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

March 5, 2016 By

autism

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.

Filed Under: autism, Children, Developmental Delay, Disability, Special Needs Tagged With: , , , , , , , , ,
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5 Myths About Autism That Really Have To Go

May 27, 2014 By

 

Sharing a laugh with George

Sharing a laugh with George

1. People with autism are violent

Whenever there is a mass shooting, at least one media outlet makes a point of mentioning that the perpetrator “was probably autistic” or “was suspected of having Aspergers”. This kind of reporting is irresponsible, groundless and discriminatory. Yes, it is true that some people with autism have violent tendencies, but that is also true of the general population. Some black people have violent tendencies, but we don’t go around saying that the perpetrators of crimes “were probably black”, because that would be inexcusably racist. In any case, numerous statistics have shown that people with autism and other developmental disabilities are more likely to be victims of crime than perpetrators. I could go on about this all day, but instead I will point you to this excellent post written by my friend Sophie Walker.

2. People with autism have to follow special diets

Autism parents are always being told to change their kids’ diets. We are bombarded with messages telling us that everything we buy at the grocery store is aggravating the autism and poisoning our families. We are pushed towards the gluten-free, lactose-free, sugar-free, everything-free versions of foods, and there are two problems with this. First, in many cases it is not necessary. Second, these special diets cost an absolute fortune. Many autism families can barely make ends meet as it is – it is wrong to expect them to stretch themselves even further by spending money on expensive foods that in most cases, won’t make a difference. The proper way to do it is to have the child properly tested by a qualified professional, and then make any dietary changes that are needed.

3. People with autism are not capable of empathy

Last weekend, I was at a park with my kids. James was playing on the slides and George was sitting on the outskirts of the play area, contentedly picking up handfuls of sand and letting it slip through his fingers. All of a sudden, I heard a cry of pain, and I looked up to see that a little girl of nine or ten had fallen off the swing. She was lying on the sand crying, and the swing was moving back and forth like a pendulum above her head. Without hesitation, George leapt up and ran to the little girl. He stopped the swing from moving, and guided her out from underneath it. Then he simply stood there beside her until her mother reached her. The moral of this story is: don’t tell me that my child with autism is not capable of empathy. Like many kids with autism, he is capable of empathy, but he doesn’t always know how to express it.

4. People with autism are geniuses

Honestly, Rain Man has a lot to answer for. Because of that movie, people keep asking me if George can instantly do large math sums in his head, or identify with a single glance how many Cheerios have fallen out of a box. The answer is no. He can’t. He’s an intelligent child with problem-solving skills that will stand him in good stead through life, but I have to be realistic. The kid isn’t a genius, nor would I expect him to be. True savants, like artist Stephen Wiltshire, or musician Derek Paravicini, are rare.

5. People with autism don’t understand what’s going on around them

Sometimes I find myself in conversations with people who are asking me about autism, talking about George’s future and making comments on his limitations. I am always happy to have these conversations, but not necessarily in front of George. He may have autism, but he has ears that work, and he understands more than his limited speech lets on. On a related note, it drives me crazy when people ask things like, “Would he like a cup of juice?” when he’s standing right there. If you want to know what George would like to eat and drink, ask him, not me. He often needs help to answer questions, but he should at least be given the opportunity to try. How is he going to learn to have a conversation if people keep talking about him and not to him?

This is an original post by Kirsten Doyle. Photo credit to the author.

Filed Under: autism, Developmental Delay, Disability, Myths Tagged With: , , , , , , , ,
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Five Early Signs of Autism: My Family’s Experience

November 8, 2012 By

My boy at the Autism Centre family day

When I tell people that my son has autism, the first question many of them ask is, “How did you know there was something wrong? What made you get him assessed?” Many people asking this question are having concerns about their own children, weighing up the idea of taking them to a pediatrician.

