Tag Archives | understanding

Autism Awareness Month – Getting Started

By on April 1, 2012 in Autism

So the month has begun… the month to bring Autism Awareness to the world. More so, to go beyond awareness and try to help people understand the people that have autism, help people understand how autism affects those people’s lives and most importantly, why they should want to know more about autism before they it comes time for them to need to know.

To start the month off, I thought I’d start with some straight forward information.

Facts

Blogs

Here are some blogs that I particularly enjoy and find to have very honest, accurate and even bold points of view, where you can and will learn a lot about autism, should you choose to read them.

News

Communities

Autism Understanding and Acceptance

Autism Understanding and Acceptance

My Request To You

I ask that you please take the time to read at least one article/story about autism that comes to you in your travels around the internet during the month of April and share it. Don’t just pick one at random though… pick one that looks like it may really move you or cause you to feel one way or another. Take the time to really read it… even if it’s just that one time.

And if it does move you, for good or bad, just so long as it makes you feel something… share it. Share it with your social media friends/followers… simply because I asked you to.

Please do not share to raise awareness. Everyone has heard of autism by now.

Instead, share to raise understanding. Share to help others be moved as well.

Because if you feel moved, if you feel anything, that means that you’re thinking about the person. It means that you are looking beyond the disorder.

When that happens, as more and more people begin to really understand, we’ll finally begin to see just how silly our notions of “normal” really are and how judging we can be sometimes when someone doesn’t fit that notion.

Only through understanding can there be acceptance. Only through acceptance can we truly be aware.

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From the CDC: 1 in 88 have autism. Will there be rioting in the streets?

By on March 29, 2012 in Autism

As much fun as rioting in the streets can be, what with the free tvs and tear gas… let’s just all just agree to riot on our blogs instead, where there is less pepper spray.

Besides, is 1 in 88 really worth rioting over? I guess to some, it is. To others, it’s not really a surprise.

By the way, if you want to read, direct from the CDC, as to what all of their numbers were and how they got to this total, check out their report here: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_e

cdc logoReasons

So how did we get from 1 in several thousand down to 1 in 110 and now…. 1 in 88? Well, let me recap for you a bit of my history in the world of autism.

My son was diagnosed at 2.5 years of age… which was about a LONG time after I had requested it. Why so long?

At 1.5 years of age, I asked my family doctor if he thought that my son could be autistic. He knew my son rather well, I went over all the signs and concerns I had… everything I knew about my child, I put out there for him to hear.

He told me that Cameron was fine, he’s really bright, he doesn’t seem to have anything obviously wrong with him…. just give it time. And so we did.

Shortly before he turned 2, I asked again. This time, said that he felt that I didn’t need to bring him in for an assessment and that it’s perfectly normal for boys to not talk at 2.. and to be “quirky.” I insisted. He said that they don’t do assessments for children until they’re 2 years of age so I’ll have to wait either which way…  he’ll put in a request then.

So he puts in the request, we finally hear back from the hospital… his appointment is made for February. He turned 2 in July. Sheesh!

He was diagnosed “moderate to severe PDD-NOS”.

Why am I telling you this story?

Think about it… if my doctor can miss it, even advise against me getting the assessment done… how many other doctors are doing the same? Forget doctors… how many parents are out there missing it? I bet a parent insisting so much is far more rare than we’d like to think it is.

As awareness and information continues to grow, doctors and parents are becoming far more able to recognize the signs. MUCH better! But remember, my story was only from a few years ago.

So even though we’ve come a long way in the last 50 years, we’re not there yet!

As we continue to reach everyone though, the more children will get assessed. You have to understand, if more doctors can recognize it, if more parents can insist on it…. more children will be assessed… and therefore, diagnosed!

The numbers go up!

On top of that, how many children have been and still are being misdiagnosed? Sure there are a lot of children going without a diagnosis but there’s also a lot of children being misdiagnosed. Some children are being diagnosed with ADHD or OCD or SPD…. when in reality it’s a bit of all those things, which may add up to autism (might not too, but you get the point).

So again, as doctors and parents learn…. those wrongly diagnosed people are being reassessed and given the proper diagnosis… and the people that have yet to be assessed might be given the right diagnosis.

To make matters worse, we have the ever changing definitions put forth by the DSM. It was just the last one that first introduced PDD-NOS and Asperger’s into the Autism Spectrum umbrella to begin with. You just know that’s going to increase the numbers.

Then you have geography. Some areas are simply different than others. Some states have educators making the diagnosis, others have neurologists while others go to a pediatrician. And again, some places have more money than others, more resources, better understanding and more differences that can increase or decrease their ability to make proper assessments.

But what about toxins?

I know what you’re thinking… this is all about genetics and avoiding the issue of environmental toxins. Well, no. All of what I just explained *could* maybe explain all of the increases in numbers, but then it might not either.

The truth is that environmental toxins have most definitely increased over time… especially in the last 150-200 years or so… with industrial and technological ages moving faster and faster.

Do I think it’s vaccines? No. Do I think it could be *something* or a combination of a lot of somethings? Fact is, I just don’t know but it certainly could be.

We’re all living life a little differently than our ancestors did… inside and out. We eat, drink and breathe differently than they did.

However, I do know that our environment most certainly does not account for the entire increase. It does not make the numbers go up all by itself.

If our environment does have an effect on the numbers, then I believe that it’s all of the other stuff I’ve mentioned in combination with it.

Ready to riot?

Now the fun part, let’s riot!!

No, not in the streets and no, not in fear.

The truth is, new numbers or not… nothing has changed. The world is what it is whether or not we crunch some numbers.

What we need to do, together, is use the numbers to further educate and further make aware… if it means increasing the numbers even more, so be it! Let no little autistic go undiagnosed! Parents and doctors should NOT be missing it.

Actually, if you think about it, it’s a bit ironic. We raise awareness because the numbers continue to rise and in so doing, we cause the numbers to rise even more! And then when they do, we freak out and raise more awareness! 

The point is, if ever there was a reason to riot, this is it. We need services. We need help.

Not just us parents but the entire community. Autistics need more help in school, more help in the workforce, more help in life. Not to do everything for them but to be there for them when they need it!

My son is growing up. One day he’ll outgrow the services available to him. I would love to know that he can find work that won’t judge him or treat him unfairly, I would love to know that he’ll have services he can take advantage of if he needs to… whether he’s living on his own or not.

I would love to know that if my son wants to and is able to, he can do any job he wants to do, be anywhere he wants to be and do anything he wants to do, because he can, rather than being told that he can’t because of the label that others use to hold against him.

Riot.
Not to stop the numbers from going up.
To help the people that those numbers represent.

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When one child’s autism influences another child’s autism

By on March 28, 2012 in Autism

For the most part, ABA therapy and other such systems separate the child from the world for some one on one coaching… one therapist, one child.

In many ways, this is not a very good practice when the child is having difficulty coping with social situations and they’re essentially removed from any and all social situations. It’s like trying to help a child play the piano without giving them a piano.

Still though, at the same time… there is some benefit to this. We all know how kids are, with or without autism… the phrase “monkey see, monkey do” comes to mind. Children (and certainly most adults too) are heavily influenced by their peers. When they see someone behave a certain way in a certain situation, they believe that it’s just how it is supposed to be and so they behave the same.

influenceSchool

My child is in a special school with classes dedicated to autistic children. There are now 5 classes, most around the 5-6 kids size. Which again, like ABA, has some great benefits which I love but then it also has a few problems.

Now, to be clear, these are essentially the same problems that are found in every classroom, it’s just that these can be amplified when autism is involved.

When you put 5 or 6 children together in a classroom, you find that the children will range in behaviors quite radically. Some children are completely obsessive/compulsive in certain objects or mannerisms while others seem to be all over the place. Some children are quite vocal (you know, the never stop talking kind) while others struggle to string words together at all.

In these types of situations, as you can imagine, the “monkey see, monkey do” world of peer influence can be both encouraging and discouraging.

