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10 Things That Shouldn’t Be Assumed About My Child With Autism

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1. Don’t assume that my child has low intelligence. Kids with autism are often capable of more than we give them credit for. Many of them have varying degrees of communication delays, which is why people don’t always realize the extent of their intelligence. As a result, they are often excluded from games and activities, when they should at least be given the option of participating.

2. Don’t assume that my child is a genius. When I tell people that my son is autistic, they immediately assume that he’s like Rain Man. Autistic savants do exist, but they are extremely rare. My son does have his strengths, and some of them could well turn out to be career material. But he’s unlikely to be the next Einstein, and people should not expect him to have some savant-like party-trick up his sleeve.

3. Don’t assume that my child doesn’t understand anything you say. Speech development in kids is divided roughly into two categories: expressive language (what a child says, or expresses) and receptive language (what a child understands, or receives). For many kids with autism, receptive language far outpaces expressive language, meaning a child who is non-verbal can understand and process a lot of what is said to him or her. It drives me crazy when people say things like, “Would your son like some juice?” when he is standing right beside me. Ask him if he’d like some juice. There’s a decent chance that he’ll answer, and the best way for him to develop his language skills is by practicing them.

4. Don’t assume that my child understands everything you say. Autism is an invisible disability. Apart from a very slight awkwardness in his gait, my son looks just like any other kid his age. You cannot tell just by looking at him that he has a disability. Therefore, one could be forgiven for assuming that he has the same language capabilities as other kids. If my son hesitates to answer you or act on what you’re saying, try breaking down your sentence into smaller, simpler chunks.

5. Don’t assume that my child “needs discipline”. Yes, I have on many occasions been “that mom”. You know, the one everyone is staring at because of her child melting down in the grocery store or making loud vocalizations in a restaurant. Most people, to their credit, are very understanding once they know that autism is in the picture, but there are always those who insist that a swift smack on the behind is all that is needed. I once had an elderly woman telling me, “In my day, no child was autistic because we were raised with discipline.” Here’s the truth: a meltdown can be awkward and uncomfortable for the parents and any onlookers, but it is a thousand times worse for the overwhelmed, anxiety-ridden child who is experiencing it.

6. Don’t assume that my child isn’t capable of misbehaviour. My son is twelve, and he has a twelve-year-old’s attitude. He is going through the same moodiness and unpredictability that other pubescent kids go through. It is easy to use autism as the default explanation for his behaviour, but as a doctor told me many years ago, “He is a boy with autism, but he is first and foremost a boy.” I have become quite adept at distinguishing my son’s “autistic” behaviour from his “typical bratty kid” behaviour, and I react accordingly.

7. Don’t assume that my child is incapable of emotion. Because he really isn’t. One of the biggest misconceptions surrounding autism is that autistics do not have the capacity for love and empathy. My son is one of sweetest, most loving people I have ever come across. He is full of hugs for the people he loves, and making people happy brings him joy. Here’s something he has done since he was little: when he wakes up in the middle of the night, he gets up to check on his younger brother and make sure he’s covered with a blanket.

8. Don’t assume that my child knows how to react to emotion. My son is undoubtedly an emotional being, but he does not always know how to respond to the emotions of others. And when he doesn’t know how to respond, his default reaction is hysterical laughter. This understandably appears to be incredibly insensitive to someone who is crying, but it’s a simple case of my son not knowing how to process something. He knows that crying is associated with sadness – he simply doesn’t know what to do with that.

9. Don’t assume that my child is not a social being. It is true that at times, social gatherings make my son uncomfortable. His tolerance for noise and crowds is definitely lower than that of most people, and for that reason we always choose to have events like Christmas and birthday parties at home. That way, he can retreat when he needs to. But in general, my son likes people. He likes being around them and interacting with them in his own way.

