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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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Out Of The Wasteland

Once upon a time, life was normal. I was a regular young woman with regular ambitions. I had a few friends, and although I was never a party-animal, I had a reasonable social life. I kind-of-but-not-really knew what I wanted to do with my future. Nothing was cast in concrete, but I did have something loosely resembling a plan.

One day, all of that fell apart. The events that led to the undoing of my life as I then knew it are not important. Let’s just say that things changed. I went through some experiences that completely changed the direction of my life. Although the events themselves were not always positive, they did ultimately lead me down a path to becoming a stronger, more resilient person than I might otherwise have been.

These events did, however, leave me emotionally raw. I ended up with a propensity to depression that has plagued me several times over the years. Sometimes the depression hits abruptly, as if someone has thrown a switch in my head. Sometimes it creeps up so gradually that I don’t even notice it until I wake up one morning to realize that it’s there.

The depression is always bleak and frightening. When it’s there, I feel as if I am trapped by myself in an emotional wasteland. I have this sense of having to travel over inhospitable terrain where no-one is able to reach me. Outwardly, I go through the motions of existence. I get up and go to work, I parent my children, I keep in touch with people enough to avoid letting on that something is wrong. But on the inside, I am barely making it from one day to the next.

In the end, though, I have a natural optimism that gets me through. Even when I am in the midst of my darkest hours, I operate under the belief that no matter how bad things might be, they have the potential to get better. And somehow – after a few days, a few weeks or a few months – I emerge from my emotional wasteland. I start to feel the sunshine on my face again. I notice the colours around me, and I hear the laughter of my children.

This week’s Indie Ink Challenge came from Sir, who gave me this prompt: Write about the character trait of your that’s the most frightening.
I challenged  Michael Webb with the prompt:You are walking in the forest and you trip over a wooden box. You open the box and find…

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Empathetically speaking

Two years ago, while I was home alone with the kids, I sliced my hand open on a broken glass.  I called my husband to take me to the hospital to get stitched up, and enlisted the babysitting services of my mother-in-law. As I sat with a bloody dishcloth wrapped around my hand, waiting for said husband and mother-in-law to show up, the kids stood there gawking at me.  To put it more accurately, James stood there gawking at me.  Then only two years old, he hadn’t yet grown a sense of empathy.  He was intensely curious about why Mommy was clutching her hand and making funny noises. George just laughed.  I guess the sight of me sitting there with a white face and straggly, witchy hair, dripping blood all over my clothes, could be seen as amusing, but at the time I was too focused on whether my hand was still attached to appreciate the humour of the situation.

That George’s reaction was so at odds with the situation is not surprising.  Lack of empathy is one of the hallmarks of autism. When James is hurt or upset, George will stand there laughing at him, much to poor James’ distress.  He has no way of understanding that George is not trying to be mean.  It’s not a case of George deliberately laughing at someone else’s pain. He simply doesn’t have the social cues to know when someone else is actually in distress.  The rest of us know that when someone cries, they’re sad, or when they say “ouch”, they’re hurt. People with autism have difficulty with this.

George has discovered a series of Youtube videos that fascinates him no end.  The videos feature an orange talking to other fruits on the kitchen counter.  The orange is incredibly annoying and makes all kinds of jokes at the expense of whichever fruit is unfortunately enough to be engaged in a conversation with it.  The videos always end by the orange saying something like “knife”, and then watching in horror as the other fruit gets sliced up to the sound of its own screams.  The videos are quite funny in a disturbing, South Park kind of way, and absolutely not appropriate for children.  George finds them absolutely hilarious – or he did before I got wind of them and started an endless campaign to stop him from watching them.

Yesterday, George’s attempts to watch the annoying orange were blocked.  Every time he tried to access them, I would close the browser window and drag him away from the computer.  He was getting very upset and agitated – more so when I announced that his allotted time on the computer was up.  The legs were kicking, the hands were flapping, the little face was wearing an expression of utter distress.  Just as I thought we were getting to the point of a meltdown, he looked directly at me – a relatively rare event – and with supreme effort, he said, “Mad”.

I was bowled over. This was a new development – a milestone to be celebrated, despite George’s state of upset.  In most circumstances, George would have simply exploded in a fit of frustration.  But now, for the first time ever, he had used an emotive word to express how he was feeling.  Instantly I saw the possibilities: if he was able to identify and label his own emotions, surely the next step would be to identify what other people were feeling and react appropriately.

Somehow I was able to divert George’s attention from the violent fresh produce videos.  I allowed him a bit of extra time on the computer, and he clicked onto Youtube videos showing scenes from Toy Story.  There is one scene where Buzz Lightyear and Woody are weaving in and out of traffic as they try to catch up with the family’s moving van.  The other toys band together and try to help them, and during all of the excitement Mr. Potato Head topples over and some of his bits fall off.  At this point in the video, George tapped me on the shoulder to get my attention.  He pointed at the computer screen and said, “Ouch.  Hurt.”

Empathy!  George had just shown empathy!  Who cares that it wasn’t for a real person in an actual situation?  Who cares that he felt empathy for a toy in a fictional tale?  He saw a situation, assessed it correctly, and identified that Mr. Potato Head was hurting.  And he wasn’t even laughing – his face was all seriousness.

They say things happen in threes, and this turned out to be the case yesterday.  After the excitement of the dual milestones in the morning, there was an incident in the evening that capped off the day in the best possible way.  Both of the boys had spent the afternoon in the backyard, and they were absolutely filthy (word of advice: kids + sand + ice cream = not a good combination). Although tempted to simply hose them down in the backyard, I settled for giving them a bath.  George, as is his custom, grabbed his box of alphabetic fridge magnets and dumped them into the water.  He doesn’t play with them when he’s in the bath, he just likes to have them with him.  It makes bathtime a very interesting and noisy event.

When bathtime was over, I let the water out of the tub, and got the kids towelled off and in their jammies.  Then it was time to dry the alphabetic magnets.  If they are not shaken off and dried, George dumps wet letters on his bed and everything gets soaked.  So I was kneeling by the tub, drying off letters and putting them into the empty plastic fish tank that serves as their receptacle, and I dropped one.  I discovered that when those things are dropped in a bathtub, they bounce about a mile.  I was unceremoniously hit in the face by the letter “Q”.

George was standing by, patiently waiting for his letters.  Usually this incident would have brought forth peals of infectious giggles.  But there was silence for about ten seconds.  Then, George tentatively approached me, and shyly said, “Mommy?” I said, “Yes?”, and he said, “Are you OK?”

Not only was this such a wonderful demonstration of empathy, it was the most natural spontaneous exchange I have ever had with George.  It was an exchange that was appropriate to the situation, one that he initiated himself with no prompting.  It was a genuine moment of connection, one that will be with me for a long time.