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We ask to not be judged and yet…

By on July 11, 2011 in Autism, Autism News

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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The importance of friendships for autistics

By on July 10, 2011 in Autism

I often hear people talk about how important friendships are, to have friends, to be social, to interact with your fellow human beings.

Sometimes I question this because really, who says that you have to? Who says that some people can’t be much more content just being by themselves, doing their own things. Who are we to tell others what they have to do or what they really need in order to be happy?

Then, there are those people with Autism that fall all over the spectrum…. some who want friends but can’t make any, those who want friends and get friends but still feel like they can’t, those who do not want friends at all and have no friends and even, strangely, those who do not want friends but always seem to end up having friends.

It is a spectrum after all.

Pushing your child into friendships

If you’re in the “must have friends” camp, do you push your child into situations to make friends? Do you tell them that they have to try to be friends? Do you find that your behavior or things you say may make them have the same “must have friends” beliefs you do and if you do, do you think that it might just set them up for depression when/if they are unable to make friends?

On the other hand though, if you don’t push them… perhaps they never will make friends, when in reality they really wish they could. Autism presents a pretty large barrier in the way of fear, miscommunications and more that make is very difficult to make friends.

Perhaps your child may even feel that they do not need or want friends but simply does not understand the benefits or positives because they simply have not had a friend before. Maybe they will be much happier when they eventually do have a friend.

The one thing that is for certain

friendshipI can tell you one thing with absolute certainty… if your child struggles to make friends, but wants to make friends and does have a friend… you had better set aside time and find a way for them to get together.

Your children will have a lot of things and people in their lives that they will feel are important but if they have to deal with the complications that Autism presents, they are going to need the extra time.

Friends can be very rare to a child with Autism, friends can be rare to some children in general. And if they require that kind of relationship, if they get really sad because they have no friends, then you, as the parent, are going to have to give up some of your time to let them play.

You’ll have to brave the weather, give up a movie… what ever you have to do.

Being friends, like everything, takes practice. Communicating, sharing, taking turns, imaginative play…. everything that you can imagine about being friends… takes practice.

And the more practice you get, the better you become at it. Not only to become better friends but to make more friends.

Cameron and his friends

Cameron had a couple of friends, sort of, in his first year of school but really, they were more like people his age that he felt more comfortable with than the others. This year though, he has a couple of friends in his class that he actually identifies with and enjoys having with him.

He not only desires their company but he needs it. This is a huge blessing because, while I wouldn’t really mind if he had no interest in having friends, I, myself, am happier that he does like having friends.

He is so happy with them. He is so happy when he knows he’ll get to see them.

And we’re more than happy to accommodate him as much as possible.

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Sometimes being fair and honest can seem a little harsh

By on July 9, 2011 in Autism

If you’ve followed my blog at all, or even gotten to know me on Twitter or Facebook, you should already know that I’m all about the limitless potential of all children, with or without Autism. My whole goal is to not just raise awareness but to have people understand and accept people with Autism for who they are.

However, you should also know that I’m never one to forget just how hard Autism can be on a person. I’m not the type of person to write about the good and/or bad without acknowledging that the opposite is also true.

The situation

I like to come up with my own “quotes” or thoughts that I share, some personal insight that perhaps others may or may not share. I try to inspire or get people thinking as much as I can.

Recently, one such quote has been “corrected” a few times now on me, which is why I bring this up in this post.

No matter the severity, never underestimate a person with Autism. There could be brilliance struggling to get out.

On more than one occasion, some parents have tried to tell me that it’s not “there could be brilliance”… it’s “there is brilliance”.

Let’s be fair

The truth is, I am an optimist and believe that anything is possible, anyone is capable of anything but I’m also very grounded in reality. The reality is that not everyone is brilliant… Autism or not.

Now, some Autistics discover a powerful strength in one specific field, whether it be music, math, art… what ever. Some are so amazing that they are classified as a savant.

The fact is, most Autistics are not savants though.

I realize that it’s going to sound harsh (see post title) but in reality it’s not. Not every single person with Autism is brilliant. It’s just not any more likely than it is for any other people.

As I said, it’s not to say that they can’t be brilliant at something, or work really hard to become brilliant… but the fact is just that, not everyone is brilliant.

My answer to those who correct me

My answer to those people is: “I said what I meant and I meant what I said.”

no labelsI can’t, in good conscience, refuse to label all Autistics as disabled or slow or having a low IQ and then turn around and label them all as brilliant. If I am expected to avoid labeling all Autistics to the negative, then I must also avoid labeling all Autistics to the positive as well.

Instead, I’ll focus on potential because everyone has potential. I’ll focus on possibilities because anything is possible. 

