By KATE HUNTER.
I admit I was apprehensive.
Jim’s mate Shaun was coming to stay with us at the beach, and he was bringing his kids, Ella and Aidan.
Ella is nearly nine and as delightful as only a nearly-nine-year-old girl can be.
Aidan is eleven and a half, and he’s profoundly, heartbreakingly autistic.
He’s at the severe end of the spectrum. Never spoken a word, never laughed at a joke, pulled on his own jeans. He flaps his hands in front of his face, makes sing-song sounds and follows his parents about. Sometimes he uses the toilet, sometimes not. When he’s out and about, his parents put a nappy on him.
Years ago, we lived close to Aidan’s family in Sydney. Our sons were born three months apart. There were foolish jokes about our boys playing for the Wallabies, the silly things thing new parents say. Turns out neither boy will bother the Australian selectors.
We moved home to Brisbane when the boys were two; about the time it was becoming clear there was something wrong with Aidan. Our toddler was chattering away to us, Aidan wasn’t. He seemed to be going backwards. The diagnosis from the specialist was swift and brutal. There could be no prediction about how he would develop. Would he talk? Make friends? Go to Shaun’s old school? No one could say. Any guess would be just that, a guess. No medical or educational professional would ever know as much about Aidan as his parents – there’s no how-to guide for autism.
Shaun told us he had to ‘readjust his dreams’ for their boy. Not a Wallaby, but maybe some words? So far, no.
Shaun and Jim still call each other every week or two, to see how stuff is. They go to cricket matches and footy games. Both being interested in military history, they walked the Kokoda track together in 2009. They’re close friends, but we’d only seen Aidan a handful of times. Things just worked out that way.
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.
That was a lunchtime drop-in. This visit would be different. When Jim told me Shaun was coming for, ’A night, maybe two,’ of course I said great. I love Shaun – he’s a terrific bloke – he loves a chat and a wine – two of my favourite things. But I worried. Would Aidan sleep well? Shaun told us years ago Aidan once spent the nights in a holiday house wandering hallways and slamming doors.
I wondered how our kids would handle it. Our son Ben is three months younger than Aidan, and he’s never spent time with a person with a disability. Same goes for our girls, six and nine. Would they be frightened? Anxious? Upset?
Worse, what if they said something hurtful? I didn’t think they would be deliberately mean, but I worried about Ella. Thoughtlessness can be as hurtful as deliberate cruelty when you’re nearly nine.
I wondered if I should, you know, prep the kids?
In the end I thought, nah … Shaun is our mate, and Ella and Aidan are his kids. All kids can be a bit weird. Once you stop looking for an explanation, it’s easy.
So how did the visit go?
It was great. Mainly because Shaun and Ella were easy company and Shaun’s matter of fact attitude towards Aidan’s disabilities and abilities.
Shortly after they arrived, Shaun said to our kids, “Guys, Aidan’s like a giant 18 month old. If he stands in front of the TV, you can ask him to sit down. If he takes your food, say, ‘No Aidan.’ He understands more than you’d think.”
It was good advice. Aidan understands quite a lot – an amazing achievement by him, his parents and his teachers at Sydney’s Giant Steps School. He can take his sandals off (a skill that took six years to teach), and he knows to wait to start eating – an important skill as Aidan is very motivated by food. ’Watch him, Kate,’ said Shaun ominously as I made a cup of tea, ‘Aidan is like a seagull. Turn your back on that toast, and it’ll be gone.’ My toast was safe but later that day I lost half a sausage roll. Lesson learned.
Mostly though, our kids treated Aidan as Shaun does – with kindness and patience. Of course, it was easy for them. It was only two days. Nothing. I’m in awe of Shaun and Leah who do it day after day, year after year.
Aidan likes the surf. All moving water, really. He watches it like other eleven-year-old boys might watch a cricket match. It’s almost hypnotic, but a big wave gets an excited whoop. He stands hip-deep and moves with the waves, holding onto Shaun all the time – not frightened – just reassuring himself Dad’s there.
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.
Editor’s note: The author ran this piece by Aiden’s parents who were excited to see it published on Mamamia.









132 Comments so far
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Whilst at family party this week, I was asked by a well meaning lady “will your son always have autism or will he grow out of it?”. Everyone was upset and thought I would be offended. Why???? It was an honest question from a person showing an interest in my son, who she had also commended on his beautiful behaviour, manners and gorgeous face. I would prefer this any day, to someone who ignores him and his condition. It is all about education, not about shaming people who are trying to learn something!!
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Beautifully written article, I loved it. Kate writes with honesty and from a kind and loving place, I find it hard to read the critical responses.
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I thought Kate’s post was honest, thought-provoking and real, she’s obviously a great mum too as she was thinking about her own children would feel in this situation – isn’t that every mother’s role? To be an advocate for their own child – obviously this takes on a whole new meaning for mothers of children with autism, but at the end of the day we are all just trying to do the best we can with our kids, no need for the judgement and self righteousness regardless of circumstances
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Loved it, Kate. Genuine and heart felt.
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Thank you Kate! Aidan had a great time with your family. He enjoyed the beach, the giggles and of course the food!
Leah x
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Kate – brilliant article!
Leah – you and Shaun are amazing parents! And of course, Miss Ella is the best little sister!
As for Aidan, he’s a beautiful & happy boy, much loved & valued by his family and friends.
In my mind I can picture Shaun in the shallows with Aidan – perfect imagery!
Lx
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I’m an ABA therapist and work with children with Autism 6 days a week. I learn from them just as I teach them.
One thing I wanted to say is please don’t feel like you can’t talk to them, they hear you, even if they don’t reply. I’ve be very careful to chat away with my clients, I’ll make funny comments, make fun of my self if I do something silly, this teaches them “tacting” A type of verbal behaviour that is commenting on your environment, like “look! A plane!” It’s a very hard skill to teach, but just from me doing this, my ten year old client has started to tact, he’ll say “oh no tigger is sad! Stripes gone!” And other funny things, he has a brilliant sense of humour. Previously he wouldn’t tell me anything, now he can tell me little details about his day, it’s beautiful and makes me cry with joy!
This is just as important for non verbal children, they can be taught to use pictures (called PECS) they can hand you a card with a happy or sad face, a picture of the snack or drink that they want, anything really. From there you can get them to make a verbal approximation, maybe “chi” for chip when they give you the picture card, then give them the chip when they say chi, this gives them the motivation to speak.
Another tip, is to ask them to write it down, they might not be able to say “I feel sick” or “I want to watch tv” but often their writing skills are better than their language, so if they are frustrated and you don’t know why, or you want them to answer a question, ask them to write it down, you can prompt by writing ‘I want…….” and they can fill it in.
This is very important if you find a child who is lost give them a paper that says “my name is….” “I live at……” “my phone number is……” we teach very young children this so don’t underestimate their ability to do this
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I write this with the full expectation that the people who I feel most need to do a bit of self-reflection will not…
As a person who has a number of family members with autism, both ‘high’ and ‘low’ functioning, I really think people with children with autism who are hurling criticism at Kate need to consider what life would be like if their situation was different. As if you’d know all the correct terminology, be completely au fait with what to expect and feel no fear of the unknown. Why is it okay for you to call your child an ‘autie’ but not for Kate to put the disability before the person?
Kate – great article.
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Almost scared to post, but I enjoyed the article and think its unfortunate, but probably to be expected that some will be offended. Just my thoughts.
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Many families of children with serious disabilities lose the friendships and social networks they previously had. Friends and acquaintances are apprehensive about the possible challenges or disruptions of being with a child with a disability; invitations and social inclusion may dry up. And being honest, some children with a disability do create genuine challenges socially, and do have different needs. Being a parent to a child with a serious disability can be extremely isolating.
These families need their old friends to stay around. And those friends need to be able to express their feelings and ask their questions honestly, as Kate has done. There is absolutely no value to anyone in keeping your mouth shut for fear of offending, but then withdrawing friendship and interaction because of your fears. I believe that honest, open reflection on our feelings is always a good idea.
So, bravo to Kate for being honest and real, and I hope the friendship between the two families continues to flourish.
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Hi everyone,
I know the debate about this piece is a vigorous one and we want to let everyone have their say. To make sure that happens, please remember to stick by our dinner party rules (see comment guidelines, just above the commenting box).
If you are rude or snarky or abuse the author, then your comment won’t be published by our moderators. Of course you are entitled to your opinion – so express it politely and we’ll make sure it gets heard.
Thanks in advance.
Jamila – Ed.
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Lovely post. I always enjoy your writing, Kate.
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As the mother of a child with a lifelong disability, I found this article quite ignorant. Instead of trying to highlight this child’s accomplishments, the writer pointed out how many years it took to learn and certainly made sure to mention the son is still in diapers. It did, however remind me of how far, we as advocates still have to go in teaching acceptance.
I felt bad for this little boy’s parents and most of all, for him, that a family friend would have such an ignorant point of view. I honestly wouldn’t want to know if people feel like this about my child, but hey, different strokes for different folks.
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Until you had your child and had to deal with their disability, how much did you know about it? And how long did it take you to become clued up on the terminology and issues surrounding it?
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Well, growing up the city owned the house across the street from me, it was a transition house for people with disabilities to learn to live on their own. The people became our friends and some still are. I was also a self contained classroom assistant in junior high/ high school and worked on the Alzheimer’s unit of a nursing home. As well as babysitting a little girl whose brain stem never connected to her spine.
I guess that’s why I was more prepared than some that my child’s diagnosis wasn’t a death sentence, just a different life than I had expected.
I understand people outside of the disability world don’t know terminology, I completely understand that and take no issue. When you have a child with a disability you become an expert in a matter of weeks to months. Part of the obsessing and looking for answers and information, I guess.
I really wonder how this boy’s mother feels? This is her husband’s friend’s wife, right?
It reminded me of the viewpoint from the 1970′s or things you would expect an elderly person to say. You know their heart is in the right place, they’re just ignorant. I’m heading out, but will gladly answer any more questions if you have them, coming from no ill place.
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In terms of being ‘clued up’ about correct terminology… the writer is a professional author and this is a news website… it’s not so hard to take a comment to check on the correct language when writing about issues like this. Journalism 101.
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Obviously the family don’t think this piece is ignorant if they were happy for it to be published. I think there was plenty of acceptance, the author was concerned for the comfort of all.
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I don’t think Kate meant to highlight Aiden’s disability at the expense of his achievements, as she explained some very wonderful achievements he has accomplished. I have the impression she was just trying to expand our understanding of the situation and Aiden’s condition, particularly for readers who may have limited contact or knowledge about people with disabilities. Admitingly, I think Kate was quite brave in writing her honest thoughts/experience (ignorant or otherwise). I really value feedback from those who have a much greater understanding than me but I would be quite nervous about publishing my experiences and thoughts in fear of offending others or being deemed ignorant or rude rather than as someone genuinely trying to ask questions and discuss these issues to improve my understanding and actions.
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I actually felt the writer clearly described both his limitations and some achievements, to me she was giving the readers an excellent understanding of this child’s disability.
