Tag Archives | acceptance

Should you tell a stranger if you suspect their child may have autism?

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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The Amazing Race to Understand Autism

This post is dedicated to a young man, who’s Eagle Scout project is to not only raise awareness but to give people a very unique perspective into Autism that will go a long way to their understanding and acceptance.

Justin is 14 and his older brother Gregory, 17, has Autism… the kind of Autism that makes it difficult for him to tie his shoes or speak.

Justin had the idea to have an Amazing Race style fundraiser where, not only do you race, but you also complete tasks designed to make you struggle as though you had motor skill issues, language impairments and so forth… so that you can better understand what it’s like for his brother and others with Autism.

The only downside I can see to this is that it’s local to Sammamish, WA… which means that only a certain number of people will likely be able to get involved. The reality is though that this really needs to become a national project… much like Autism Speak’s “Walk for Autism.”

I am quite impressed with the local media for not only picking this up but giving Justin and his family good quality time to explain it. That’s really very decent of them. You can view the news clip here: http://www.king5.com/new-day-northwest/The-Amazing-Race-to-Understand-Autism-126210108.html

All of the proceeds will go to Autism Speaks.

If you are in WA, or willing to get there for this event on August 13, you can visit his website to register at http://raceforautism.wordpress.com

Even if you can’t get there, let’s show this boy and his family some support for such a wonderful idea.

 amazingredbluelogo

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My little brother has autism

After my last video, some people asked for a video from a child’s point of view. I thought about it from the point of view of Cameron’s brother and what he might say… this is the result.

I hope you like it:

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We ask to not be judged and yet…

When I started the project ‘Autism Understanding and Acceptance’, I did it with the intentions of helping those without Autistic children to better understand and accept people with Autism as well as the parents that do have children with Autism.

I knew though, that it also meant doing the same for parents that do have Autistic children. Far too often I’ve seen parents disagree, quite vocally and with much anger, where one has a child with Aspergers or “high functioning” Autism and the other has a child that is far lower on the spectrum, much more severe (nonverbal, not toilet trained, etc.).

A recent news story

This morning, I saw this news story where a woman abandoned her 10 year old, severely Autistic son to a hospital. He was just left there to wander the halls. When they found him and talked to her, it turned out that she was bi-polar, unemployed, has 2 other children, going through a divorce and being evicted.

Along with the story were a lot of comments, including extra comments from those who posted it on Facebook and so forth. Some were with some level of understanding while most were very judging…. some were even full of a lot of hate.

So I copied the link and shared it in a couple of places, asking what people thought… and one such place was my Autism Understanding and Acceptance fan page. I picked this place in particular for a reason.

The authorities press no charges, her peers do

In the article, it states that the authorities are not pressing charges. They are instead, focusing on the child and making sure that he gets the help and care he needs.

Parents on the other hand, not all, were pretty quick to pass judgment. Many stating “you just dont leave your kids” and “our kids aren’t throw-aways”.

Many parents, feeling for the child, imagine his loss, his confusion… he no longer has any semblance of his past routine, he no longer knows anyone at all and he no longer knows where he is. He must feel terrible and afraid.

How quick we are to judge

less judgingThe truth is though, that not one of us has walked a mile in her shoes. The truth is, not one of us knows her story, his story or what preceded that day.

The article tries to paint the picture with a quick list, as I did above (eviction, divorce, unemployed, etc) but that only gives us an idea.

The fact is that we don’t know how hard it really was for her, we don’t know for how long she struggled with this decision, who she talked to about it, what advice she was given, what her other choices were (or weren’t).

For that matter we don’t know what other assistance she tried to receive. Did she exhaust all of her financial options (there’s not always a lot of support from the government if you’re unemployed), did she exhaust all the options her local charities/groups could afford her? Did she get turned away from medical facilities for having no insurance or even for having her own disorder (bi-polar) to contend with?

We all know how hard it can be to get proper services and yet we’re quick to suggest that it would have been so simple for her to have the resources handed to her to avoid her having to resort to abandonment.

When you’ve met one child with Autism….

Another truth is, we don’t know just how hard it really was. I know it’s hard raising my 2 boys, one with Autism (not severe) and one without. This woman had 3 children… and one had severe Autism.

And in our minds, we can picture that… but some small part must also be saying “I don’t really know because I’ve never met him.” The reason for this is that it’s exactly what we tell teachers, doctors, professionals, other parents and everyone else when they tell you “I know what it’s like”…  no, they don’t, because each child is different.

Furthermore, each parent is different. Some people simply aren’t good parents. Some people are really NOT good with special needs children. Not everyone has the same patience, tolerance, understanding, stress, anxiety and coping levels that we might have.

Would I have been able to do better than her? Would I still be caring for that little boy? I’d like to think I could but you know what, I can’t say that. I can’t possibly know.

My children aren’t like hers. My situation isn’t like hers. My life isn’t like hers.

Understanding and Acceptance

It’s not exactly hypocritical but it’s pretty close, to judge this woman harshly and then ask others not to judge us.

When my son hits the floor at the grocery store, kicking and screaming, I deal as best I can but most likely I’m just paying the cashier to get us out of there. Other parents judge me. I can see it, I can hear it, I can feel it. And I hate it.

I make a very conscious and concerted effort to not judge others in the same way. When I see a screaming child, I look at the parent and smile. They know I’m thinking “It’s ok.. don’t worry about it.”

This situation is far more extreme but it’s no less different. We can not ask for others not to judge us all the while quickly, and vocally, judging another parent at the first media story we read of her.

