post

Autism Acceptance Does Not Mean Entitlement

 

Since my son George was diagnosed with autism five years ago, I have learned – to some extent, at least – how to field the rude comments of strangers and the blatant stares of their children. Through my writing and through daily interactions, I do what I can to educate and inform, to discourage people from discriminating against my child on the grounds that he is “different”. I strive for awareness and acceptance, and I work towards a world in which everyone accepts George for the wonderful, albeit a bit quirky, person that he is.

In this quest I am part of a not-so-secret society of autism parents who have a common goal. We post and share autism awareness messages on our Facebook walls. We circulate articles about what to say and what not to say to an autism parent, and we brainstorm ways to make things easier for our children. In all of this, our message to the world is this: Accept our children, include  them to the extent to which they are capable, and discover what wonderful people they are.

As passionate as I am about this cause, I do believe that if we’re not careful, we can take it too far. We can make the mistake of expecting the world to bend to our children no matter what, without making any effort to equip our children to live in the world.

During my afternoon commute from work, I regularly encounter a blind woman who has a service dog. When we get off the subway, we go to the same bus bay, although she doesn’t take the same bus as me. She waits patiently for her bus, politely asking people to let her know when her bus has arrived. She is so nice and charming, and people practically climb out of their own skins in their eagerness to assist her.

In contrast, there is a man during my morning commute on the subway who is confined to a wheelchair. He is rude and aggressive. He seems to be completely OK with literally pushing people out of the way in his efforts to be first onto the train when it arrives, and he acts as if he can behave as badly as he likes because he is disabled. People are not that inclined to help him and feed his sense of entitlement.

When George has meltdowns in public, there is often very little I can do about it, but that doesn’t stop me from trying. As I try to engage strategies to help him, I offer explanations of autism to anyone who might be nearby. Am I obligated to explain my son’s behaviour? Maybe not. But I do recognize that my son’s behaviour at those times can be disruptive and a little frightening to the people around us who cannot be expected to magically know that he has a invisible disability.

In the vast majority of cases, my explanations are met with smiles and nods of understanding. On the odd occasion, I have even received offers of help. Yes, there are always the people who tell me that I shouldn’t have my child out in public if he cannot control himself, or that my bad parenting is to blame, but there’s very little one can do about people with that kind of attitude.

The point is that the road to acceptance is a two-way street, with some effort required from both sides. It shouldn’t be all up to other people, who in many cases may not know how they’re supposed to act around someone with autism. The individual with autism (depending on the level of functioning) and his or her family should do their part to make things easier too.

When I was on the subway to work one morning, a girl of eleven or twelve boarded the train with her parents. With the sense that autism parents develop as an instinct, I knew that this girl had autism. She clearly had communication deficits, but she appeared to have a reasonable level of functioning in other ways. Since this was during the morning commute, there was standing room only on the train.

The girl lost it. Over and over, with increasing intensity, she screamed, “I want to sit down.”

Bear in mind that although I knew the girl had autism, in all likelihood the other passengers didn’t. Why would they? Autism is not a visible disability. To most of the people on the train, that girl was simply a brat acting out. Her parents did not offer any explanations, nor did they make any effort to stop the screaming or help their daughter.

As the screaming escalated to an ear-splitting “I! WANT! TO! SIT! DOWN!” a woman close to where I was standing gave up her seat to the girl, who instantly calmed down. No-one thanked the woman who had given up her seat: not the girl, and not her parents. The woman, quite justifiably, was annoyed. She said something to the girl’s mother about manners, and the girl’s mother made some obscure comeback about a commuter’s responsibility to give up their seat to people with disabilities. The woman shook her head in bafflement and moved towards the opposite end of the carriage.

I didn’t mind that the girl had started melting down over the lack of seats. People with autism do not have control over what triggers them.

However, I do mind that her parents expected everyone else to accommodate her without offering an explanation, and I mind even more that they allowed the situation to escalate without trying to help her. I believe that in their lack of action, they did a great disservice to the autism community.

The next time any of those commuters encounters a child having a meltdown in a public place, how understanding are they likely to be? Does this kind of thing not reinforce all of the negative stereotypes about autism that we are trying so hard to beat?

We (autism parents) spend a lot of time talking about how we wish people would accept our kids. But we cannot really expect someone to accept something when they don’t even realize there’s something to accept.

Is it acceptable for people to be rude and discriminatory towards individuals with autism? Absolutely not. That doesn’t mean, however, that everyone has an automatic obligation to cater to us and our children, no matter what, without a little bit of effort from our side.

We have to meet the world halfway on this one. Working with society, not against it, is ultimately what will build awareness, acceptance and inclusion.

