Autism Is No Excuse


A few weeks ago, there was a story in our local community newspaper about a boy with autism who had been asked to leave a restaurant, along with his mother. When I first read the headline – Autistic boy booted from restaurant – I felt outrage on behalf of the mother and child. But when I read the story, I found my sympathies shifting to the restaurant manager.

What happened was that a mother and her son with autism were eating at a fast food restaurant, and the child started melting down over something. He was shrieking and banging on the table, and at one point he grabbed a fistful of fries and threw them. The mother made little effort to soothe the child, saying, “He has autism. There’s nothing I can do.” When the manager politely asked her to leave, she complied, but in the aftermath she made a big deal of the fact that her son had been discriminated against because of his autism. The manager made a big deal of the fact that the child had been acting in a manner that was disruptive to other diners.

Anyone who’s been reading this blog for any length of time will know that I’ve dealt with my share of autism meltdowns. I’ve been that mother whose child kicks and screams in public places. I’ve been on the receiving end of the stares and comments, and on two occasions, I have had to offer to pay grocery stores for goods that have been damaged as a result of my son’s outbursts.

But my son’s autism does not entitle him to create a situation that disrupts the activities or enjoyment of other people. When he acts out in public, it’s for one of two reasons: either he is having an autism meltdown, or he’s acting like typical bratty kid. If he’s having an autism meltdown, it’s up to me to try and soothe him, either by removing him from the situation or by finding a way to divert his attention to something else. If he’s acting like a typical bratty kid, it’s up to me to discipline him and make it clear to him that bad behaviour is not acceptable.

Either way, it’s never OK for me to use my child’s disability as an excuse to let him behave in a way that impacts other people. He may have autism, but he still has to be held to a certain standard of behaviour, just like the rest of us. That restaurant manager was not reacting to the fact that the boy had autism. He was reacting to the child’s disruptive actions and the mother’s failure to do anything.

There was a story in the news a few years back about a child with autism who was removed from a plane under similar circumstances. He was lying in the aisle having a meltdown while the flight attendants and other passengers were trying to step over and around him. All attempts to get him settled in his seat were failing, and eventually the boy and his father were taken off the plane. My Facebook feed erupted in outrage as people accused the airline of discriminating against the boy with autism.

But really, what was the airline supposed to do? Delay the flight until the meltdown was over, which could have taken hours? Take off with a boy kicking and screaming in the aisle? Allow the behaviour to continue without regard for the safety of the flight attendants or passengers? My view was very unpopular, but I believe that the airline took the only action they really could. They would have done what they did whether the child had autism or not. In fact, from what I could glean from the story, the airline actually delayed their decision to remove the child because they had been made aware of his autism.

This subject reminds me of a conversation I had many years ago, when I was still in South Africa. I was talking to a co-worker about a high-profile murder case in which the accused had been convicted and sentenced to life in prison. Evidence against this individual had been overwhelming, in terms of forensics and witness accounts. My co-worker, a black man, told me that this man had been sent to prison just because he was black. I disagreed.

“No,” I said. “He’s been sent to prison because he killed four people.”

My co-worker did not dispute the fact that the man was guilty, but he was stuck on this idea that the outcome of the trial was symptomatic of racial discrimination. But what was the alternative? Should the judge have let the criminal walk free just to prove that he – the judge – wasn’t a racist?

Should flight attendants, restaurant managers and other people endure a child screaming and throwing things in public just to prove that they don’t discriminate against people with autism?

Discrimination in any way, shape or form is wrong. I do not condone racism, gender discrimination, homophobia or any kind of bias against people with disabilities. I am big on human rights and equality. I believe that accommodations should be made for members of minorities and people with disabilities where possible – like wheelchair accessible buildings, government services in multiple languages and alternative screening processes for job applicants with autism. But I also believe that everyone has a responsibility to be considerate to those around them.

This is an original post by Kirsten Doyle. Photo credit: Dmitry Kalinin. This picture has a creative commons attribution license.


