we can do often, it is still a good experience to do occasionally.

Tip 5 – Have a calming protocol

My brother gets agitated quite easily and also on a daily basis. This means that sometimes it can be very frustrating to be around him as he can get aggressive (such as shouting or being very agitated) and it quickly gets very tiring. He has very high anxiety and he also does not know how to self-soothe (actually, I also didn’t know how to self-soothe until quite recently) so I do understand this.

This is where I am now teaching him some ways to, firstly, recognise that he is in a panicked state, as well as how to calm himself. (There will be a more detailed resource and a blog post about this soon).

The protocol that I have developed is, first and foremost, to stay calm yourself. Even if your sibling is screaming and shouting, any response from you that is also agitated will feed into the loop and it’s then harder and harder to get out of it. Therefore, I try and stay as calm as possible and start doing breathing exercises that I also encourage him to imitate and repeat after me. A round of 4-5 deep belly breaths really helps and can already calm the nervous system. Sometimes, the energy can be too much, which is when I encourage him to ‘shake it out’ – shake and move his body to get rid of the pent-up energy.

They basically need to get back into a state of homeostasis and feeling calm and safe again so working on dispelling the energy through breath and movement really helps.

It also helps to change the location, and go to a safe-space, for example, their bedroom or somewhere quiet outside. By changing location and calming the body will actively help calm the mind and it’s worth experimenting with what works for your sibling.

Note: I have recently started looking into tapping and Qi-Gong, which also works on re-distributing energy and want to try more of this with my brother. It helps me a lot with my anxiety!

Bonus Tip: Celebrate and encourage success

We all need to feel loved, appreciated and cared for and I think that we often don’t get or give enough praise. Therefore, if there’s something your autistic sibling has done well or you feel proud, tell them that! (It is also important to try and do this with a ‘neutral emotion’ in your voice for it can be overwhelming when we change our voice and can distort any message we want to say). You may not get a response, and that’s fine. It’s very important to still do this so that they also can feel ‘accomplished’ in their own way, and when we get lost in our day-to-day lives, this one small change can make all the difference.

If any of you have an autistic sibling, I’d love to hear about any tips that have worked for you. How is your relationship and what has been helpful in navigating it? Feel free to comment below!