10. Don’t assume that my child is socially aware. To my knowledge, my son has never been around anyone who would deliberately want to do him harm. At his school, the general student body is tremendously respectful and protective toward the special needs kids. I have never had to worry about bullying or discrimination, but I know that this may not always be the case. My son is very trusting, as many people with autism are. He has limited sense of danger, as many people with autism do. He does not really have the capacity to understand that people can act nice but have not-so-nice motives.

This is an original post for Running for Autism by Kirsten Doyle.

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Disabled or Differently Abled?

Today is Day 2 of the National Health Blog Posting Month challenge, and one of the suggested prompts invites writers to address the weirdest aspect of their health. As a health advocate for my son George, who has autism, I am often struck by how odd this condition is compared with many other developmental disabilities.

One of the things that makes it different is the reluctance of many people, both within and outside of the autism community, to use the word “disabled”. Parents of children with Down Syndrome or cerebral palsy are allowed to refer to their kids as “disabled”, but I always have people trying to force me to use the term “differently abled”.

Yes, there are many things that George can do. He can read fluently, he was doing multiplication in his head long before anyone formally taught it to him, he has superb problem solving skills, and he knows his way around a computer better than I do. But when he comes home from school, he cannot tell me what his day was like. I have to keep a firm hold of him when we are out on family walks because he does not understand the danger of running out into the traffic. He does not know how to play with other kids. He will only take a shower if someone is in the shower with him, and at nine, he still needs hand-on-hand assistance and extensive prompting to accomplish the task of brushing his teeth.

To me, the term “differently abled” implies that George can do anything other kids his age can do, but in different ways. But that is not the case. There are things that George simply cannot do for himself – basic daily living skills that other kids master by the time they’re six. In my book, George is developmentally disabled.

And so what if he is? I am immensely proud of George. I adore his sweet, loving nature and I admire his absolute determination to accomplish his goals. Even though he is still so young, he shows a steel core of tenacity. This is not a kid who gives up. I feel absolutely no shame or embarrassment about the fact that he has a disability.

So why not tell it like it is? Why should there be a need to couch it in pretty language? Are these well-meaning attempts to avoid use of the word “disabled” not undermining our attempts to ensure acceptance and inclusion for people with all kinds of disabilities?

What are your thoughts? Are we heading into territory where the word “disability” cannot be used? Would you or do you use that word with reference to your own special needs child?

 

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The Princess And The Dragon

A few days ago, I was play-wrestling with my kids in the living room. They were beating me hands-downs. I mean, it’s hardly a fair contest, is it? There are two of them and one of me, so I was at a mathematical disadvantage right from the outset.

So anyway, there we were, rolling around on the floor. I was lying face-down trying not to choke on bits of carpet. James was sitting on my legs poking his very pointy elbows into my back. And George was trying to pull my head off my neck. All of a sudden, James lost his balance, rolled off me, and bumped his head lightly on the table.

Instantly, the wrestling came to an end (much to my relief, it must be said) and James started screaming in outrage, underscoring the theory that he was born with the drama queen gene that runs in my husband’s family. When I had managed to calm him down and convince him that not only was he not bleeding to death, he hadn’t even broken the skin, he said to me, “Do you know how much that hurt?”

“How much did that hurt?” I obligingly asked him.

He replied, “That hurt more than a pickle falling on my eyeball.”

James’ use of words is just incredible. His extensive vocabulary coupled with a colourful imagination results in word pictures unlike anything I’d be able to come up with. I mean, a pickle falling on your eyeball? How do you even think of that?

It beats the time we asked him to tell us a story, and he said, “Once upon a time there was a poo. The end.”

His imagination clearly wasn’t firing on all cylinders that day, although for a week after that, I couldn’t get the South Park song “ Mr. Hanky The Christmas Poo” out of my head.

More often than not, though, James does come up with really creative stories. It used to be that he would provide the plot and I would turn it into a coherent story, but now he doesn’t even need me to do that.

Yesterday evening, while I was cooking dinner, James was sitting at my desk busily working away with a piece of paper and a pencil. When he was done drawing, he joined me in the kitchen, showed me his picture, which depicted a girl standing at the window of a castle and a dragon flying by, and solemnly said, “I am going to tell you a story about this picture.”

