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


Challenges of Special Needs Parenting

This week, I am participating in the WEGO Health “Advocating for Another” carnival. Each day, there is a prompt that I answer in the form of a blog post. Although only George has the autism diagnosis, we also recognize the challenges faced by his little brother. All of my posts here this week are dedicated to him.

Today’s prompt: Challenge accepted! Parenting isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a parent.

Me and my boys, September 2010

“That must be so hard.”

That is a common response when people find out that my son has autism. And they are right. It is hard, but not necessarily in the ways one might expect. Because as parents, we all do what we have to do. We all want the same things for our children, whether they have special needs or not. We try to keep our children safe, and for me, that sometimes means physically restraining my son to stop him from banging his head on the hardwood floor. We try to make sure they are reaching whatever potential they are capable of, and for our family, that entails intensive behavioural intervention, speech therapy, individual education plans, and navigating the special education system.

These things are challenging, and at times, heartbreaking. But I am so busy just doing what needs to be done that I don’t really give a lot of thought to the hardship factor of it all. At the end of the day, the reward is far greater than the challenge. We get the smiles, the hugs, the occasional leaps of progress that make it all worthwhile.

As full of bravado as I might sound, though, I am only human, and there are things about this whole special needs parenting gig that I wish I could be better at.

Managing the sibling connection

I often worry that James got a rough deal, being the brother of a kid with autism. So many things happen that, if I were in James’ shoes, I would be downright mad about. James, for instance, gets more timeouts than George, not only because he is more aware of what his behaviour should be like, but because George doesn’t really get discipline. I can explain to James until I’m blue in the face that the best way to punish George for bad behaviour is to simply ignore it, but how can a six-year-old be expected to understand that?

Then there are the times when James has to patiently stand by waiting for attention while I am dealing with one of George’s meltdowns. Those meltdowns, which involve George screaming in frustration and trying to bang his head on things, must be so frightening for James to see and hear. And yet this little kid waits patiently for whatever he needs, be it a cup of milk, or the answer to a question, or simply a comforting hug.

I try to make it up to James in other ways. I try to talk to him about George’s autism and what it means. There is no doubt in my mind that James adores his brother, and for the most part he seems to be happy. But I cannot help wondering just how well I am doing this parenting thing. How good a job am I doing of balancing the oft-conflicting needs of my two boys?

Managing the marital connection

When George was first diagnosed with autism just over five years ago, my doctor gave me a startling statistic. About 80% of couples who have children with special needs or chronic illnesses break up. I think that is unspeakably sad. I mean, when someone’s life is turned upside down by the reality of there being something wrong with their child, a strong spousal partnership could bring such comfort and take away that feeling of being all alone. But instead of coming closer together, many couples are ripped apart by their grief.

My husband and I both went through a process of grieving when we first discovered that George had autism. We had put together a beautiful picture of what our family life was going to be like, and in one swoop that picture was destroyed. At the time, we had no way of knowing that we would ultimately build a new picture – one very different to the original, but no less beautiful. All we knew was that we were crushed under the weight of what was going on.

Things got rough for us, but we survived. Together. We have our moments where things aren’t so great, but in the end we are partners, and we are in this together.

It can be so hard, though, to find the time and energy for one another. We are both working so hard to create the best possible lives for our boys, that sometimes we drift a little. At those times, we have to make the effort to drift towards each other.

Managing my own needs

I don’t claim to be anything special. I’m just a regular mom who happens to have a child with autism. I have a full-time job a one-hour commute away from home, I help out with my husband’s business, and I raise my kids. I cook, I clean, and I do laundry. I make sure the bills get paid and I try to get to bed at a reasonable hour each night.

I stay sane by running, and by writing. Occasionally, I even write stuff that makes sense. I love to write because it gives me a voice. I love to run because it provides a physical release from the stress, and because it gives me time to myself, to clear my head.

Here’s the thing, though: I am only one person, and no matter how well I manage my time, there are only 24 hours in one day. And when I start running out of time to do everything that needs to be done, the first thing to go is the stuff that I do for myself. Gaps start to appear in my blog. I submit archive pieces to the ezine I write for. I curtail training runs, or even – Lord forbid – cut them out altogether.

It’s as if my lowest priority in my life is myself. And I wonder if that is OK. Could those bills not be paid tomorrow instead of today? Will the world end if the laundry doesn’t get done right away? Does it matter that, once in a while, I’m grabbing something convenient from the freezer just so I can spend time taking care of myself?

I don’t know the answers. But I do think I do a reasonable job as a parent, and I am having the time of my life seeing my kids grow up.

(Photo credit: Holly Bannerman)