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Autism Is No Excuse

August 11, 2014 By

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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.

Filed Under: autism, Behaviour, Discrimination, Expectations, Meltdown, Special Needs Tagged With: , , , , , , , , , ,
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Too Much Information?

November 4, 2012 By

Today’s prompt in the National Health Blog Post Month challenge invites participants to talk about disclosure. How do we decide what to share and what not to share in our posts?

This is a question I grapple with from time to time, as all bloggers should. As soon as you put any aspect of your life onto the Internet, you can say goodbye to privacy. Sometimes that really doesn’t matter. There’s no danger in me posting my race times and less-than-flattering photographs of myself in motion. Any Joe on the street can go online and look up my race times anyway. Since that information is publicly available, I may as well post it in my blog where I can brag about it a little.

I am equally open about my son’s autism and the challenges it presents to my family. This is where the question of disclosure becomes a little tricky, because I am being open about people other than myself. There are certain things that I will not discuss on the Internet, but in general I talk quite freely about the lives of my kids, and to a lesser extent, my husband. It is one thing for me to talk about myself, but my right to make that decision on behalf of my children is a bit of a gray area.

My blog serves multiple purposes. It’s a form of expression for my socially anxious, bad-at-verbal-conversation self. Writers as a breed tend to be a little neurotic and introverted, and I am no exception. This is how we communicate. Writing gives us a voice that we wouldn’t otherwise have.

Apart from fulfilling my own need for self-expression, my blog gives hope to other parents of special needs children who might be feeling a little lost and alone. From time to time, I get emails from readers telling me how my writing has made them feel less overwhelmed, and more able to cope. Those emails make everything truly worthwhile, because at the end of the day, what I want is to do my small part to make the world a better place for our kids, for the parents and siblings, for everybody.

At the same time, I hope to smash the stigmas surrounding autism, and the way I see it, the best way to do that is to be frank about it all. People are afraid of what they don’t understand, and in talking about autism, I hope to give it a human face, to give people the message that although there are little kids with autism, they are first and foremost little kids.

There are aspects of my kids’ lives that I will never talk about on my blog. My basic rule is this: if I cannot talk about it in public, I cannot talk about it on my blog. I agonize over many of my posts, weighing the benefits of sharing information against the risk of anyone getting hurt. I have written entire posts and then deleted them without publishing them.

It’s a delicate balancing act sometimes, and I find that as long as I listen to my gut instinct, it’s OK.

How do you decide what information to share on your blog? Have you ever shared something and later regretted it?

(Photo credit: John “Pathfinder” Lester. This picture has a creative commons attribution license.)

Filed Under: blogging, Disclosure, Internet, National Health Blog Post Month, Privacy, WEGO Health Tagged With: , , , , , , , ,
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Autism Acceptance Does Not Mean Entitlement

June 14, 2012 By

 

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)

Filed Under: Acceptance, autism, Discrimination, parenting, Society Tagged With: , , , , , , , , ,