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I really think some people are just looking for a reason to be offended. I recently had my sister come to stay for a week, so for the first time I got to pend more than a visit with my nephew who has Down Syndrome.
Nothing annoys my sister more than the way people romanticise Down Syndrome, they aren’t always happy,smiling bundles of joy. Raising a child with Down Syndrome is bloody hard work and my nephew at 13 already weighs the same as my sister, imagine her trying to cope with a tantrum in the shopping centre, I was almost in tears watching her and she couldn’t let me help as that upset him more.
I know this article isn’t about Down Syndrome, but the negative remarks are sometimes laughable, my sister loves her son, but given a choice before she had him and she would never have “chosen” this life. Our whole family worries about what is going to happen to him when she dies
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I think this post is very brave and incredibly honest.
I do understand the concerns of those in the autism community (apologies if I have used the wrong expression there). But … I think it’s important for people to tell the truth.
Kate was anxious about having her Godson to stay with her. She was worried about coping with his high-level autism.
Surely she is allowed to admit that?
What I took from this post is that Aidan is happy. That his family functions perfectly well. And that Kate realised that she didn’t need to be scared.
The more myth-busting there is of autism, the better. And I think many many families who have no experience with autism are perhaps scared or nervous or anxious about what it looks and feels like.
We shouldn’t attack those people for feeling that way.
The best way to close the gap to understanding is not to shame people for saying “I’m worried” but to support and encourage them to see that there’s nothing to be scared of.
That’s just my two cents.
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Well said Bec. A very worthwhile contribution to the discussion…definitely worth more than 2 cents
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Perfect Bec!
You wrote everything I was thinking, but couldn’t put in words.
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Thank you Bec. This is exactly the spirit in which Kate wrote this article.
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Just beautiful Kate. Thanks for writing such a heartfelt and honest piece about your experience with children with autism and their very special parents.x
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I think people really need to get over the whole idea of autism being particularly special. Stop it with the hand-wringing and the PC overload and excessive playing with semantics. A boy with autism is autistic. A person with a disability is disabled. Call it what it is, call it what they are. Those kids are not normal by definition or how the average person sees as a normal child. I applaud the author for being honest. Dealing with the unknown is scary. It can cause anxiety and I did not read this article as Kate saying that Aiden’s condition was a bad thing – just an unknown and she was understandably concerned that she might get things wrong. She speaks as someone who has had very little to do with anyone who might be thusly affected. I cannot and will not blame her for that. People “in the know” should be much more aware of this factor rather than getting all defensive about it.
And just to qualify what I’m saying and to detail my own experiences in this matter, my little sister is a high-functioning autistic, to the point where most people don’t know she is until they spend more than an hour with her. She knows she is different. She hated it when I tried to explain it to people when I was a teenager. She gets frustrated when people try to treat her in any particular way that isn’t the same as everyone else when they figure it out. In her 29 years, it’s been hard but it’s also been a joy. She’s quirky and we love her for it. Her husband loves her for it too. There are other people in my family who are autistic on varying levels too – and we’ll deal with people who do not understand with the same patience and understanding and respect as we expect to be dealt.
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Thank-you for articulating this perspective. I similarly have someone in my immediate family with autism and I feel that it’s okay to acknowledge difference and be truthful about both the joys and the hardships – not only for the individual – but for all those people who love them dearly and are part of their existence. We can be utterly respectful and compassionate when having this conversation – I think it is important that the community gains a better understanding. I truly understand the concerns some people have about using individuals – particularly children – to feel superior or relieved about their own abilities or the ‘normalcy’ of their own children – but I think most people just genuinely want to be more supportive and informed in their attitude. I think this was the aim of Kate’s piece.
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As a parent of 2 children with autism, this post feels condescending. It was easy for you because your children are so lovely and nice? Oh. How lovely for you.
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Georgie, please explain what is wrong with someone who has had little to no experience with autistic children voicing their concerns about making sure that someone like Aiden is treated in the correct manner so that not only he but his parents are happy? Because that’s all I saw in this post.
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What I said was that I found the post condescending. The general tone of the article – to me.
We have just been away staying with family for Christmas and while it was a very nice and pleasant holiday, I had a little pep talk from the people we were staying with every night after the boys went to bed. “Oh they were really good today”, not seeing that the 4 or 5 meltdowns they had per day (while the other “good” children waited paitently) were actually ground hog day for us. Over and over again.
I”m not about calling my children “special” and I’m not about calling us “special parents”. We weren’t chosen by god for our “amazing job”
One or 2 days (even a couple of weeks) spent with an autistic child is very very different from spending a lifetime with one. As I’m sure you already know.
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and as the author pointed out…
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As a SIBLING of an autistic child I really enjoyed this article.
Maybe you should try reading it with an open mind.
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Aaaaah kids. You know what? It makes me feel whatever the hell it makes me feel. Much in the same way when people tell me I must be a really special person to be chosen to look after and care for my really special children makes me want to scream, this article makes me want to scream.
I love my children to the ends of the earth and I’d love them to the ends of the earth with out autism too, and I’d give anything to have it taken away, because I would really like to have a conversation with my 9 year old without it ending in him screaming at me. I’d love to have a conversation with my 7 year old, full stop.
I’m living with autism on a day to day basis and our struggles are not met on a “weekender” basis. I’m parenting my children with autism, and I’m parenting my daughter without autism and trying not to have her end up feeling like after we’re gone, she’ll be the one parenting them.
So please don’t ask me to justify my feelings in relation to this article. Because that is more insulting than anything that this article makes me feel.
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Kate.