(Photo credit: Kirsten Doyle)

post

Sticks And Stones And Words That Hurt

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Special needs parents come with all kinds of super-powers, one of them being the ability to grow a thick skin. This is a necessary part of survival: without it, we would not be able to withstand the stares from strangers during public meltdowns, the judgmental comments that are designed to make us feel like bad parents, and the mothers who steer their children away from our kids in the park, as if autism were contagious.

These things never really stop hurting. They never fail to make our hearts ache for our beautiful children who through no fault of their own, are targets of ostracism and discrimination. As we grow into our roles as special needs parents, though, we learn coping skills. We come up with ways to shield our children from the hurt, and to let the strangers know that our kids have a place in this world, differences and all.

We learn how to accept that the blatant looks and rude comments are not a reflection on us as parents. They are a reflection of the ignorance and prejudice in other people.

But.

No matter where we are in our special needs parenting journey, nothing can prepare us for the first time someone maliciously refers to our children as “retarded”.

Although this word was originally used in a medical sense, it is now generally regarded as a derogatory term, especially when the intent is clearly to hurt either the child or the parents. As conventional wisdom states, “It’s not what you say, it’s how you say it.”

Today marks the fifth anniversary of my son George’s autism diagnosis. I guess it is a cause for celebration: not only have we survived for this long, we have seen great strides along the way.

It is also the first – and hopefully only – day on which someone referred to George as our “retarded son”. It happened in the early hours of the morning during a telephone argument between my husband and someone else. There is no doubt that the words were spoken with malicious intent.

George was asleep, so he was spared the pain of hearing himself referred to in this way. The hurt behind the words had to go somewhere, though, and it slammed into me, almost leaving me breathless, and then settled over my shoulders like a heavy cloak.

Several hours later, I am left with a knot in the pit of my stomach that won’t go away, and unshed tears that I am trying with all my might to contain.

As I try to prepare my son for life in the big wide world, I worry about what the big wide world is going to throw at him. Will it be a place of opportunity for him, or will it be a minefield of insults and discrimination?

Do I try to shield him from the hurt, or do I let some of it get through to him so he can learn how to protect himself?

How do I ensure that my son will be OK, that he will be happy and feel safe, in the days when I am no longer here?

post

Colouring 9/11?

When I was a child, I liked colouring books as much as the next kid. Or at least, I liked them as much as the next kid who was as artistically challenged as I was. I was never one to stay inside the lines, and have a vague memory of my Kindergarten teacher yelling at me for “scribbling instead of colouring” a picture of a kite.

The pictures featured in my childhood colouring books were pretty much what you would expect. Mickey Mouse. Donald Duck. Puppies chasing giant beach balls. Little kids riding tricycles. There was certainly never anything violent, because who would expose a six-year-old to violence through such an innocent medium? I think the only picture that suggested physical harm was of Bugs Bunny falling off a cliff. But even then, everyone knew that Bugs Bunny wouldn’t actually die, or even be hurt. He would merely create a bunny-shaped hole in the ground, from which he would emerge unharmed and carry on with whatever he had been doing.

I was never given a colouring book that depicted, say, scenes from World War II or the arrest of Nelson Mandela. I never coloured in pictures of tragedy or violence. The same goes for my kids. Their colouring books show scenes from The Backyardigans or Dora The Explorer. Nothing about war, death or disaster. Even if I saw that kind of material on the shelves, I would not get it. I already have enough trouble with the influences of TV and the Internet.

It would seem, though, that not all parents think the same way I do. According to today’s issue of The Metro, ten thousand copies of a 9/11 colouring book have been sold. Across the United States, ten thousand kids are colouring in pictures of the burning towers and the shooting of Osama bin Laden. The publishers of the book, which is at least partially aimed at a demographic that wasn’t even alive at the time of the attacks, defend the book, saying that it simply tells the story of the planning, execution and aftermath of the attacks.

I am all for freedom of information, and I have already learned, after just eight years of parenting, that it is futile to try and shelter kids from the darker side of life.

I have to say, though, that this book concerns me. When the time comes for me to educate my child about 9/11, I do not believe a colouring book will be the means to do it.  Particularly not a book that includes statements designed to encourage our kids to discriminate against others.

“These attacks will change the way America deals with and views Islamic and Muslim people around the world.”

I cannot possibly support a book that sends the message that it is OK to treat any group of people differently based on their race and religion. Yes, I get that the people responsible for 9/11 were bad and evil. I have no argument with that. But a statement like that suggests that our kids should treat the little Muslim kid in their class differently to the way they treat everyone else.

Parents, would you buy this colouring book for your kids? Do you believe it is a valid educational tool, or is it just another avenue for the promotion of stereotypes?

(Photo credit: http://www.flickr.com/photos/wwworks/417511823. This picture has a creative commons attribution license.)