Eight Car-Travel Tips For Autism Families

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I am very fortunate to have a child with autism who is a good traveler. We haven’t braved planes with him yet, but he does very well on public transportation and in the car. Even so, we have to put careful planning into lengthy drives to ensure that he stays safe and happy, and that the rest of the family survives with all their wits intact.

1. Make sure the child locks are engaged. Most neurotypical kids are aware of the dangers of opening the car door while the car is in motion. A kid with autism might tug on the door handle just to see what happens, without regard for the possible consequences. If you don’t know how to set the child locks, read the manual. If you’re in the market for a new car, check it out for safety features with your special needs child in mind.

2. Kids who have trouble with car travel should be eased into it gradually. If your child cannot get as far as the grocery store without melting down, don’t plan a road trip to the other end of the country. Experiment with a few trips of 30 minutes or so. During those trips, try different activities and snacks, until you figure out what works.

3. If you’re going on a long trip, plan your route to include stops at parks or play areas. We all benefit from getting out of the car and moving around from time to time, and it’s good for all kids to expend their energy. For kids with autism, there is an added consideration: those who are sensory-seeking may have a particularly difficult time sitting still in a car, so those activity breaks are often a necessity for them.

4. Some kids with autism cannot tolerate bright light. You might be able to make the trip a lot easier by investing in a shade for the window beside your child. The shades are easily applied with suction cups, and you might be able to leave it to your child to decide whether they are open or closed.

5. When deciding what to bring with you, stick with what you know your child likes. Buying a new toy especially for the trip may backfire. If your child stims by repeatedly stacking eight identical pieces of Lego, bring them along. If he reads the same book over and over, don’t leave that book at home. New stuff might create anxiety and frustration, whereas comfort can be found in the familiar items.

6. If you are planning to hit the road at night with the hope that your child will sleep, follow the usual bedtime routine immediately before you leave. It may still be a little disruptive, but your child will at least be geared for the idea of going to sleep. You may even get away with putting a smaller child to bed and then carrying him to the car once he’s gone to sleep.

7. Be prepared for the possibility of meltdowns. It can happen to the most accomplished of car travelers. If you use reinforcers (in our case, gummy bears), bring along a good supply. Think of your usual strategies for containing or diffusing meltdowns, and consider how you can modify them for use in a moving car (if you can stop, great – but you may not be able to pull over right away).

8. Don’t be 100% focused on the needs of your child with autism. The truth is that no matter how well prepared you are, unexpected things can happen. If you have taken the time to make sure everyone in the car has what they need for an enjoyable trip, the overall ambiance will be a lot more relaxed. That can make the world of difference to the child with autism, and to everybody else who is on the trip.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit to the author.



Brotherly Love

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Last week, George lost his footing while trying to climb a tree, and he had a nasty fall. There was no lasting damage, but there were some scary-looking cuts and scrapes. That night, George had a hard time sleeping, probably because he was aching all over and couldn’t find a comfortable position to lie in.

We decided to keep him home from school the next day. He was a little shaken and we felt that he needed time to recover, and a cut on his back was looking kind of angry. While James was puttering around getting ready for school, George was lying on the couch looking a little the worse for wear.

James, who had been present when George had fallen, was deeply concerned. He fussed around his brother, covering him with a blanket, making sure the TV was tuned to George’s favourite channel, and bringing him some of his Mr. Potato Heads to play with.

It was really very sweet, watching James take care of his brother with such obvious love and care. Being the sibling of a child with autism must be so hard at times, and I know that George sometimes drives James around the bend. But James’ compassion for George never wavers.

When we went to the grocery store yesterday, George started melting down. Although grocery store meltdowns are far less common than they used to be, they are harder to control. George is a tall-for-his-age nine-year old, and it’s not as easy to physically contain him as it was when he was, say, five. My husband and I were debating whether one of us would have to take him out of the store, but then James saved the day by letting George play with his Leap Pad.

This was just the distraction that George needed, and from that point he quite happily walked around the store with us while we got what we needed to get.

All James had to say about this was, “The only thing that makes me happy is if George is happy.”

