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Living With Autism

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AUTISM
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I don't remember the day I found out my brother was autistic. That's the thing with autism, it reveals itself over many years and there is no single defining moment when you understand what it means. There are two moments, however, that stick in my mind when I think back to when I began to understand autism and my brother.

The first is a story from a family holiday in the summer of 2002. My brother, Dylan, was three years old and we had decided to go to Hawaii for a summer break. Sitting on Wakiki beach, my parents and I took in the splendour of the beach paradise that is Hawaii. Dylan, on the other hand, was less concerned with the scenery and more taken by sand. Most children build sandcastles, bury siblings or dig holes but Dylan sat for the whole week and consistently shoveled handfuls of sand into his mouth. With each handful Dylan put in his mouth he let out a cry of confusion and disgust.

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I was 15 and when I wasn't splashing around in the waves I would stare at Dylan wondering why on earth he kept attempting to eat sand. I couldn't understand why my little brother would keep doing something that he clearly didn't enjoy. I began to see that Dylan isn't able to control his urges, even when it is something that clearly upsets him.

The second story comes several years later. Dylan was around seven years old and I was sat in the living room of our family home with him and my mum. Although we were becoming aware of the severity of Dylan's autism by this point, he had never spoken a word, we were still obsessed with coming up with intuitive ways of encouraging Dylan to speak. This time we were sat with a pack of raisons, Dylan's favourite snack, and trying to encourage him to say 'mine' before giving them to him. Dylan never said 'mine' but we convinced ourselves that he had said it. I held onto that moment for such a longtime convinced that one-day Dylan would be able to speak. Looking back, I understand the painful hope that autism brings; no one could tell us the boundaries of Dylan's learning difficulties so we were left to hope for things that would never happen.

Dylan is now 14. My brother is non-verbal and suffers from severe learning difficulties. He requires 24-7 care, which my parents split between them. Recently, I have moved back home and been reminded of how difficult it is living with a child that is severely autistic. Dylan is hard work: he never sits down, requires care to use the toilet and is regularly awake through the night. Now there is the added problem of puberty and the issues that adolescence raise. Throughout all of this my parents care for Dylan completely, even feeling depressed and empty when the other is looking after him during a rest period.

That's the thing. When we are confronted by Dylan's smiling and beautiful face it is impossible not to have your heart melt. Dylan may be tiring, he may require constant care and he may not be able to communicate his needs but he has incredible power to make you love him. Whether it is coming downstairs to find him smearing butter over the kitchen or finding him fully clothed in the bath, one smile from Dylan and you can't help but smile back.

I used to have a recurrent dream in which Dylan would speak to me and tell me he loved me. I used to wake up sad, sometimes in tears, desperate to hear his voice speak to me. I don't have that dream anymore. Over the course of his short life Dylan has become adept in showing pure, unadulterated love. He may not be able to say the words, but when he hugs me or kisses me (a kiss meaning a lick for Dylan) I know he loves me.

I sit and look at Dylan playing in the garden sometimes. I watch him bouncing on his trampoline and I see inspiration. I'm 26 now and work in peace building and human rights. Dylan is the reason I am trying to contribute something positive to the world. When I look at him I see no prejudices, no hate and an inability to hold a grudge. All I see is my beautiful, innocent brother who loves all around him. Dylan made me understand that all that divides us is surmountable.

We are lucky as a family living with autism. Dylan has never shown aggression to anyone. Many other families do not have the same experience. It hasn't been easy at all however; autism brings incredible stress on a family that often leads to irreparable fractures. We are no different. My parents separated six years ago, which, although sad, allowed for them to share caring responsibilities and have a rest from time to time. Things are still difficult, not for me, but for them as the future of an autistic child is never clear. Dylan is getting stronger and taller all the time, which is becoming ever more challenging for both my parents to deal with. While we cannot predict Dylan's future, he will always have our love and our time.

Sometimes people ask me if I would change Dylan if I could. The answer is of course I would. If I could give Dylan the independence he will never have, provide him with the skills to communicate when he is feeling sick or allow him to make himself some food then I would do it in a flash. Desiring this doesn't lessen my love for him, it just means that I would want Dylan to be able to do the things many of us take for granted.

April is 'Autism Awareness Month'. It is a chance for families to tell their stories and improve understanding of autism. When Dylan was a toddler I remember having to explain autism to almost everyone I met. Now, when I say I have an autistic brother I rarely have to explain what it is. No doubt this increased awareness is down to the good work being done by autism societies across the world. Perhaps social media is also a factor: my dad tells the story of living with Dylan on Twitter along with many, many other parents of children with autism.

The Autism Society says that autism prevalence is now one in every 88 children in America. It is important that we learn more about autism because it affects so many families. We who live with autism must speak more about its challenges and society must listen. Caring for a child with autism is stressful and parents often have little respite. More must be done to support those living with autism and it is only through increased understanding that people will begin to listen. This month, seek out the Autism Awareness Puzzle Ribbon and listen to the endless compelling tales of those living with autism. We who live with autism are ready to share our stories with you.

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