“THAT BOY HAS A DUMDUM!  HE’S A VERY BIG BOY TO HAVE A DUMDUM!!”

The young boy trailing after his mother in the grocery store stared at Adam, pointed at him and stared.  I don’t know if his mother said anything to him, or encouraged him to stop, she may have done but they disappeared down another aisle in the shop, with her son still shouting about Adam’s “dumdum”.

The young boy was seeing me pushing Adam through the grocery store in his wheelchair as Adam cried and screamed for a toy that he wanted.  In an effort to help him calm down, and as is not unusual for Adam, he had his “dumbles” or pacifier in his mouth.  Yes, he does indeed appear to be a very big boy to have a pacifier in his mouth, this is true.

“WHY IS THAT BOY ON THE FLOOR?!”  

A child stared at Adam for a while and then turned to his parents, clearly trying to work out why my son was spread-eagled on the ground, digging rubbish out of the cracks in between the paving stones, neither looking at nor listening to me as we waited our turn for a ride on the miniature railway that ran through the park.  The child couldn’t have known that Adam has no understanding of what it means to wait in a queue, or indeed why he should.  He wants to go on the train, the train is running, why can’t he go on the train right now?  What is  a queue when you cannot even understand the concept of time, when there is no yesterday and no tomorrow, no such thing as five minutes from now or five minutes ago: there is only the present.

“IS THAT KID A DOG TO BE ON A LEAD?!”  

The adult muttered, perhaps less quietly than he thought, to his partner.  I don’t know if he was looking to raise a laugh, genuinely shocked at seeing Adam attached to me by his harness and reigns or simply being rude.  He chose not to ask me and at that point in the day, I was too tired and stressed to bother initiating a conversation so I ignored him.

These are just three examples of experiences I have had in the last fortnight as members of the public have encountered me, out doing the business of daily life, with my son.  I could list thousands more from the days, weeks and months prior to that.

Sometimes, people approach me with genuine curiosity or a desire to understand, particularly when they ask me why my son is behaving in a challenging way around other children.  Many, on hearing that he has multiple disabilities including autism, will either apologise and say they hadn’t realised, or mutter somewhat awkwardly as they back away.  Some will tell me that I need to control my son anyway and at these times, I’m very tempted to laugh bitterly and ask if they have any advice or wisdom to offer me.  I usually manage to restrain myself but always at an emotional cost.

When asked a genuine question of, “why is this happening?  why is your son behaving this way?” and when this is clearly framed in a desire to understand, I will explain the nature of Adam’s disabilities, I will apologise for any challenging behaviour that may have affected their child and where necessary, I will remove him from the situation. I recognise that this is my responsibility as Adam’s mother.

On the other hand, when harsh or derogatory comments are said either to me, to Adam or simply in our general vicinity, I will sometimes confront the person – if they are an adult, I will be quite blunt.  If they are a child, I will be far more gentle, knowing this is an opportunity to educate the child about living with difference.  Sometimes, I will hand the person a wallet sized business card provided by the National Autism Society which explains that this person has autism and may behave in a way that is different to others of their expected age or physical size.  It’s a small way of educating without always having to endure the stress of engaging, particularly when all of my focus and energy is on helping Adam to get through another day.

But my point, and the reason for this post is this:  The older Adam becomes and physically bigger he grows (he is now the approximate physical size of an average 12 year old), the more apparent it has become that he is different to other children of his age:

–  It may be the fact that he often uses a wheelchair when he is unable or unwilling to walk and there is somewhere we simply have to go.

– It may be the fact that he still uses his dumbles (or pacifier) something that many would only expect to see a baby or toddler using.  This is his version of the chewy stick used by many people with autism, and provides both comfort and sensory stimulation to help him manage the overwhelming stresses of a world that he does not understand and cannot cope with.

– It may be the fact that, on days when he is willing to walk, he wears his harness and reigns and remains attached to a belt around the waist of whichever parent or adult carer who is responsible for him.  (Available at www.childharness.ca) This harness gives Adam the freedom to walk and exercise, but prevents him from fleeing, which he is more than capable of doing in the blink of an eye and based on his complete lack of any sense of safety or danger, it prevents him from running into traffic, among other benefits.

– It may be the fact that, when Adam is finding something difficult, he will behave in a way that others might expect of a much younger child.  He may be having a tantrum or meltdown, be spreadeagled on the ground, screaming, hitting, slapping, biting or kicking the parent with him.  This sort of behaviour always attracts horrified looks from others, particularly when they see me calmly speaking and signing to tell him the violence is unacceptable, but when it is clear that I’m not particularly surprised by it.

– It may be Adam’s mumbled speech and Makaton sign language as he does his level best to communicate with me what he wants or needs.

– It might be as you hear him shouting his own name, in a very stressed out and upset voice when he is asked to do something that he does not want to do or finds difficult to do.

It may be a thousand and one other things that mark my son out as different.

Different from what others expect of a child his age

Different from other children around him

Different in the way we deal with or respond to him

Just different.


But here’s the thing:  different doesn’t need to attract stares.  Different doesn’t need to attract rude comments.  Different doesn’t need to attract judgemental stares.  Different doesn’t even need to result in “SSSSHHHHHH!!!!” from other parents to their own children, different could be an opportunity to teach, to explain, to ask, even to offer to help.

The simple reality is that when you see me, and my son, out in public, you will increasingly see someone who looks, and behaves, in a way that appears different.  But you know what?  We have a right to be here too – here in the park, here in the shop, here in the streets.  We have the right to go about our day, the best way we know how.  Adam has the right to play, in public, just like other children – even if he does do so in a way that is different.


My son finds the world around him to be very confusing, often nearly impossible to understand or cope with, but he’s doing the best he can.  And so am I.

So when you see us in the shop, in the park, in the street, and when you have the choice to stare or not to stare, to point and make comments or to heap judgement on us because of the difference that you perceive….

Please.  Stop.

Just for a moment consider this:  we are stared at all day long, every day.  We hear comments like the ones above multiple times a week, sometimes multiple times a day.  Day in, day out; week in, week out.

Please, give a moments thought to how hard it is to be the object of stares, comments, judgement…and let us be.

If you have a genuine question, if you would like to understand what you see then feel free to ask me, I don’t mind explaining and educating.  If your children make loud comments, as children will, then take this as an opportunity to explain that some children are different, some children have disabilities, additional or special needs, but that’s ok, let’s not point and stare, let’s remember to be kind.  In other words, teach them, don’t just shush them.

But otherwise, when you meet us, please remember the adage: