Archive | March, 2012

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.

Comments { 10 }

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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A bit of fatherly advice

By on March 20, 2012 in Parenting

father-childEvery parent’s wish is for their children to have a better life than they did… whether rich, poor, big family or small… we only want our children to get the most out of life, and to do so better than we did before them.

Not everyone has the same advice on how to do that and sometimes we down right disagree with others, that’s fine.

So today, I am writing this for my two boys, Cameron and Tyler:

1. Risks

Through out my life, I’ve had a lot of my ideas pushed aside by family and friends that told me that they’d be too risky to try. Take the safe job, make the safe choice, don’t speak up for yourself or you might lose something…  avoid risk!!

If I could go back, I’d tell myself not to listen to any of them.

Sure, some of those ideas were really bad ideas. Maybe some would have failed. Maybe even all of them.

Maybe some would have succeeded too though.

Either way, it doesn’t matter… because right now, I wouldn’t be regretting having not tried. To at least try means that today, right now, I’d have gained the experience that comes with trying. I’d be one step closer to knowing what things didn’t work which would mean that I’d be one step closer to knowing what will work.

Maybe I’d have really really liked one of those things. Sometimes you never know you love something until you try it. Perhaps I’d have loved one of those things so much that the risk would have been worth doing it… and worth doing it again and again.

2. See things through

For all the things I didn’t try, there were still things that I did try… things that required less risk, or no risk at all. The problem with those things was that I’d never see them through.

I’d start something and lose interest, get distracted by life or simply be unable to finish due to my own short comings. What does that mean? It means I didn’t push myself hard enough to know how or to be able to finish what I started.

It is far worse to never finish than it is to fail and end with valuable experience.

3. Embrace the critics, ignore the haters

There is a very big difference between a critic and a hater.

Haters will do their best to tempt you into an argument or to spark your anger. Their jabs have no substance except to incite emotion.

A critic, on the other hand, may be harsh at times, but will offer real observations and sometimes even advice for moving beyond what is revealed in those observations. A critic doesn’t care if you take their criticism or not; or if you get mad or not. They do not speak to anger. They speak to offer criticism. Listen to them. Learn from them.

Critics are the voice of your failures and failures are the experience you take with you when you do something better next time.

4. No one was ever able to stand out by blending in

If there is one thing that school pounds into you, it’s to blend in. Do what everyone else is doing and they might accept you, be different and they will likely laugh or even bully you.

I’m going to tell you a secret that you might not believe until later… school doesn’t matter. The kids at school don’t matter. What you learn at school doesn’t matter. Trying to fit in with all of that will only result in one thing… you won’t matter either.

Be different. Be proud. Stand up and stand out and do it so well that people take notice.

When you think about all of the greatest people in the world, think about what they do to be the greatest. Do they try to do what everyone else is doing or do they try to be different?

Don’t worry about better or worse. Because you will be worse. But you will also be better. That isn’t what it’s important. It’s not always the best that stand out. It’s not always the best that are remembered.

Just be who you are and don’t ever let anyone tell you that you need to blend in. You do not need to blend in. Not in school. Not ever.

5. Don’t let fear stop you

Dads aren’t supposed to be afraid of anything, but we are. We’re afraid of a lot of things. Sometimes the same things that you’re afraid of. The only difference is that it doesn’t let it stop us, or at least, it shouldn’t. But even dads are human.

I’ve let my fear stop me a lot of times. Remember #1? Risks? That’s what I’m talking about. When a risk seems too big, like I might lose a lot… I let my fear get the better of me and I didn’t even try.

There’s nothing wrong with being afraid of the risk. There’s nothing wrong in being afraid of anything. But don’t ever let that fear be what stops you.

Let me put it another way, maybe you’re thinking of doing something really big but the risk in doing it isn’t worth the reward. That’s fine. Don’t do it. You’re smart. That’s entirely different than not doing something because you’re afraid.

There were some things that I was smart to walk away from. Then there were also things I walked away from simply because I was afraid… that’s not smart.

6. Go for what you want

Figure out what you want. Figure out how to get it. And do it. No matter who says not to. No matter what the risks are. No matter how afraid you are. No matter who might be looking and thinking you’re strange for wanting it.

Do it. Do it for me. Do it for yourself.

You’re already a better person than I am. You have a much better life waiting for you than what I had. You just have to step up and do it.

From Dad

I am writing this for both of my sons, Cameron and Tyler.  It doesn’t matter that one has autism and one does not. This advice applies equally.

No two lives are the same, no two journeys are the same. That’s how it is supposed to be, with or without autism.

Do these things that I could not and you will be happy, I will be happy too.

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An attempt to make “autistic” into the new r-word

By on March 16, 2012 in Autism

If you are in the autism community in some form or another, chances are that you’ve already heard all about the uproar surrounding the new 21 Jump Street movie… if not, keep reading.

So 21 Jump Street was a rather popular television show back in the day, in fact, it launched the career of several people including Johnny Depp.. and one other person quite well known within the autism community, Holly R. Peete.

