A few weeks ago (January 10th 2013) a blog post was written by Kate Hunter and published on Mamamia. The post was called, ‘When a boy with Autism came to stay”. The post speaks about a couple of days that Kate spent with the son of a long-time family friend who just so happens to be profoundly autistic.
Kate has received severe back lash in the comments about this post and also on Twitter, Facebook and other social media sites. I must admit I cringed a time or two whilst I was reading it and as I was sitting with D19 at the time (who as you may know has high functioning autism) he became very angry and frustrated at the way that Kate discussed the break and her families time that was spent with Aidan (the boy with autism).
I then went into recovery mode with D19 and had to explain to him that I think a great deal is lost in translation when it comes to the blogging world and trying to convey feelings and emotions over a computer screen.
I am passionate about getting people talking about autism. The more we can get people talking about it or asking questions the more we will as community increase autism awareness for your family and mine. Making the path ahead better for our children and other generations to come that may be touched by autism and other disabilities.
When I write my blog I am so cautious of the way I write things. I am fearful of wording the way I describe autism incorrectly and offending someone. I use to say my autistic son until it was pointed out to me that he was my son first and just so happened to have autism. So that then changed to my son living with autism. I must admit I do like that better but that is me. I don’t care how you describe your child or a child that you are speaking about that just happens to have autism (as long as it is not in a derogatory manner off course). As long as we as a community are discussing AUTISM is all that matters to me.
Do I think throughout this article Kate worded some things ‘politically incorrect’? Absolutely.
“They came up briefly last September, when I was amazed at how big Aidan was – he’s tall and heavy for his age. It had been easier to think of him as a little boy who might one day be ‘normal’. But here was a boy taller than me, and I couldn’t ask him how school’s going. Who he barracks for. I’m a chatty person, so that felt odd. Fine, but odd”.
Let’s face it this is not the best use of words to explain Aidan and I think anyone would admit that is the case. I also do not think it expresses how uncomfortable she was feeling in this foreign situation, but as you go through the article you can see that the majority of the article is just that, Kate, not knowing what to expect nor how to express what she was faced with.
Do I think there was any malice or intent to offend the entire autistic community? Absolutely not.
I think I get the right (as do any mother, father, carer of a child with autism) to have a say and defend Kate just as many have exercised that same right to criticise her. As a mother who has three children with autism, I am the first to admit that autism is a scary place to be. I know my children every minute of every day I know them or so I think and then they will do something unpredictable and sometimes a little scary and I think what the hell is that about. I find autism confronting, scary and downright confusing sometimes and I have three children with autism not to mention I am an advocate and founder of Mum Talks Autism. I am the one that people often turn to when they are trying to understand autism and some days I don’t understand it. I think it is harsh to say the least to look at this situation and the way that it has been conveyed and condemn Kate for just not knowing how to express herself 100% correctly.
My concern about all of this controversy is that people are just going to stop asking questions for fear of offending us as parents / carers. They don’t ask in case they word it wrong and start an argument and so that closes the lines of communication, it closes the ability for me to take an opportunity to inform someone about autism and lift the fear and stigma that sometimes hangs over the unknown. If we keep pouncing on people for the way they ask a question or make a comment, (when they are obviously coming from a good place) than people simply will stop asking. Let’s not allow that to happen.
So the next time someone asks you what is wrong with your child, or is your child normal, or any other way a stranger or even a friend or family member may word it I hope you remember this moment. Instead of responding in anger just stop and be thankful that they are asking because that then gives you the opportunity to raise autism awareness. To explain to someone that your child has autism and what that is like and then next time they see my T4 having a meltdown in the shop they might stop and recall your conversation and before passing judgement on me, they may smile and offer me support because you stopped and explained to them what autism is.
I want to finish this post with the final line of Kate’s article which I think sums it all up. My concern is that by the time people got to the end they may have not been able to see the beauty, empathy and kindness in this line. Kate writes:
“For hours they stood in the shallows – my husband, his mate and his mate’s boy. The men dissected the Sri Lanka test match while the boy studied the waves. All of them were happy.
It was a lovely couple of days”.
Let’s not lose all the possibilities of increasing autism awareness because genuine kindness gets lost in the translation and terminology.
I will leave the final word to my darling D19 who just walked back in with this written in his journal; with his permission I am sharing it with you.
Mum read me a blog tonight done by a woman with little to no experience with autism. She wrote about her encounter with a friend’s autistic 11 year old son and it offended me immensely because I read/listened to it being written with a disapproving point of view.
It annoyed me and I walked out of the room and went to my little brother. I kissed his fore head and hugged him even though he was sound asleep.
It annoys me to no end when people judge or see things and think they need to be dissected. This is contradictory as it is human nature to do it and I know this cause I do it more than anyone I know because of my autism. Well I know I do and so does B and T as I watch them doing it just like I use to when I was little like them. Autism is so hard to understand and I have autism, what hope is there for everyone else. I think the more autistic you are the more you dissect things. I mean come on now you don’t draw a picture of a city point by point like a photo just because of luck. People with autism can do these amazing things because their brain can dissect thing piece by piece. But still it is annoying to me that we all do it, we all dissect everything that everyone does and says even when it doesn’t need to be dissected. Autism or no autism.
Some things should just be left alone. Because here’s the thing I looked at the last line of this lady’s blog. Just the last part and there is no judgment, no point of view, just life, that’s it. Three men together at the beach watching the waves and talking about the cricket and a lady who knows nothing about autism saying what a lovely visit she had with her friend’s autistic son. I won’t say more the ending is beautiful and it says it all.
Life is hard and things get lost in translation I think this is the case here as this lady has done the one thing I ask for from anyone; she has tried to understand my world, she has tried to understand autism and in a world where, as humans we must dissect things to survive and thrive, she has “tried.” She tried to look at the child in a positive light and at the end of the day that’ll make my irritation and anger turn into a smile. Not because it makes me happy, it doesn’t. But she tried and in an imperfect world all you can ask for is for people to try and that is enough for me.
-Through the mind of autism (aka D19 –Mum Talks Autism)
I felt the need to bring it up with you all and ask you to read the article and come back here and share with me your opinions and comments. One thing I need you to know is you can give your honest opinion of how the article and my post in response to it made you feel because I will be grateful that we are talking about autism and I won’t let that get lost in translation.
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