It would be so easy to point worried parents to websites listing early childhood development checklists and signs of autism, but that would only help a small number of people. The trouble with autism is that it is so individualised. It manifests in so many different ways. You get the kids who can’t string two words together but can rebuild a computer in two minutes flat. And you get the kids who are fully verbal but never learn to look both ways before crossing the street.

Here, I share my experiences with my son. Some parents will read these and nod along knowingly, identifying with every point. Others will wear a perplexed expression and say, “My child doesn’t do that.”

So, how did I know something was wrong?

1. Lack of speech or any other meaningful communication. By the time he was two, George was not talking. He had about thirty words in his vocabulary, but he was using fewer than ten of them in the right context. They were used as single words only, always for the purposes of requesting. Juice. Milk. Chee’s (Cheerios). He also did not have any kind of repertoire of meaningful gestures. He couldn’t point, and if he wanted something he did not know the word for, he would take my hand and move it in direction of the object he wanted.

2. No desire to play with other kids. When other kids his age were starting to play collaboratively with each other, George was still in parallel play mode. He did not object to the presence of other kids as long as he had the space to sit on his own and do his own thing. He did not see other people as potential playmates, but as functional beings: if he needed help to manipulate an object or separate stubborn Lego blocks, he would seek out an adult and shove the object into their hands. That was the extent of his interaction.

3. Not using toys for their intended purpose. Unlike some parents who say that their kids “became” autistic at a certain age, or after a certain event, I had a feeling fairly early on that there was something not quite right with George. One day, when he was at the age when babies are just learning to sit unsupported, I put him in the middle of the floor and propped him up with a nursing pillow. I surrounded him with all kinds of toys, just to see if he would respond to anything. There were stuffed animals, Lego’s of various sizes, fabric books, and a variety of planes, trains and automobiles. There was all kinds of stuff. He didn’t care for any of it. His attention wasn’t caught by the brightly coloured balls, and he didn’t make any attempt to grab at or swat any of the dangly things I tried to entice him with. He pushed a big red button on a train, and then grabbed a piece of string that was caught on my shirt and spent the next half-hour staring at it from different angles.

4. Prone to sensory overload. As a toddler, George hated going to the store. He would tolerate the grocery store for short amounts of time, but by the time I was at the checkout, he was usually having a meltdown of epic proportions. In those days before the autism diagnosis entered my orbit, I couldn’t understand what he was making such a fuss about. The only way for me to stop those meltdowns was by taking him out of the store. Looking back, I now realize that he was simply overwhelmed by everything that goes on in a store: fluorescent lights, lots of people, lots of displays, lots of sounds. Wal-Mart in particular set him off. Something about the checkout area sent him into a state of absolute panic.

5. Instinct. Ahhhh, there’s nothing quite like a mother’s gut feel. I have no idea if there is any science behind it, but mothers have this uncanny ability to just know there is something wrong with their child even though all looks fine and dandy to the outside world. This is why I always tell mothers that if they have a feeling something might be amiss with their child’s developmental progress, they should park themselves in their doctor’s office and insist on a referral for an assessment. There are doctors who will tell you to wait, that the range of development is broad, that boys reach milestones later than girls. Don’t listen to that guff. Don’t take no for answer. If you have to tell your doctor that you will sit in his office gathering dust until he gives you a referral, so be it. Listen to your instinct and don’t let anyone talk you into acting against it. I made that mistake and to this day, I bitterly regret the year of early intervention that my son missed as a result.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Developmental Delay, Early signs Tagged With: , , , , , , , , ,
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Autism Diagnosis: Blessing, Curse, or Both?

January 12, 2012 By

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

Filed Under: autism, Autism Diagnosis, Autism Friendships, Autism Services, Developmental Delay, Doctor, Learning Disability, Special Needs, Support Groups Tagged With: , , , , , ,
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Why Autism?

July 19, 2011 By

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Causes of Autism, Childhood, Developmental Delay, Environment, Genetics, Learning Disability, Social Anxiety, Speech Delay, Vaccines Tagged With: , , , , , , , , , , , , , ,