And that, it would seem, is what brotherhood is all about.

(Photo credit: Kirsten Doyle)


Note To Self


I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 22 – The things we forget: Visit and make your own version of a short memo reminder. Where would you post it?

A few nights ago I was late getting home from work because of a delay on the subway. This meant that after a day that had already been long and frustrating, I had to compress the evening’s usual chores and and activities into a shorter amount of time. As soon as I got home, I started doing what I needed to do, without giving myself any time to unwind. I efficiently moved from task to task, supervising homework, getting the laundry on, preparing packed lunches for the following day, eating dinner that, thankfully, my husband had already made.

I was stressed about the time, trying to get everything done and still get to bed at a reasonable hour. When the kids were slow to put on their pyjamas, I was a little more brusque with them than I really needed to be. Later, after they were sleeping, I prepared the coffee machine for the morning, as I always do. While I was measuring out the coffee, I accidentally spilled a little bit of it on the kitchen counter.

And I totally lost it. That little bit of spilled coffee turned out to be the straw that broke the camel’s back on that particular day. I didn’t get mad and throw things, but I broke down crying. I sat down and put my head on my desk and just sobbed. For those few minutes that I lost control, the coffee represented the general disarray of my entire life.

When it was all over, I inevitably felt a little foolish. A meltdown over spilled coffee that took all of three seconds to clean up? What was that about?

The truth is that all of my concerns about that evening had been about inconsequential stuff. So what if I was half an hour late getting home? It wouldn’t have been the end of the world if the kids had been fifteen minutes late getting to bed. That load of laundry could have waited until the following day. I could have set up the coffee machine in the morning.

But instead, I allowed myself to get absolutely wound up over things that really didn’t matter. And when you consider all I have to deal with that does matter, that seems counter -productive. Very often I am so overwhelmed by my full-time-job-mom-of-two-with-special-needs-child existence that the slightest things can just feel like a major catastrophe to me.

Sometimes I need a reminder to pick my battles, and avoid getting stressed about things that, when it comes right down to it, have absolutely no bearing on the quality of my life. I need to learn how to let the little things go so I can devote more of my energy to the big things.

And I shouldn’t pet the sweaty stuff, because that’s just gross.

(Photo credit: Kirsten Doyle with a little help from


A World Of Anguish


The entire house seems to shake as my seven-year-old son screams and bangs his head on the hardwood floor. He raises his head to bang it again, but I reach him first. I have no idea what has triggered this meltdown, and right now, I don’t have the time to try and guess.

My son is long and lanky: he is far too big for me to carry, but I have to get him away from the hardwood. Yes, I know what the so-called experts keep saying. When a meltdown happens, you have to ignore it. Paying any attention to him while he’s melting down will reinforce the behaviour.

Yeah, well, while I’m ignoring the meltdown, my child could be giving himself a concussion. This frantic headbanging isn’t anything I haven’t already seen. There are so many dents in my drywall that the inside of my house looks like a giant golf ball.

I half-lift, half-drag my son into the carpeted living room. I grab cushions and blankets – anything soft that’s within my reach – and I pad our immediate surroundings to stop my boy from hurting himself. Using a technique borne of experience, I wrap my arms around him and use my body weight to keep him still, to keep him safe.

While all of this is happening, he is kicking and screaming. They are not screams of anger, but of frustration. They are the screams of a child who is locked inside his own head and cannot find the way out. He looks directly into my eyes, and his expression is one of desperation. I am reminded of a caged animal who wants nothing more than the ability to run free.

As I look at my beautiful child, as I see him in such anguish, I want to cry. I fight back the tears. I have to be strong right now. Later on, when this has passed, I will have my chance to cry.

In my mind, I start talking to Autism as if it were a real person and not merely the name of the condition affecting my son.

“Damn you, Autism. There are times when I don’t mind you so much. There are times when I am completely comfortable with your presence. Hell, sometimes I even like you. But at times like this, Autism, I hate you like you wouldn’t believe because of what you do to my child.”