I sat down with my boy and listened as he spun a wonderful tale…

Once upon a time, there was a beautiful princess who lived in a castle. She had long black hair and the prettiest dresses in the whole wide world. One day, Dragon came to visit the princess. She wasn’t scared, because this was a friendly dragon and she knew he wouldn’t hurt her. She took him to the back yard, and gave him tea and cookies.

The dragon told the princess that he wanted her to give him one of her pretty dresses. The princess asked why he wanted a dress, and he told her it was a surprise.

The princess had lots and lots of dresses, so she gave one to the dragon. He finished his tea, played in the sandpit, and then left with the dress in a plastic bag.

The next day, the dragon came back, and he had the handsomest prince in the world with him. The dragon said, “You were lonely so I made you a prince to marry. And my granny turned your pretty dress into a wedding dress.”

The prince and the princess loved each other, and the princess put on the pretty wedding dress, and they got married.

The end.

Personally, I think the princess was kind of slutty to get married to someone she didn’t know, but I still think it’s a lovely story.

(Photo credit: http://www.flickr.com/photos/pathfinderlinden/3118654532/)

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Band-Aid solution

This morning I had one of those little moments with George that I love so much, one of those “Wow” moments that indicate progress. I was engaged in my usual frenetic morning activity – getting myself ready, getting James ready, trying to find time to cram some breakfast into me, trying to keep up with James’ constant chatter and questions about why birds have feathers. George was still in his pyjamas – his morning routine is his Dad’s responsibility – and he was wandering around counting in his sweet little sing-song voice. I noticed him heading towards the stairs, and somewhat absently, I said, “George, where are you going?” George replied, “Upstairs”, and upstairs he went. I continued with whatever I was doing, and it was only about ten minutes later, when I was trying to shoehorn a reluctant James into his socks, that I suddenly thought, “Holy crap! George appropriately answered a ‘Where’ question!”

George’s speech – or the lack thereof – is a source of deep concern to Gerard and myself. We know that he can speak – in other words, he has the physical capacity to do so. We know from the sentences that he constructs out of fridge magnets that he has the vocabulary and the ability to string a decent sentence together.  He simply chooses not to talk. I don’t think he has anything against it, he just doesn’t see the point of it. He doesn’t see speech as a social communication tool, he sees it as a functional tool to be used only when he wants something and is not able to get it himself. This is why, when George answers a question so naturally and spontaneously instead of simply giving me a blank gaze and going on his way, it is a big deal. We are starting to see these little glimpses into a world of language for George, and it never fails to lift our spirits.

We had one of those glimpses about a week ago, when I was in the house doing the never-diminishing pile of laundry (I have come to the conclusion that clothes in laundry baskets actually reproduce) and George was playing in the sprinkler in the back yard. All of a sudden I heard him cry out in what sounded like pain. With James on my heels, I went out to see what was going on, and there he was, sitting on one of the patio chairs clutching his foot.  I asked him what was wrong, and he looked me right in the eye and said, “I need a Band-Aid”.  James, bless his little heart, immediately said, “I’ll get them!” and he hotfooted it into the house. While James was inside, I coaxed George into showing me his big toe, which had a cut on it from a thorn on a weed.

Now, previously, George would have simply freaked out.  The sight of blood, even a little bit of it, scares him a lot, to the point where he can barely function. But this time, he had presence of mind to hold it together for long enough to identify and label exactly what was needed. Once he had communicated it to me, he allowed himself to fall apart a little. He was visibly relieved when James came flying out of the house with the Band-Aids, and once the wound had been covered up, he calmed down completely.

I immediately went through the sequence of events with him. George got hurt. George knew he needed a Band-Aid. George asked for a Band-Aid. George got a Band-Aid, and now George is OK. That simple reinforcement was intended to cement in his mind that when he speaks, things happen that relate directly to what he is saying.

Now, if only that were the case when I try talking to my husband while he is channel-surfing…