Media stories seldom tell the whole story, media stories rarely are as accurate as they should be. But even still, from this media I can take a few points:

  • The child was 10 years old. That means that for 10 long years, she did her very best. She tried for everything she was worth and probably made huge sacrifices. Who knows how much the other 2 children missed out on while that boy needed so much attention. She didn’t just throw her hands up and give up on her first day.
  • We don’t know how hard it was. The article doesn’t say she was crying, but it doesn’t say she wasn’t sad about it either. It was very likely, one could assume, that it was a very very hard decision for her. After 10 long years, giving everything she had, she had to give him up and hope for the best.
  • She could have done far better than leaving him to just wander a random hospital but she could have also done much worse, take Casey Anthony’s story for example.

I would never give up my children but it doesn’t take a lot of television watching to realize that not everyone is parenthood material. Not everyone that has children should have children. And many of those people recognize that. It might not be right, but I can respect that. If they’re willing to do their best, and fail, and admit that they can’t do it.. I’d rather they gave up that child.

Adoption agencies are there for a reason. You can judge a person for giving up their child but for some people, they just have to. They aren’t you. The child may very well be better off with someone else than with a parent that only pretends to be a good parent… someone that may end up hating that child enough to do harm.

A person that snaps is a dangerous person. People can be pushed over the edge and that edge isn’t the same distance for everyone.

As part of understanding and acceptance, I recognize that not everyone can raise a special needs child. Not everyone can live through the same stresses that I can. Not everyone has it as easy or as hard as I do. And no one… not one person, is the same as me or my child.

Maybe I don’t always understand and maybe I can’t always accept… but that doesn’t give me the right to judge.

Understanding and Acceptance isn’t reserved for those without special needs children. I think we all could do with a little more of it.

 

Update 10:26am: This news piece shows the mother in court, explaining why she did it: http://www.wsvn.com/news/articles/local/21004795218839/

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If you could turn back time and undo the Autism

If I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am. – Temple Grandin

This topic tends to come up a lot and tends to cause some tension between people when really it shouldn’t. The truth is that, just as much as Autism is a spectrum, so are the thoughts on whether or not to cure Autism.

I mean, obviously there’s really only two answers.. yes or no… but the reasons for these answers are quite wide ranging. And none of them are wrong.

Understanding the reasoning

There are some people who benefit from the way their brain is wired, becoming known as savants. They are extremely gifted in math, music, art… usually one specific thing out of a wide range of abilities.

However, that’s not usually the case. Still though, many Autistics and even parents of Autistics feel that there is nothing to cure. Autism is a part of who they are, who they will be and is perfectly natural. Yes, it may present some challenges but removing their Autism would be like removing their sense of humour, or their unique way of thinking.

Sadly, this isn’t true for everyone. For a very large part of the Autism community, Autism is a very real disability that renders a person unable to speak, function… live an independent life. It can make a person very aggressive, fearful and even, as some would call it, locked in their own world.

For people like that, for the people who have to make the hard decisions on behalf of those people… it’s quite easy to understand why they would want a cure. It’s quite understandable that they’d see very little to no benefit of having Autism and would never hesitate for a second in wishing they could go back and take it away.

These are just some examples, as I said, there’s actually a LOT of reasons for answering yes or no.

None of this is really new to anyone, however it should be pointed out that a big part of understanding and acceptance also includes doing so with each other. We can’t judge and condemn those who would choose differently from us when their circumstances are very different from our own.

When my wife asked me

who am iRecently, my wife asked me “If you could turn back time and go back to under Cameron’s Autism, would you?”

My first reaction was, and I’m sure if you’ve read my blog for a while, you’d agree with this: “Have you met me?”

The truth is though, from a strictly curiosity stand point… like, let’s say there was a preview button, where you could simply see how different your child would/could be without Autism… I’d love to hit that button and see.

But would I remove the Autism? Or, to put it another way… would I take Autism away from him?

The answer is no. I would not.

I believe, for me and for Cameron anyway, that he’s actually doing very well and will likely have a good life ahead of him. It will likely be filled with his fair share of struggles and maybe even some very depressing moments… I know my life was… but I think he’ll turn out just fine.

The thing is, I do believe that Autism is a part of who he is. It shapes how he sees others and the world around him. It shapes every bit of the input that he takes in as well as his output.

It will give him unique insights into the world, a very different point of view.

For better or worse, the struggles and turmoils that he’ll very likely have to endure, thanks to that Autism, can make him a stronger person.

With proper guidance, lots of love and tons of encouragement… he can learn to focus the negatives into positives, in time. He can learn that all the greats throughout history saw the world differently, it was that gift that made them great.

And those people were outcasts, they were seen as different.

Would I go back and remove Autism from him if I could? No. He has the potential to be great with or without Autism. He has the potential to overcome any adversity that life presents him.

You may feel differently than I do, I can respect that. It’s a personal opinion that each of us makes for different reasons.

My answer comes with a responsibility

I say no because I believe that Cameron can be a wonderful human being because his potential is limitless.

I also say no because I dedicate my life to being there to help him up when he’s down, to help him see the positives in the negatives, to help him recognize the opportunities and to help him learn how to break down the walls that try to get in his way.

And I know that my wife, his teachers and the people that we have in our lives will support Cameron in the same way.

The reality, the way I see it

One day his dog will die, one day he’ll have his heart broken, one day he’ll feel very alone, one day he’ll have financial trouble….  one day, me wife and I won’t be here any more.

And as much I’d like to protect him from all of that… I can’t. And I shouldn’t. These things are a part of life and these things can build character or ruin a person. They’re the trials of life.

And as much as they suck, they’re a part of life.. and for Cameron, that includes Autism too. For all it’s benefits and even for all the incredible drawbacks, it is what it is and protecting him from it would be taking away a part of who he is and who he has yet to become.

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