Now, they’re making a movie by the same name but instead of teenage angst, real life, drama and emotion, it’s a ridiculously stupid comedy filled with cheap laughs.

Don’t get me wrong, I happen to love stupid comedies. I laugh even at cheap laughs.

The problem is that in one particular trailer, the one guy looks at a chart that his officers made and says “That looks like s#!t. What are you, autistic?”

Enter the uproar.

You can see it for yourself, it happens around the 3:31 mark:

?t=3m31s

At this point, I want you to re-watch it and this time, imagine he’s saying the word “retarded” in place of autistic. See now what their intention was?

This is simply not ok. This is simply wrong.

There’s many reasons, but let’s look at two of them:

First of all, anyone who knows anything about autistics knows that, while not all autistics are super organized or particularly amazing at building charts… if you were going to go by the stereotype, as is the intention here, you’d expect that thing to be freakin immaculate. Let me put it this way, if they are going for the whole rain man of over the top stereotypical, stupidly, outrageously funny offensive things to say about autistics, that thing would have been the best damn chart anyone has ever seen.

So ya, they clearly don’t even know what they’re talking about if they can’t get the stereotype right… not that it would have been right either but certainly closer to some semblance of reality.

Secondly, this opens a door that starts a journey down a very dark road. Stereotypes, innuendo and hate in general don’t start out at full force… it starts small.

And if this is the type of precedent they’re trying to set for stereotypical movie humour about autism… let’s just say that none of us would want to see where that road will lead.

I’m all for overly exhagerated stereotypes in search of a laugh… I’m all for the extremely over done ridiculousness of what is real in an attempt to get a chuckle… but this is not ok.

For the record, Holly R. Peete, who makes a cameo in the new movie, has said that she had read the script in advance and that line was not in there at the time.

On Twitter, she said:

So thrilled that #21Jumpstreet is getting such critical acclaim- The show brand means everything to me-so proud to an OG but as a mom of a son w/ autism I’d be totally disingenuous to say I was not bothered by the use of the word “autistic” in the film. I’ve reached out to Sony PR & co-director Phil Lords re:why the choice of “autistic” as a punchline is so upsetting to our community.
Phil Lord co-director of #21Jumpstreet said re: “autistic” line: “We set out to make a funny, irreverent & outrageous movie but not to hurt anyone’s feelings. Our stars are the butt of all our jokes and we feel terrible and deeply sorry that anyone would feel otherwise.”

You can read the tweets here:

https://twitter.com/#!/hollyrpeete/status/180375413527298049
https://twitter.com/#!/hollyrpeete/status/180376189796487168
https://twitter.com/#!/hollyrpeete/status/180383033591992321

Comments { 3 }

Knock knock

By on March 15, 2012 in Autism

I am simply amazed at how Mike has improved in social situations. Take last night for example. We went to Applebee’s to celebrate my brother-in-law’s 50th birthday; a table for 20. Applebee’s, like so many other restaurants is a busy, noisy place with big screen TVs all around and lots of clapping, happy-birthday-singing wait staff scurrying in all directions. A perfect place for a melt-down if ever there was one, and he’s had a few there in years past. I sat next to Mike, who sat next to one of his uncles; this put us near the center of this large gathering. Throughout the night Michael made many attempts to tell his newly acquired Knock-Knock Jokes:

Mike: Can I make you laugh?
Uncle Rob: Sure.
Mike: Knock knock…
Uncle Rob: Who’s there?
Mike: Jamaica
Uncle Rob: Jamaica who?
Mike: Jamaica me crazy!

Now, I know that he was surrounded by family, who know more about Autism and developmental disabilities than most, and that Mike may simply be repeating a pleasurable activity, but I see how he interacts with others, and amazed at how this compares to his lack of interaction with others just a few years ago. Fortunately or not, Mike has a younger cousin with developmental disabilities. I bring this up only to highlight in my mind and in the minds of many members of our family how far Mike has come, and it is Mike’s development that gives us and our extended family hope for the future.

He proceeded to tell this joke and another to his younger cousin as well.

Later in the evening, he accidentally spilled a glass of milk on the table, which eventually spilled on to both his brother’s and my lap. “Dad, I am so sorry. I can’t believe how clumsy I am!” His reaction and intonation were so spot on; properly emphasizing the word ‘so’. There was no anxiety, nor any withdrawal from the situattion.

I give a lot of credit to his school, the Rosemary Kennedy Center in Bellmore, NY, where he’s attended the last two and a half years, and his socialization class on Saturdays at Helping Hands Behavioral Outreach in Melville, NY where he’s been going for 5 years. Both have been instrumental in teaching and modeling appropriate behavior and have been models of consistency. Another factor which has helped him progress is his language; he is able to build upon his vocabulary. I am convinced that his ability to communicate verbally will be the only determining factor in how far he can go in school and life.

Mind you, this is only a step along the way. We still have to remind Mike to say hello and goodbye to others oftentimes, but I am confident that he’ll master those independently one day. In the meantime, when told to say goodnight at the end of the dinner, he promptly turned to the restaurant crowd, waved, and said, “Goodbye everyone!”

The kid knows how to make an exit and an impression.

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