Autism: To Have or To Be

 

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Here in Australia April is the middle month of Autumn. The weather is cooling down and the deciduous leaves are starting to change colour. April is also home to World Autism Day, Autism Awareness Week and Autism Awareness Month. It might seem a little funny to have one day or one week or a whole month to be “aware” of autism. For people with autism and their families, autism is an ongoing reality for the other 364 days, 51 weeks or 11 months of the year. We are just not “aware” of autism, we live and breathe it. Of course, it is good to increase awareness about autism, but what people with autism need more than just awareness is understanding – understanding that autism is not a condition to be cured but a way of being. 

Words can Build you Up and Words can Tear you Down

 We all know that words matter. Kind words can build somebody up and cruel words can tear someone down. In these days of political correctness, it can be confusing to know which words to use. Should we say “a person with autism” or “an autistic person”? There are strong feelings on both sides of this argument. Some people might insist that we should take a person-centred approach and say “a person with autism.” There is merit in this view. It puts the focus on the person and not on whatever condition or disability the person may or may not have. It is respectful, polite, positive.  

On the other hand, some people with autism are now proudly claiming the word autistic as a central part of their identity. They see their autism as a way of being, as core to who they are as a person. Their autism doesn’t just suddenly appear in certain situations or in the presence of others. It’s always there – every second of the day. They think, process, communicate, act and live autistically. For them, there is no other authentic way of being. 

I use both ways of speaking about Dan. Sometimes I say Dan has autism. Other times I say Dan is autistic. In the early days, I probably tended to lean towards using “a person with autism.” But the more I have learnt about autism and the more I have come to understand the way Dan ticks, the more I see autism as being central to who Dan is. 

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Dan’s autism is not an additional extra. It’s not like a layer of icing on a cake. You can’t lick it off and just have the cake. I cannot separate Dan from his autism and nor would I want to. He isn’t a young man who just happens to have autism, but one for whom autism is as natural as the blood flowing through his veins.  It has always been there. It will always be there.

Dan perceives the world in a uniquely autistic way. He relates to and communicates with others in a uniquely autistic way. He processes information and responds to stimuli, people and events in a uniquely autistic way. There is no other way for Dan to be. It’s different. Even entertaining at times. Sometimes it’s mind-boggling. It’s autistic. 

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Sometimes we forget that Dan is autistic. I know that sounds a little strange given how much autism is a part of our lives. But Dan’s way of being is so naturally “Dan”, we know no other way. Perhaps the truth is that in accepting Dan for who he is, for learning his language and accommodating his way of being, we are no longer a family with autism but an autistic family.   

I think the choice of terminology comes down to personal preference. I personally don’t mind whether people call Dan a person with autism or an autistic person, as long as they recognise and accept the essentially autistic nature of his being. Perhaps one day Dan will be able to tell us which one he prefers. 

Words do matter but the right for people on the spectrum to choose the words to describe themselves as a person also matters. The least we can do is respect their choice. Having or being – it’s still autism.

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