Thanks for sharing your honest and lovely written account of this experience.
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‘He seemed to be going backwards.’ How exactly was he going backwards, and why is this word ‘backwards’ still being used when describing people with a disability? I don’t find the article to be brave or revealing in any way. It just contributes to the prevailing ignorant outsider’s point of view.
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I think maybe it’s because with autism, kids can seem like they are developing within the normal limits for their age and then regress, especially verbally.
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Perhaps he was losing skills he had previously mastered. Very concerning for any parent and not something to be ignored. It’s perfectly OK to talk about what actually happened, I believe.
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I read this quite simply.
People on the Autism spectrum show regression. In language, and many other aspects of development.
This article focussed on a weekend when the child is aged 11. I can see why the author brushed over what had happened 9 years earlier, at a time when the child in question wasn’t even diagnosed.
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Thank you for putting this ‘out there’ kate. I have a seven yo boy who has brain damage and is autistic. I can tell you that that experience would have been just as hard for your friends and they will be feeling just that little bit more at ease knowing that they successfully pulled off a stay at your place. And i hope they are enjoying their ‘rockstar’ status right now! I find it hard to believe that there are so many people still unexposed to the life of a special needs family unit!! Give me quirky kids anyday
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As person with autism not as bad as here but thought it was perfect and not mean but honest. I thank Kate for this it is honest and people here judging should look at their own honest because they may be ashamed they would react the same way but wont admit it or worse treat us worse. Good work and thank you for being honest and showing that all we need is love and understanding.
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Disclaimer: I have bias-massive bias when it comes to this issue. My own younger brother who is 26 years old has severe brain damage with a diagnosis of autism thrown over the top for good measure-medical prognosis, not me been flippant. Lots of the parts about Aidan I recognised in my own brother-a love for the water, inability to sleep, and yes we’ve used the same description to help other people understand ‘think of him as a big toddler’. And I loved Kate’s piece. While everyone is jumping up and down and wringing their hands, I think Kate should be applauded for her honesty. In the same way that as a society we need to lose the stigma of talking about depression and mental health, I think we also have a long way to go in talking about disability. What Kate expresses is perfectly normal and real. In fact it captured perfectly what my family has experienced in our 26 years with my brother. Both in other people’s reactions to us and Luke-with a little bit of worry and anxiety about how they’ll go and in how it is to live with. I think Kate’s observations are beautiful-their is no manual, no ‘expert’ will know a child better than their own family does and a beautiful acknowledgement of how hard it must be for parents who do it ‘day after day, year after year’. I had a similar conversation in the car coming home from Christmas with my partner who said he can answer my brothers non stop question (and I mean 24-7 thisclosetoyourface anxious questioning) for a day, but your parents have done that every day for years. A point which Kate thoughtfully makes as well.
So Congrats Kate on what I think is a beautiful and thoughtful piece of writing which sheds light on something which needs more lighting up, and heartfelt acknowledgement to Shaun and Leah, my own parents and all other parents of children who have different disabilities and abilities, of the enormous job they do, each and every day.
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I agree wholeheartedly with your post!
But you, and all family members, should also be congratulated, for the unconditional love you have as well. I found it clear from what you have written just how much you love your brother.
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As a person who works in the disability sector and with autistic people, I can understand why this article has received criticism. Objectively I can see what she was trying to say- I hadn’t had experience with a person with Autism before, I had some anxiety about how it would go and it turned out it was a great few days. Unfortunately ignorance with good intentions is still ignorance.
I believe this issue with this article stems from a lack of understanding and appropriate use of language when discussing individuals in minority groups. The fact that she constantly highlights the “differences” between the other children and Aidan is not probably intentional but still just as cringe worthy. She highlights the issues and is negative rather than providing us with a positive insight into his life.
The references about his normality are offensive, “It had been easier to think of him as a little boy who might one day be ‘normal’ and that it was becoming clear “there was something wrong with Aidan.” I don’t think she probably intended it to be seen this way, however that is how it reads and this is why people are criticising this article.
Apprehension of the unknown is perfectly understandable and any person can relate to this in a variety of situations however it is good for children, and adults for that matter, to experience diversity. This is a prime example.
Kate I think your heart was in the right place with the essence of the story however ironically your own words sum up the general consensus on Twitter about this article that “thoughtlessness can be as hurtful as deliberate cruelty.”
The biggest barrier that people with disabilities face is the attitude of others. Consider this next time you are in a similar situation and perhaps your next story will be met with glowing praise. It had such potential to make a big difference.
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Brooke – you rock!!! That is exactly the attitude needed within SOCIETY….
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My very first comment on Mamamia…
Love the way you write, Kate – so heartfelt! I always admire the resilence that people with disabilities – and their parents – have. Makes me put my life in perspective.
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I think this article sits uncomfortably with many because it is an honest and open account of the fears and concerns we can all experience when taken out of our comfort zones.
To me, the author’s lack of correct terminology, understanding of adjective/noun protocols and all other things deemed ‘incorrect’, further illustrates the anxieties experienced by humans when dealing with situations that are unfamiliar.
What I loved about this story was the obvious patience and empathy Aidan’s Dad (and likely Aiden too) had with these friends and their children as they informed the ‘unfamiliar’ in what to them is now (but has not always been) the everyday…what a beautiful thing to do!
I also can’t imagine that if the author and her family were really in any way judgemental or condescending, Aidan’s family would willing subject Aidan or themselves to this…either physically or in print.
I too cried when I read the last paragraph about two mates and a son, standing in the waves, all three connecting on so many levels, and in so many different ways.
I just don’t see how anyone can miss the intent of this lovely piece.