What you find is that some parents love such a positive place where their struggling children can learn the better behaviors of his/her peers while other parents fear that their children will pick up the unwanted/not desired behaviors of some of the other children.

Friends

That’s just school… the same holds true with friends. And this is where things can get… uhmm… sticky?

As a parent of a child with special needs, we all wish for nothing more than for other parents and their children to look passed those needs and just be friends for the sake of being friends. Have play dates, birthday parties… have fun together.

You have to understand that their child, whether they have autism or not, may pick up some behaviors that may be unwanted in their house. That quirky, “it’s just an autism thing”, behavior that you tell your friend that you get used to… might not be something that they want to get used to. And they’ll be sitting there hoping upon hope that their child doesn’t pick it up from yours. They’re not afraid of autism being contagious or anything… it’s just that they know that kids will be kids.

This divide (if you can call it that) even exists in the autism community, I have found. Let’s say that you have a child that is integrating well, learning and desiring to be social and their future looks promising… and then a fellow parent in the community invites you and your child over for a play date or birthday party or something because they don’t have a lot of options, they don’t have a lot of friends and they’re hoping you and your child will be there, because you’re both in the autism community… but their child isn’t coping so well. They are easily angered, aggressive, have mannerisms or behaviors that you hope your child does not pick up…  suddenly, you’re “the other parent” that I had just described in the previous paragraph.

You’re both in the autism community so you should be far more understanding and willing to go ahead and do it but at the same time, because your child does have autism, you know they’re far more likely to pick up those behaviors and mannerisms than a child without autism would.

You find yourself understanding why other parents whose children don’t have autism are reluctant to allow their kids to play with yours… because you find yourself being in the exact same situation.

Suddenly ABA isn’t looking so bad huh?

Peers

We can’t shelter ourselves from our peers anymore than we can shelter our children from theirs. Ultimately, bad behaviors are out there and we’ve picked up some from others and our kids will most definitely pick some up from other kids.

It sure is hard though… seeing your child do something at home that you don’t like when you saw some other kid do earlier.

Autism makes it especially hard… when you see your child being that “bad influence” for others and at the same time being very likely to pick up those bad behaviors from other “bad influences”.

I use quotes because most kids aren’t bad influences. They just have some behaviors that you do not desire for your own kids to have.

Ultimately it’s up to each of us to decide what is best for our children, what will and won’t be a good influence on them. But it sure is easier to ask other people to be understanding of our unwanted behaviors than it is for us to be understanding of theirs.

Be careful what you wish for

It’s funny, those of us who have children that don’t speak for a long time… we wish and wish and wish for them to find their voice. Then they do. Then a few years later we’re telling them to stop talking all the way through a movie, or to stop talking and eat or… just to stop for a minute!

Being social is the same, in a way. Autism is classified in the way it makes being social so difficult.. and so we wish and wish and wish that our children can be more social and go to play dates and birthday parties… and then when it happens, we fear the influence!

How can we wish for something so bad… and then not want it again so quickly? Is that what we wished for? Were we unaware of the issues that would come with our wish or were we more than willing to accept those issues if only our wishes could be answered?

Because it seems to me that it’s easy to forget about not caring about the issues when the issues would be a welcome problem to have… that doesn’t diminish the problem though.

We still want our kids to stop talking all the way through dinner or the movie we’re watching. And we still want our children to be around positive influences more than negative ones.

But at the same time, we can’t forget the alternative… we can’t forget all of those out there who still haven’t gotten their wish.

So many people would love to have their children ruin their movie by talking through it… because it would mean that they’re talking. So many people would love to have to worry about what bad behaviors they might pick up from other kids at a birthday party…  because it would mean they’d be at a birthday party!

When something seems like a problem… don’t think “be careful what you wish for” and don’t think “monkey see, monkey do”….  instead, think of another old cliche….  take nothing for granted.

So I think, and this is just my opinion, that sometimes a problem is a good problem to have. Because not having that problem can be so much worse. So keep the big picture in mind when you make these decisions… as I said, it doesn’t diminish the issue but perhaps it will give you a new perspective.