But I will not place unrealistic expectations or insinuations on anyone in an attempt to be overly optimistic and happy sounding.

I’m sorry if this post sounds a bit like a rant or if it sounds a little more negative than I usually am, but the next time someone corrects something I say in such a manner, it’ll be far easier to point them to this thread than it is to try to explain it all over again in 140 characters or less.

Don’t put a label on Autistics that you wouldn’t put on anyone else. Not everyone is brilliant. Not everyone is dumb. But everyone has the potential to be great.

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If you could turn back time and undo the Autism

By on July 8, 2011 in 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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Dear researchers: please stop

By on July 7, 2011 in Autism, Research

I used to argue that all research was good research, that information is simply good to have no matter what it is. But at this point, I have to revisit that position and question it.

If your research concludes with….

Listen, I won’t argue that you’re more than qualified, you get paid very well and I respect what it is you do and what you’re trying to do… I understand you have the best of intentions, but here’s the thing:

If your research involves the phrase “may increase the risk of Autism” or anything similar… I ask that you please just don’t even tell anyone. Keep it to yourself.

In fact, if you know, going in, that your findings won’t result in 100% of all cases… don’t even bother doing the research. You know full well that a study on how close parents are to a highway when they have a child will not result in 100% of all close proximity cases having Autism so just don’t even bother doing it.

What the results mean to us

statisticsIn the beginning, these studies were very intriguing and really got people thinking. People wanted answers, we were starting to get answers. But what are the answers, really?

“May increase the risk” simply means that instead of 0.1% to 99.9%… now it’s 0.2% to 99.9%.

As far as we know, there’s always a risk of your child having Autism. So it’s not 0%. And we don’t know what causes it so we can’t do anything in particular to ensure it happens (not that anyone would want to).

So ultimately, all you’re really telling us is that doing something to increase the risk actually has very little bearing on whether or not our child with have Autism at all. Because for every study that says the risks go up, I can show you dozens… hundreds of parents that contradict that study and yet their child still has Autism. Or even better, parents that fit the study to a T and yet their child does not have Autism.

Will we ever move on beyond the Refrigerator Mom theory?

Granted, no one thinks Autism is caused by an uncaring mother anymore but it would seem that we certainly haven’t moved on from blaming the mother.

Recent articles include taking antidepressants, not taking prenatal vitamins, environment they live in (twin study) and older studies along the same lines include jaundice, c-section and other birth stresses, living near a freeway… and the list goes on and on and on…. and on.

If you read those articles and others, another catch phrase they use often is “new insight into autism” and yet.. a month later, a new study is released with that same catch phrase and the old one is all but forgotten.

What all of these catch phrases and conclusions really tell us is “it’s the parents fault, they did something that caused it, let’s find out what it MIGHT HAVE BEEN”.

What we’d like to hear

First of all, no one is opposed to finding out that some environmental factor or other possibility is the reason for our children having Autism. We just don’t want to know what it MIGHT BE. We just don’t want to hear about an increased risk anymore unless you are absolutely certain.

Tell us what caused an increase in 100% of the children. Heck, we’d even be ok with 75% or more… because then we’d know what to avoid for sure.

But “an increased risk” really only tells us that you blame us, will keep finding ways to blame us even though you’re not entirely sure why or how.

It’s now out of hand

These studies were intriguing at first, but now they’re just out of hand. It seems we get a new study per month that says they found something that increases the risk of Autism.

But new parents don’t read the ones before right now. They only read these stories as they become pertinent to their world… which is right now, when they’re about to become parents for the first time.

If they had the back story, if they had read the dozens of studies leading up to the one that will be released next month, perhaps they’d know just how out of hand it has all become. But they won’t read those previous stories… they’ll read the next one and believe it. And they’ll be scared.

They’ll take their prenatal vitamins, they’ll sell their house and move away from the freeway, they’ll avoid vaccines, they’ll risk their baby’s life avoiding a c-section and they’ll do it all out of complete and total fear from what they read in a recent study and for what?

The sad thing is, they could do all that and still end up with a child that has Autism. And then what? Do they wonder what they did wrong? Do they blame themselves since that’s what the studies have taught them to do? Or do they accept that despite all the risks they avoided… it was just meant to be.

Your studies mean very little to me any more. I find them to be a waste of money, a burden on the system, a way of blaming parents further, a media circus and a panic storm for new parents.

Crunch your numbers if you have to, talk to other people that did the same thing, compare those numbers, find others that did the same… and so on. Keep doing it until you have some actual answers for us. Until then, stop running to the media every time you have a chance to get your name in the paper.

 

Other similar stories:
Autism shouldn’t be about playing the blame game
“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”
“May increase the risk of autism” studies versus real scientific research

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