Thank you so much.
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What was this writer was trying to achieve?
A congratulations for tolerating a person with special needs for a few days?
It’s full of pitying the poor suffering little autistic boy and his parents, relief after he had left, and fear of how on earth a boy with special needs could live in her house for a few nights with her non-special needs children. Heavens, he might not sleep well and wander around the hallways.
I’m sure this wasn’t the intention, but the attitude in this article has upset me.
My sister is Autistic, and they are not creatures to pity and tiptoe around, to fear and cause anxiety just because you’re scared that they’re different.
This article doesn’t raise awareness or embrace autism, I will not write a positive message congratulating the writers’ successful interaction with an autistic person.
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Thank you Daisy, this perfectly sums up how I have been feeling about this article. What right do we have to pity the lives of disabled persons and their families? Why should we congratulate people for learning to be more sensitive to the needs of others? It’s something we as a society should be trying to do all the time. We should be working towards understanding diversity. We do not deserve congratulations for making personal discoveries about disability. All we need to do is imagine the frustrations of disabled people who are constantly met with a lack of empathy and understanding for us to see that we shouldn’t simply praise people for tolerating others. Thanks for beautifully summing up how I’ve been feeling about this.
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I’m currently reading ‘The Boy who fell to earth’ by Kathy Lette. Perhaps some of the people criticizing would benefit by reading this insightful account (based on real life) about mothering a child with autism.
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‘When Horse Became Saw’ is another book, which is a wonderfully written true story of one family’s journey with autism. A x
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“Ella is nearly nine and as delightful as only a nearly-nine-year-old girl can be” but not Aiden. Aiden will steal your food if you turn your back and you must have the patience of a saint to stand more than two days with him.
This article is Othering and it is condescending and if you wrote a story about my autistic son in this manner I would not be excited, I would be furious..
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Clearly Aidan’s parents weren’t, because they were happy to have it published.
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I’m not giving their opinion, iIm giving my own.
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Yes Michael is clearly saying that contrary what these particular parents report he would not be excited he would be furious.
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I disagree. It was very human and lovely. Kids are different and Kate’s illustration of this and of Aiden was touching. It was as much about her and her reaction and perceptions as it was about Aiden.
Good for you Kate. I am sure your kids learned something that weekend about patience and compassion.
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Disabled people don’t exist to teach you something that you might be lacking.
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We can all learn something from somebody!
What’s wrong with Aidan and his parents’ being the guides in this instance?
Sharing knowledge through experience, in a loving and meaningful way, leads to the breaking down of barriers that isolate and engenders equality for all.
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Do you think really believe that disability is required so that that people will learn to be good citizens?
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Erica are you saying we can learn more about ourselves because of children like Aiden?
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Of course they don’t. But if someone can take something away from spending time with someone with a disability, conquer a little bit of the stigma that surrounds them, then surely that can only be a good thing? A single step starts the journey to acceptance and normalization of that which people have no baseline to work with.
Kate – I think you wrote beautifully and from the heart about an issue that was bound to cause contention. Well done.
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Exactly – there’s nothing wrong with worrying about how you’re going to cope with something or someone you have never had to deal with before.
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Disability does not exist to teach you or your kids a lesson.
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No-one is saying it is. But people do learn lessons when they are forced to confront things they aren’t comfortable with. In this case it was autism. In another case (to refer to stuff published here) talking to a woman in a niqab. It isn’t using or blaming the people with the difference – it’s the writers saying “Well, I was worried about this difference and how I would handle it, and it turns out the similarities outweighed the differences”.
I just had a friend here who has a son with ADHD – she often says how she doesn’t do stuff with him or take him certain places at certain times because he just had meltdowns and it’s no fun for anyone – him or anyone else. Should she be chastised as well?
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please don’t compare adhd to autism. they are two very, very different disorders dependant on the spectrum. I work with autistic children and this is just offensive to their hardworking parents.
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I didn’t. I said that I have a friend who doesn’t take her son some places at some times because of his condition.
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I agree with you Michael, disability does not exist to teach anyone a lesson.
But are you saying you’d rather people NOT learn anything about disability and continue to stick their head in the sand and ridicule?
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I appreciate with an autistic son, an article about another autistic boy would feel close to home, and based on your response I can see it’s hit a nerve for you personally.
For me personally, as a reader on Mamamia I got a lot out of it. I didn’t read into it in any way being condescending to Aiden or comparing him unfavourably to his sister.
In fact what I got from it, as someone not having any experience with autistic children (or adults) is that it reinforced clearly how there is place for everyone. People can find their own joys based on their own wiring, that we don’t all have to be the same. And that love and understanding supports everyone involved.
I also respected without judgement that there are things that reflect: ‘it is what it is’, and if Aiden steals food – big deal. He also can be transfixed by waves and be content watching them for hours. Both register as facts about Aiden for me, rather than one being a slur.
I am grateful to have had this article shared, it was a wonderful reminder that when we open our hearts, remove our reservations, we can experience so much more.
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Hey I’m not taking sides, but to quote Kate:
Ella is nearly nine and as delightful as only a nearly-nine-year-old girl can be.
Aidan is eleven and a half, and he’s profoundly, heartbreakingly autistic.
Kate did not once say :
Aiden will steal your food if you turn your back and you must have the patience of a saint to stand more than two days with him.
You did.
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Actually she did. She said that when her back was turned food disappeared and she learnt her lesson.
She also said that it wasn’t all that hard BUT we only had him two days.. his parents have him every day.
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Because folks the reality is that my adorable son, Aidan, will steal your food if you turn your back!