Besides, despite this whole article… not all influences are bad influences. There could be some good things picked up along the way!

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Opinions

By on February 28, 2012 in Autism

My 13-year-old son Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfect normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex, who has autism, presses three (not our floor) and nine (our floor). “Alex, press five, please.”
“Noooo!” he says. “Alex, press five.” “Noooo!”

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

“Noooo!”

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though, because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please…  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting plain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

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Birthday parties, autistics, parents and choices

By on February 9, 2012 in Autism

While many parents feel a great deal of pain in accepting the reality of a birthday party-less life for their autistic child, I have found that there are in fact some parents, a small number, that just don’t seem to get it.

The usual problem


birthday partyThe problem that most autism parents face is isolation… that feeling you get when your child is never invited to birthday parties. The parent feels this through osmosis, meaning, they feel isolated because their child feels isolated. They know that the question is coming one day: “Mom/Dad, how come I never get invited to birthday parties?”

It’s a terrible feeling, and not just because it is saddening, but it’s also maddening. Because deep down, you know the reason. In fact, in a way, you probably don’t even want your child to go to those birthday parties. So loud, so bright, so much excitement, socializing, awkwardness…. yes, for many children with autism, it’s far more a nightmare than a dream and yet… the child doesn’t know that. They just know, or one day will know, that they are missing out on a world of fun.

And so, as a parent, you are left with a twisted up stomach, knowing your child feels alone, knowing your child feels like they’re always left behind, knowing that one day your child will ask you and knowing that one day, you’ll have to answer.

The unusual problem

In my son’s (Cameron) case, we don’t have the usual problem because of the great school that he attends. He is in a “regular school” but they have dedicated 5 classrooms to children with autism, which means that his friends all have autism as well.

So when his friends have a birthday party, he’s invited. Or when he has a birthday party, he has friends to invite. It’s actually pretty awesome in many respects because, not only are they not missing out, but they’re gaining those valuable party skills that they’ll need in college (hey, I can dream, can’t I?).

Here’s the thing… even though the other kids in all of those 5 classes have autism, not all of their parents really “get it”. What I mean is, they don’t realize how lucky they are to have their kids going to birthday parties.

The problem that I face, is whether or not to invite certain other autism children from those classrooms. They’re the ones that easily meltdown, easily get aggressive, have little verbal ability…  you have to understand, they’re great kids and I love to see them when I stop in at the school, but it’s obvious that they will need some extra help and attention at a place like a birthday party.

What I expect, and this is probably where I am going wrong, is that their parents would understand this and do something as simple as… stick around. You know, go to the party and be there with their child to help out should a meltdown occur, to say to me “oh, don’t do that because my child doesn’t like that” or “my child can’t eat that”…  stuff like that. I don’t mind changing things up on the fly, I’m an autism parent too!

But they don’t do that. They leave.

And to be fair, I’m not talking about the parents who honestly and truly have something they need to do, like work. But the ones who see it as a break…. a chance to be free.

It’s not a chance to be free. It’s a chance to learn valuable socialization skills. It’s a chance to do something that many other children with autism can not. And this parent is taking it for granted. They’re taking advantage of it.

What to do?

So at my son’s next birthday party, I have a choice to make.

Do I invite that child even though I know that things could be… well, let’s just say, more of a struggle?

Should the child miss out because of their parent? Should the child be punished? Or, would it be more of a punishment to actually invite the child to a place that he/she won’t be able to cope with? I mean, if I don’t invite the child, the child stays home with their parents, where they’re comfortable and at ease, right?

I’m not really sure what the right answer is… all I know is that it would be so much easier if the parent just took it more seriously. If the parent would see it for what it is.

To those parents:

Don’t make me have to choose whether or not to invite your child just because you can’t be bothered to stick around.

Birthday parties aren’t the same for you or I, compared to “other parents”. Not for the person throwing the party nor for the parent of the child that is invited.

I’m sorry that it’s not happy, fun, break time for you like it is for other parents. But that doesn’t mean that it can’t be a really great time.

You need to step up.

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