My brother is autistic, but he is not missing a piece of himself

8 mins read

(Disclaimer: this is not an attempt to lecture on the topic of autism. I am in no way qualified to speak of the aspects of being autistic, I can only tell what I have experienced living with someone who is autistic.)

If I am being perfectly honest I never paid much attention to people with autism. Thinking about it, I realise that I have for the most parts of my years in school always been in the company of someone on the spectrum. Nevertheless, the topic of conversation was never on their diagnosis, rather on how they were odd in their behaviour, how they needed extra help in the classroom, how we didn’t include them in our games. I am not proud of that.

We were children and we didn’t know better, in fact, we didn’t know at all. It was hush-hush and not a part of the school curriculum or something that had to be explained to the classroom.

Thinking about it, I regret not knowing what autism was. However, today on April 2nd, there is an extraordinary chance to spread awareness of autism, and on that occasion, I want to share a story.

Private photo of Asger, age 8

I am the eldest in a flock of five children. The relationship I have with all of my younger siblings are very loving, but one is a bit different (you might now notice where this is headed). There is a five year age gap between myself and one of my brothers. He was born three days after my birthday, so we have for the last 15 years celebrated every birthday together, him and I. He was my late birthday present.

His name is Asger. He likes video games, spaghetti carbonara, geodes, pre-historic creatures and deep-sea monsters – oh, and white chocolate is his favourite.

By the time 2019 was coming to an end, he received his diagnosis. The process had been long and tedious, taken almost a whole year. Getting the school to start a conversation on Asger’s social and academic skills was the most difficult part. They simply didn’t have the resources.

It can be quite difficult to pick up on signs of autism and habits that are unrelated to autism in children and adolescents, especially if you don’t know what to look out for. Every person is different and so is every diagnosis. The different autism diagnoses are laid out on a spectrum and symptoms vary in severity and intensity.

The process affected the whole family. We were still in the aftermath of a divorce and had moved house 6 months prior, still settling in. The confusion and frustration of seemingly getting nowhere had its epicentre in my mum and brother, but their emotions could be felt throughout the house’s four walls.

Mum decided to take matters into her own hands, going directly to the municipality. Finally, the ball started rolling and Asger received his diagnosis. He has Asperger’s Syndrome, or simply Asperger’s, on the autism spectrum. As a parent, my mother says she’s always known as only a mother knows. I think we all knew, but our speculations had previously been, well, merely speculations.

Private photo of Asger, age 11

In his pre-teen and early adolescent years, our relationship has grown into a bond, which, with more than 500 miles between us, creates a smile on my face.

I would push his boundaries to the extent that I knew he could take it, making him try smaller rollercoasters at theme parks, building up his confidence and trust that nothing bad was going to happen.

I would walk him home from school when he was still too young to take the walk alone and drive him to and pick him up from scouts every Thursday, asking what fun activities they had done. The answers may have been short, but letting him know that I was interested in him prompted me to ask every time.

I would ask him to help me cook dinner, talk him through how to buy a ticket at the train station alone, play board games with him, help him with his French homework, teach him to ski.
And he would shake his head silly at me when I came up with stupid ideas, such as carrying a tree stem, much too large, through the forest to use as house décor.

I can tell, as only a sister can, that he trusts me, will take my advice and listen to what I say. I am not a parental figure or a helper, but rather a companion and friend – a sibling.

Private photo of Asger riding a horse for the first time, age 14

He still struggles, as any person on the spectrum does. Yet, receiving his diagnosis was a blessing in disguise. There are no ways around it, but by being diagnosed with Asperger’s he has been given a piece of information about himself that will help him understand why he is like he is. It lifted off a weight from all of us, and I, personally, found out that while I had never known or thought of my classmates as autistic, I had shared my everyday life with an autistic person since the age of 5.

It saddens me that some people will view Asger as a person with a disease. Autism is neither bad nor a disease you can get. You are either autistic from birth (symptoms may not occur until later in the child’s development) or you are not, simple as that.

In the process of writing this piece, I’ve spoken to both Asger and mum about our journey with his diagnosis process and experiences on raising and living with someone on the spectrum.

With the focus on autism awareness today I took the liberty to ask him if he had any advice on how to approach someone with autism. Although communication is one of the things that he struggles with a lot (a very common symptom of autism) he did give me an answer. He sounded very sure when he said “Think about what you are saying.”

I am filled with pride every time I am updated on his life and we reminisce on his uniqueness, how Asperger’s is a part of him and always has been.


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