I’ve just retrieved my work shoes from the next door neighbours yard….he likes chucking things over fences.
It’s hard work, it’s relentless and if people aren’t used to it they need to know how to deal with it – don’t be offended folks, we adore our boy – these are facts not fears.
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What is Othering?
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Best part of the story was that yes all kids are weird sometimes!
I am sure Aidan is as loveable as the next kid
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Social inclusion through the art of teaching coking to young people with a mild disability. As co-founder of the Many Open Doors Foundation (MOD) I find myself now reading, and writing, about all sorts of stories related to autism, cerebral palsy, brain injury, etc. I recently wrote a blog about animal therapy and how companion animals are so important for people with a disability.
One of the comments the blog received was how some domestic animals (particularly cats and dogs) have a kind of ESP and non-verbal language so important for people with an autism spectrum disorder. Interesting.
Thanks, Kate, for sharing your experience. I don’t know why you would have received any backlash. It’s important that children without a disability understand that other children may have different challenges but they still need love, respect and parameters.
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I thought this was a fantastic article, an honest account of what it can be like when dealing with a person with a disability when it it out of your usual realm of experience.
I have a cousin with intellectual and physical disabilities and I would rather have others ask questions about where he is at with understanding and how to interact with him than have someone completely ignore him. He is a lot higher functioning than he looks.
I am sure the PC brigade will have issues with such an honest opinion as expressed so eloquently by Kate, but I feel her nervousness is a completely real emotion and I am glad she had the courage to say what she was feeling. And so would Aiden’s family I am guessing
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Oh, my.
I kind of understand the author’s intent but what I felt come through for the first 2/3′s of the article was fear. Fear of a boy with a disability. The last third was written with relief. Relief that the visit went ok.
But…erm…I’m not sure quite what it is but the article just doesn’t sit well with me.
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Really? How did you see ‘fear of a boy with a disability’?
Kate expressed ‘worry’ instead – worry that someone would say something insensitive, worry that he wouldn’t sleep well, worry that her own children wouldn’t ‘handle it’. Concerns about how something will pan out is not the same as fear.
I’m going away with some friends in a few weeks and, not having done this before, I am apprehensive about how the trip will go. And when it’s over, I feel relief that it (hopefully) went well. And these are people I know well!
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Ì think more than fear, it came accross as honest.
There are a lot of people who are afraid as of with a lot of other things, of the unknown of a disability. I think Kate wrote this so beautifully and it is such an honest piece.
It’s funny, my daughter had a child at her day care with severe disability. The kids saw no difference and treated him as a equal. He attended my daughter’s birthday party and the kids welcomed him with the biggest hugs.
Sometimes we can learn a lot more from children than we can other adults.
PS Please, please more of these type of articles!
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I think at first what I was picking up was a little ‘there but for the grace of god’ given that their children were both boys and so close in age. However I think it was unintentional – just a way of drawing you into her narrative and giving you a back story. Besides, even if that was the situation, I’m sure, in this kind of situation, every single parent amongst us would be quietly feeling the same way – its human nature to look at the ‘could have beens’ and feel relieved with whatever crazy mixed bag of troubles we ended up with in life. Cut her some slack.
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I have someone close to me with a mental illness. When spending time with him, 2/3 of the time I do feel some fear, and then for the last 1/3 of the visit I start to feel relief that everything seems to have gone off ok. Why? The unknown. The unpredictability. Does saying that make me a bad person? No, just honest.
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A very thoughtful, lovely post Kate, I love your writing. Not sure what all the fuss/criticism is about, especially given that you had Aiden’s parent’s blessing for posting this.
Awareness is important and you’ve created this by writing about the experience from your perspective.
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This was lovely writing, Kate and honest. The last few sentences made me cry.
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I find this article offensive because it presents a deficit point of view of people with autism. The automatic assumption is that Aiden’s life is lesser than lives lived (i.e. Kate Hunter’s family) by people without autism. People without disabilities need to get over the idea that people with disabilities are just a screen upon which to project their own ‘journeys of self discovery’. I don’t have autism, therefore, I could not know whether Aiden’s quality of life or experience of life is any better or worse than mine?
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I read this article differently to you. I read no assumption about Aiden’s quality of life or the value, to him or his family, of his experiences.
Many people have no direct experience with people with disabilities or extra needs, especially not in their own home. It wouldn’t be considered offensive to put some effort into thinking about ‘what might happen’ if an 18 month old was visiting a non baby-proofed house. So considering ‘what if’ in a situation like this seems reasonable. Articulating it in a forum like this is honest and brave.
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And I found it enlightening. It’s an article that shows us what Aidan is capable of, how he is different to other children and how he is the same. It also shows us a caring and supportive family in action.
People fear what they don’t understand and this often includes people with disabilities. I don’t see this as someone (Kate) projecting a ‘journey of self discovery’ but rather as someone creating awareness and understanding about autism.
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But Sara, that is exactly how I saw the article – Kate realising that she has pre-conceived ideas on something she knew little about.
What a fantastic way to squash those assumptions by being honest.
There will always be people out there that are not automatically open minded such as yourself. Sometimes it takes an honest account to show that your pre-conceived ideas are not always correct.
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Thank you Sara. You have succeeded in voicing a disquieting feeling that I have had for a while, but had trouble describing. It is that those with autism are living a lesser life and are damaged in some way (according to some commentators damaged by parents who vaccinate). My granddaughter has autism: she is a happy kid and we are happy with her. She loves school and swimming and books.She has difficulties and differences but we would not exchange her and we are not undergoing journeys of self discovery through her. We are not stronger for having her, nor do we believe that God gave her to us, because He knew we were special and that we could “handle” her.