My son and I lie there on the living floor for what seems like ages. Slowly, so slowly that it’s barely perceptible, the screaming becomes less intense. The weight of my body provides him with the physical pressure he needs to become grounded again. And eventually, the screams stop altogether and I can loosen my hold on him. We curl up on the couch together. The silence is punctuated by an occasional hic.

I look at my child’s angelic face and tenderly smooth my hand over his hair. His eyes are closed and I think he’s gone to sleep. But then he opens his eyes and a special look passes between us, a look that no-one in the world apart from the two of us would ever be able to interpret.

You know what it’s like, he says to me with his eyes. Sometimes you can see into my world.

Yes I can, my eyes say back to him. But it’s only because you trust me enough to let me in.

And secure in the knowledge that he is not alone, he falls asleep in my arms.

This week’s Indie Ink Challenge came from FlamingNyx, who gave me this prompt: Describe “that” look you got in a secret moment of knowing. That look that no-one in the world would understand and can only pass between you and “that” person. 
I challenged The Drama Mama with the prompt: Tell the story of a policeman who died in the line of duty, from the point of view of his eight-year-old child.


Autism Meltdowns: Six Strategies For Helping Siblings

It is a scenario that parents of children with autism are confronted with countless times: the child melts down for no apparent reason while his or her brother or sister stands by helplessly, not understanding what is going on. Autism meltdowns can be particularly bewildering for younger siblings who may not fully understand what autism is or why the meltdown is happening.

The strategies that I am describing today are based purely on my own experiences. I did not read them on the Internet or get them from any parenting books. I learned these in the best way possible: from the School of Hard Knocks.

1. When a child with autism starts having a meltdown, the primary concern should be for everyone’s physical safety. The child is going to lash out wildly, hitting or kicking whatever or whoever he comes into contact with. He may run around with no real direction and bang his head on objects or people. Children going through an autism meltdown seem to have superhuman strength, and there could be a real threat to siblings who are standing too close. Therefore it is imperative to ensure the safety of the siblings as early as possible in the incident. This can be accomplished by taking them to a different room and making sure they have enough toys or books to see them through for what could be a couple of hours.

2. Siblings should never be punished while a meltdown is happening. This may seem intuitive, but it can be really easy to fall into the trap of yelling at siblings who happen to get too close while the parent is trying to deal with the autistic child. We are, after all, only human. If a child wanders up during a critical moment, we can have a knee-jerk reaction to yell, “Get away!” or “Go to your room!”  Doing this may make the sibling feel that he is somehow responsible, and that is not a burden any child should carry. A better strategy would be to ask the child to leave the room, promising that you will go to them as soon as their brother or sister is OK.

3. Recognize that the siblings are not only bewildered and confused by what is happening, they are also in all probability deeply concerned about their brother or sister. In the scenario described above, where the sibling is getting too close, it may be helpful to verbally acknowledge this. Tell the sibling that you know how scary this is for them, that you know they are worried. This simple strategy will validate their feelings and give them permission to feel the way they feel, and it can go a long way to helping them weather the storm.

4. When the meltdown is over, take the time to explain to the siblings what just happened. Talk to them about autism and how children affected by it sometimes have difficulty processing emotions or sensory overload. It is fairly common for siblings to start apologizing in the aftermath, worrying that something they did caused the explosion. They have to be reassured that this was not their fault.

5. More often than not, the sibling is going to need some post-meltdown reassurance that their brother or sister is OK. Bear in mind that they have just been witnesses to an extremely intense melting pot of emotion. They may want to see or talk to their brother or sister. Exercise caution, because meltdowns that have passed can flare up again, but is important for you allow (but not force) interaction between your children.

6. Reserve some time to spend exclusively with your autistic child’s sibling. It can be tough, being brother or sister to a child with autism. There are many times when the needs of the typically developing children are sidelined because of the special needs of their sibling. Meltdowns definitely fall into this category. Because of the nature of these explosions, parents have no choice but to mostly ignore one child so they can focus on the safety of another. When the meltdown is over – be it immediately or later in the day – that time should be given back to the sibling without autism. Read to your child, watch his favourite DVD with him, let him choose a game to play, or simply spend time snuggling with him.

