My twin brother, his autism and me…

I’ve always wanted to write about my twin brother’s autism. It’s had a profound impact on me and my life as it does with anyone living with an autistic person.

As I have grown up I have started to better understand my brother’s autism but much of me is still eager to know what really goes on his world.

Writing this post has proved harder than I anticipated, thinking back to the feelings I’ve felt, putting it all into words and constantly writing sentences and then pressing backspace.

Whenever I tell people I am a twin they are often surprised, me and my brother do not look alike and we lead very different lifestyles.  They then ask funny questions. Let me just clarify,  no I cannot read my brother’s mind and no I do not feel pain when he does. If you’re a twin I’m sure you can relate to this!

My brother is non-verbal and so his autism is severe. He cannot do a lot of the things that I am doing and many of the things that I am yet to do. However, in my view listing all of the things that he can’t do/won’t do isn’t helpful. I think its important to remember that he has his own life and to appreciate what we do have.

We may not argue or fight but of course, like all siblings my brother annoys me and on purpose! Despite not being able to talk, he has a warm and friendly personality and I have always felt a special connection with him.

At times his autism was challenging and confusing. Everything seemed to revolve around him. He would do things that made no sense to us.  I watched people look at us, mock him and even frown at us when we pulled up in a disabled parking bay because my brother ‘doesn’t look disabled’. Yet, autism is a hidden disability, being disabled does not necessarily mean you have to be in a wheelchair.

I often found myself explaining things to others but I was always keen to tell them about it and at primary school I stood up and talked about my brother to my class. His autism opened my eyes and made me want to open others.

Sometimes it can be other people that make things difficult rather than the autism itself. Whilst this hurts, it’s clear that there is still a lack of understanding.   One time my parents visited me at uni and took us for a meal.   As the bar was noisy it upset my brother and he wanted to leave so kept moving around and standing up. A young woman then came over and said “I don’t know if he’s drunk or something” and I just stopped her there.  “He’s not drunk, he’s autistic” I said.

Over the last few years awareness has grown and this has certainly made things better. However,  people still do not know enough and I can’t say that even I fully understand autism, even the specialists are still learning.   But I can say that I am doing my best to learn more and do something to make things just that little bit better.

As my confidence grew at university I started to become more active in spreading awareness. For the first time I got involved in Autism Awareness month. I shared content on Facebook, attended a conference and went on the uni radio.  Being a student has especially helped me to reach a wide spread of people and educate my generation.  I never expected to receive the response that I did and this ultimately showed me that people do want to learn and I wanted to be a part of that.

My brother’s autism hasn’t stopped me from achieving my goals but what it has done is fuelled me with the urge to spread more awareness. I found leaving home for university really tough.  I worried about caring for my brother and wondered what my future would be like and whether I would even go to university.  But I did! Whilst I stayed closed to home I still had a uni experience and did everything that I wanted to do!

This summer I’m gaining work experience with a local organisation that has hugely supported my brother and provides services for children and adults with learning disabilities. I’m doing something I love, marketing,  whilst making an active contribution to the work that they do.  Recently I helped organise and run a wonderful talent show for some of their members and I can’t wait to see what else is in store.

As a family we have been incredibly lucky to have been surrounded by  great support services and good schools. We don’t live life saying that we can’t or shouldn’t. We live our lives appreciating what we have, going on holiday and out for dinner as families do.

He is my brother, who is special and I would not change him for the world.

 

Mon X

 

 

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