Nevertheless, I do not believe that Kate Hunter’s article is offensive. it is a bit like one of those “Day in the LIfe” articles one sees from time to time. Kate had ideas about what life was like for a parent with an autistic child. It was not what she expected and she wrote about it. It was an honest account and you can’t argue with that.
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vanessayoung,
How many times can I agree with your response??? I am so over people assuming/commenting on how having a child with a disability makes one ‘stronger’. You know what? It doesn’t. The parent’s personality pretty much stays the same – a driven parent will do a lot for their kid, a passive parent will do less, just like in NT parenting. The suggestion that we all become driven superheroes drives me crazy and is patronising. Especially because it the comment is nearly always accompanied by ‘that’ voice.
I have ‘learnt’ just as much from my NT child as I have from my autie.
And the ‘god only gives you what you can handle’ (or it’s partner – ‘you were given this child because god knew you could handle it’), well don’t blame me when you hear me saying ‘stuff you, you cruel bastard of a god’.
Ok, rant finished.
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I really like your writing, and this bought tears to my eyes.
Lovely piece. Well done.
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I see there are limited posts from parents who are in the position of Aidan’s parents and their reactions to this article. The reaction from several individuals ( of whom I have sent the link ) towards this article has not been favourable and these are people who I know and admire as parents of beautiful children who have Autism. I do think an opinion piece from the P.O.V of a parent of a child with Autism would be very different to what has been written here.
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that’s a big assumption Michelle, just because i don’t write I am in this position, it doesn’t mean I’m not. I don’t need to justify or advertise that my son has Autism. he is my son. The End. My existence, nor his, is dependant on a diagnose made many years ago. I don’t start conversations with My son has ASD so therefore i think………….
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I actually took note of this on twitter, with people reposting it, criticising it’s publication. I then read it with interest. I am perplexed as to what the problem is. Not that I want to invite too much criticism of the post, but I’m interested in what could possibly be the problem. I think it was an incredible honest, but ultimately uplifting post, that leads both the author and the reader to a better understanding of autism. I then read the comments below, and some people criticized some of the wording, which I understand, but that was acknowledge and was going to be changed (And I agree – the correct term of ‘low-functioning autism’, wouldn’t mean a lot to many people). What we have to understand is, not everybody understands what it’s like to live with a child with special needs. That’s what this post seemed to aim to do, and successfully achieved.
My best friend has a child with a vague title of a ‘global delay’. There is no official title for her condition (a fact her Mum finds hard, it’s easy to be able to explain to people if you can call it something). It’s amazing how people, just don’t get it. I don’t think they mean to be rude of judgmental, it’s just not in their range of understanding. Too often people just say, “oh, I did this” and “she should do that”, not getting, my friend is dealing with a child, so very different to their own.
Maybe I’m off the topic a bit. However I think that this post is beautifully written, and it should be acknowledged for the heartfelt sentiment it was obviously written, not idle criticism. I think we should acknowledge, unless our child has special needs, none of know how we’d cope in the situation, or criticise people who are making a sincere effect to at least try and understand.
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Well said. As the Mummy of an autistic three year old boy I feel more than qualified to offer my opinion. I wonder how many of those writing and criticising this piece have any experience looking after, interacting or parenting a child with a disability. Quite frankly as long as someone shows my child respect, care and love I am not that worried by semantics as to low functioning, with/out disability. He is simply Isaac, he is three and he has autism and he is our friend (as one of our beautiful friends said) I applaud Kate for being so honest because just as she was worried or even fearful about the visit so too am I sometimes about visiting someone. How much easier it is when everybody is open and honest. There was nothing offensive about this post…. it was an honest piece about her perceptions and the story of the stay. I found it beautiful and very much in keeping with our experiences with friends who often comment about what Isaac adds to their world and ours. If only everyone could exercise some of that understanding and congratulate Kate on an open/ honest piece. Less time spent on semantics and bickering and more time in the world exercising real tolerance would benefit some people. Sometimes life is not so black and white and it has never been more true than when parenting a child with a disability.
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What is “global delay”? I saw it for the first time on kindy enrolment forms that I was filling out yesterday.
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Global delay is a delay in at least two out of four developmental areas, cognitive, self care, speech or social.
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My understanding is it is a vague as it sounds. Going my my knowledge of my friends situation – her daughter has a ‘moderate’ learning delay, however she’s also classes as having a physical disability due to her very low muscle tone. She’s also diagnosed with behavioural issues. She’s in a IO class, which is in a ‘special needs’ unit, not a mainstream class. Will all those things, there is no other diagnosis, they’ve investigated all the diagnosis that would get a label eg. ADHD. There is seeming no reason for her delay, no category (for want of a better term) that she falls into. So it’s been classes a ‘global delay’. I hope that makes sense.
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Global delay means that all areas of development are affected. For example, a child with autism may have delays or difficulties with language and with social interaction, but in most cases may have typically developing motor skills and often strengths in some cognitive areas. Children with global delay have difficulties with all areas of development, particularly all areas of cognitive development. It is a description of symptoms, rather than an explanation as to why there are problems. Global delay may have a range of possible causes (eg a genetic condition or acquired brain damage), or the cause may be unknown.
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Its pretty much a catch all for when a child shows delays in more than one area (speech, fine motor etc) and despite investigations a reason for those delays can’t be found. Unfortunately to access disability services etc, some sort of diagnosis is needed, so sometimes, it’s “global delay”.
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The definition of Global Developmental Delay varies from country to country and state to state. In WA it requires a child under the age of 6 years demonstrate a delay of more than 12 months in at least two areas of development on an approved standardised test of development.