Managing meltdowns involves so much more than taking care of the child with autism. We have to consider our typically developing children as well. Even though they don’t have autism, they are still children, and they look to us to protect and reassure them. Using these strategies consistently can help them develop their coping skills and enhance their relationship with their autistic brother or sister.

Do you have any tips to add to my list? Please leave them in the comments!

(Photo credit: This picture has a creative commons attribution license.)


Autism Meltdown: Surviving The Storm

It all started when I turned on the light in the kitchen. My almost-eight-year-old son George sidled up to me and, as usual, said, “Turn off the light soon.”

George hates the overhead light in the kitchen, and whenever it is turned on, he glues himself to my side and repeatedly tells me to turn it off, like a stuck record. I am so used to this that I barely notice it anymore. I just carry on with whatever I need to do, which last night included unpacking and reloading the dishwasher.

Uh oh. The dishwasher. This is another source of extreme discomfort for George. He gets very anxious when it is open, and like a record stuck on a different track, he tells me over and over again to “put it back soon”.

This – the combination of the light and the dishwasher – was a precursor to the explosion that would happen later in the evening.

I was probably not helping, at least, not at that point. I was in an agitated state of mind, having just come home from a stressful workday. I was multitasking too much, juggling about six tasks simultaneously, and getting stressed because neither of the kids would eat their dinner. I was frazzled and fraught. There is no other way to put it.

The explosion gradually built up throughout the evening, and finally erupted when George turned on the kitchen tap and found the water hotter than he expected. He screamed in outrage and started running around in a panic. I caught him, and using an expertise borne of experience, I used my body to restrain him from thrashing around and hurting himself.

I determined that he was not burned or injured, and sat there wrapped around him while he screamed. And screamed and screamed.

It has been a while since George had a meltdown this bad, but I knew that there was not a thing I could do to diffuse it. This was going to last for as long as it lasted, and we were just going to have to ride it out. Fortunately, my husband was home, so I had someone to tag-team with. One of us would stay with George, while the other would comfort our younger son James, for whom these meltdowns can be mysterious and frightening. Every thirty minutes or so, we would switch kids. Anything else that either of us had planned for the evening was abandoned.

After two hours or so, George finally started winding down. My husband and I cautiously allowed ourselves to breathe. He went back to the work he had been doing on his computer, and I went into the kitchen and made a cup of tea. I got the kids into their pajamas and gave them their bedtime milk. Because they were both still unsettled, I allowed them to chill out on the couch for a while before going to bed.

The period of relative calm turned out to be the eye of the storm.

The dishwasher had been running in the background without anyone paying attention to it. George, with his super-sensitive ears, heard the quiet click that heralds the end of the dishwasher’s cycle, and just like that, he was off again. For another hour, this poor child was experiencing an emotional storm that I felt ill-equipped to help him weather.

The worst part of all this was not the screaming. It was not the panicked running around and frantic scrabbling with the dishwasher. The worst thing by far was the look in George’s eyes. He kept looking directly at me, trying desperately to communicate – something. If the eyes are indeed the window to the soul, then my son’s soul was frustrated, unspeakably sad, desperate – almost tortured. It broke my heart to see him that way, to see him in such obvious pain and to be unable to help him.

Much later, when everything was finally quiet and when the entire household (sans me) was asleep, the question of why kept running through my mind. What happened to trigger the worst meltdown we’ve seen in about a year? Could the light and the dishwasher have suddenly morphed from a source of anxiety to a source of full-on panic? Was the hot water just too much for him to handle? If I had not been stressed and agitated, would the situation have escalated to such an extreme degree? In an interesting theory offered by my mother – one that resonates with me – could yesterday’s earthquake have unsettled George and made him more susceptible to stress?

As with most things autism-related, there are no definitive answers. Every question just spawns more questions. All I can really do is go with my instincts and strive to be the best mom I can be.

(Photo credit: This picture has a creative commons attribution license.)