Recently, my brother turned 35 years old. He is 3 years older than me even though I have always been the ‘big sister’.

We have celebrated many birthdays together both at home and abroad (I live in the Netherlands) and whilst many of the occasions have been special, some were less than perfect. In this post, I want to reflect on what it means to be an ‘older’ younger sister and what I have learnt from celebrating birthdays with my brother.

From a young age, I was always trying to do things with my brother and to help him. I didn’t really understand his condition, for me it was a ‘normal’ part of life for many years (read here my poem about what autism meant to me, spoiler alert: it was normal to me). I therefore included him in many of my childhood hobbies and activities, for example: we would put on plays for my parents, I choreographed dance moves for us, we would bake together etc. I loved the company and although it was rather ‘different’, I believe that our time spent together as children really helped us to develop a long-lasting bond and friendship.

Growing up with him also taught me many, many things (that I will write about in a separate blog post) and I am immensely grateful for having had these experiences as they have shaped my character and made me the person I am today. It’s not all sweets and roses, however, as we had many difficult times as well that I know are prevalent in all sibling relationships, and we would also fight a lot when we were both frustrated as we were learning how to ‘live’ together.

Actually, one of our biggest ‘fights’ happened this year, funnily enough – on my birthday. He came together with our mother to visit me in the Netherlands for a few days so that we could celebrate together. It was his first trip away from home in a while and the night before, he didn’t get much sleep. Pretty much as soon as they walked through the door to my apartment, he completely lost it. He was in a highly anxious and aggressive state. He was shouting his echolalic phrases over and over again and was uncontrollable.

Normally, I have some coping mechanisms that I do with him (which I will talk about in another blog post), however, in this particular case, nothing worked. Not even a slight hint of calmness came to light. In fact, his outburst kept getting worse and worse to the point, where I completely lost it myself and was screaming, crying and shouting willing for it all to be over. It was a very painful experience because the whole trip (and celebrations) were meant to be something special, and we have limited times in the year when we see each other, so I always want it to be a nice time. However, with autism – nothing is ever predictable. I know that for him, having had little sleep and the over-excitement and nervousness of travelling abroad can affect his temperament, however it was one of his worst outbursts yet and I just wasn’t at all capable or willing to accept it.

The following day, we had a city trip in Delft with a friend and I was so angry and upset about the day before, I couldn’t even look at my brother all day. He obviously apologized and was a lot better but I just couldn’t let it go. I thought it was all quite unforgiveable, so I was in a grouchy mood all day. However, interestingly enough – my friend who was with us said quite out of the blue: “Your brother is so full of love, it’s remarkable to see”.

The following day (2 days after the incident), we went swimming (I was still not talking to my brother). However, as we got a floating noodle and I took him floating around the pool (begrudgingly), that’s when I had a very interesting moment. As we were floating, I looked at him and his eyes were looking at the ceiling, a small smile on his face and there, I saw it… my friend was completely right. He looked so full of love that my heart just melted. That moment of looking – really looking at him, just melted away all the anger I had.

Because, no matter what happens – I think it is very true what they say about autistic people being ‘angels of light’. They are very empathic and intuitive people and have a lot of love in their hearts. They just have an incredibly tough time and sometimes, their behaviour can be uncontrollable and debilitating. Yet, isn’t it the same for us? We also have moments where we completely lose control, whether out of anger, sadness, despair – whatever it may be. There’s definitely been a few moments I am not proud of and feel bad for having behaved a certain way – this happens to us all. We can all lose control and yet, we are not even close to the level of over-stimulation and difficulties an autistic individual experiences.

I, therefore, wanted to write this piece as a reminder that no matter how hard it can be sometimes, it is important to remember that there is always love there. With love, compassion, understanding and forgiveness, even the most fraught of sibling relationships can be mended. It can be very difficult in the moment, and for me – it took several days to calm down from what had happened, however, the remark from my friend had really touched something in me and I was able to accept the situation and of course, to forgive my brother (and myself). 

 A few months later, I went to visit him and the rest of my family for his birthday and we had a really lovely time together, even though it was raining all week. We had nice moments together and also some difficult ones but that is, after all, the reality of having an autistic sibling. Birthdays, celebrations, special occasions etc., – they are all important events, and though sometimes they might not look how you would like them to with your autistic sibling, it’s important to remember that we are all in this together and we’re all just trying our best, meltdowns and all.