The diagnosis is only valid in children under 6 years of age.
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“all kids are weird”…. so autism is “weirdness” now.. weirdness implies pathology, creepiness, strangeness in some way. Children with autism are not “weird” they are children with needs that are different to others, yes, but this is extremely exclusionary and bordering on offensive. (and before i get jumped on, i was a former case manager for young children with autism so i do have an understanding of ASD) i don’t think you’d get away with calling a hearing or vision impaired child “weird” so what gives you the right to say that about children with autism?
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No, she said ‘All kids can be a bit weird’. I am fairly sure Kate wasn’t singling out children with autism as weird, but was making a point that all our children have their certain quirks. I could write a book on all the weird things my kids do…
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the other child, Ella, wasn’t described as weird, she was described as “is nearly nine and as delightful as only a nearly-nine-year-old girl can be”
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Exactly – read the post in the spirit it was intended. Maybe quirky is a better word but Kate was just expressing her thoughts and to her credit she was open to the experience
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I am seeing a lot of criticism on Twitter directed towards this article…is it true that you’re not letting critical comments through moderation, MM?
Also, as an aside, what is going on with Mia and Twitter? Where is she?!
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Hi whippersnapper!
As always, comments are coming through so long as they abide by our dinner table rules. This might be a good point to remind people that if you’re rude or offensive in a comment, we won’t be publishing it. But if you’re politely disagreeing or criticising the author’s position, then of course that’s permissible.
Re: Mia on twitter. She’s on an indefinite Twitter holiday at the moment but you can track her down on Instragram if you’re hungry for some Mia
Jamila x
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I haven’t commented on this one yet, but since moderation started only about half of my (totally innocuous, I swear!) comments have been appearing. And no response notifications for aaaages, except for one from a MM staffer.
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Thanks Neola.
If you have a moment, could you flick a quick email to info@mamamia.com.au with your browser details, IP address etc? We’ll get the tech guys to look into it. Occasionally we do lose comments to spam (especially if you’re posting links) but it shouldn’t happen on a regular basis. I’m sorry, this must be annoying!
Jamila – Ed.
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Jamila – I think that is really sad that Mia has had to take a break from Twitter because of all of the backlash prior to Christmas. (she mentioned something about it in her “see you later 2012 piece), particularly because Mia’s such a big fan of Twitter.
People really forget there is a real person on the end of a Twitter handle sometimes!
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Kate,
To be honest, I’m not the biggest fan of your writing. Not that it’s not good – it just doesn’t usually cover the kind of things that interest me. So I usually gloss past your stuff unless something catches my eye.
This was really, really interesting. Well written, without doing the subject a disservice by injecting melodrama or platitudes into it. It didn’t need it. You managed to make me really feel for Aidan’s parents and respect them without pitying them through an honest piece.
Great work.
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This article is copping a belting on Twitter and Facebook from a whole bunch of people, including plenty of respected commentators.
I can see where they’re coming from. But I think a lot of the criticism is pretty unfair.
Nothing in this article was written with the intent of being deliberately offensive. It’s simply an account of a young mother’s experience, when an autistic child came to stay.
She was worried. That’s not a crime, in fact it’s pretty understandable. Autism is quite common, but not extremely so. For many, their knowledge of the condition stems largely from their own experiences in school decades ago, when it was poorly managed.
But through the experience she learned she had nothing to worry about. In my books, that’s a pretty positive story.
If the story had run “A friend contacted me, asked if he could bring his disabled son to come stay, and I told him to take his (insert offensive stereotype) elsewhere”, that would be offensive. This is the exact inverse.
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Dan,
i couldnt agree more. i think it takes guts to put your hand up and say I’m worried about how it will go. many will hide behind their hands and whinge about the experience later.
Its really no different to my brother visiting with his new born. will she wake during the night? will her crying wake my kids. will my cats scratch her because he has never met a newborn? will i cope with the smell of baby spew and poo? seriously? we all have concerns. Kate just had the guts to put it in writing. I get anxious every time one of my friends visits with her kids, she is a little ocd and kid proofs anything that looks slightly dodgy within minutes of her arrival (some things i didnt even notice) do i dread these visits?? yes and no.
Would i ever have the guts to say it to her? probably not
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Just beautiful Kate. Your last sentence, “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” , made me cry.
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Me too – crying that is. In my experience, amongst all the tremendous effort of parenting a child with a disability or a delay, there are golden moments of simple ease and bliss and calm.
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Me too.
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Great post.
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I was more interested in hearing how Aidan (and his family) navigated his daily life than what we should call him. And before I get jumped on, yes, I do know how important it is to put the person before the disability.
Far more important to me was the amazing mix of pragmatism, patience and love revealed in this article – it showed me just one way in which ordinary people deal with the curly things life throws at them. Really moving.
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‘The bad end of the spectrum’? Perhaps saying Aiden had low functioning autism would’ve been better.
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My son has autism & often I refer to where he is on the spectrum in a similar way if I’m talking to people who don’t have a good understanding of Autism Spectrum Disorders. It would probably be better if I explained he has high functioning autism and what that means on a practical level, but sometimes it’s simply easier to say he’s on the “good” or “mild” end of the spectrum.
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Saying Aiden has low functioning autism means absolutely nothing to me, even if it does has a ring of political correctness to it. ‘The bad end of the spectrum’ and then a practical example, which is what the writer gives, may be a somewhat more blunt way of putting it but it certainly explains it better. Great article.
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That last bit made me tear up, thanks for sharing.
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What a fabulous read this was.
Thanks so much Kate for posting.
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