A response to: “How to claim that that there is less autism in the World.”

This is the original “note” that was posted on Facebook, I included it here in case you don’t have a facebook account or any desire to go to it there.

1. Change the DSM criteria to include Aspergers and tell everyone that the reason autism numbers have exploded is because there are more people with Autism because we are now including Aspergers .The mild forms of autism.

2. Claim it’s genetic even though there are clearly clusters of autism in certain areas. Families were there who had autism explain that they are all related and therefore it’s genetic.

3. Never study identical twins with autism and look at differences.

4. Make up thousands of names of autism but don’t call it autism.

5. Make up reasons for autism. Mom is too old, too young, too fat, too thin, too cold.

6. If you go to vaccine court and claim autism as your vaccine injury, you will lose your case.

7. If you have autism in vaccine court you must never say autism, say encephalopathy instead and if you do say autism you will lose your settlement.

8. If you go to the doctor after a vaccine and say you were injured from it then there must be some other reason for the injury.

9. If the child dies after a vaccine injury make up another name like Suddenly your infant dies. SIDS>

10 If the parent was touching the child when they die from vaccine injury send them to jail.

11. If the parent is persistent that there was a vaccine injury make up a disease so that there is something wrong with the parent. Munchhausen By Proxy or Shaken Baby Syndrome. There must be something wrong with the parent.

12. Side Effects from Vaccine Injury are normal and therefore nothing to worry about.

13. Take a lot of money to study vaccines and autism and use it to buy a house.

14. Make up pandemics once a year and give vaccines that haven’t been tested.

15 If you still get the disease that the vaccine was suppose to protect you from tell them it’s a milder form.

16. Give multiple vaccines at once so that it’s impossible to tell which one was the problem.

17. Never study vaccines together in different combinations.

18. It’s never the doctors fault or the vaccine manufacturers under any circumstances.

19 Never teach doctors about vaccine side effects.

20 . Bribe the parents to get vaccinated.

21.Bribe the doctors to their patients vaccinated.

22. Bribe the schools to get the students vaccinated.

23. Compare vaccinated vs unvaccinated but give the unvaccinated the same amount of mercury.

24. Any doctor that looks at vaccinated children and finds any link whatsoever beat him up and ruin his credibility at all costs.

25. Tell everyone that the rates of autism went down by taking out cases of Aspergers that were added back in when the rates had increased.

I have no interest in adding this person as a friend simply to reply so I’ll reply here, maybe she’ll see it and ignore it just as she would on her profile.

My responses, point by point:

  1. Dr. Allen Frances, who was the head of the group that created the DSM-IV is the man responsible for adding Aspergers into the diagnostic criteria, after which, he said: “At that point I did an ‘oops,’ ” he says. “This is a complete misunderstanding. It was distressing. Quite distressing.” He inadvertently included a very large group of people into an already growing diagnosed group of disorders called Autism Spectrum Disorder. When you add a large group to an already large group, what happens?
  2. First, how does this add to the claim that there is less autism in the world? Second, autism is genetic. That doesn’t meant that there isn’t a sub group that is genetically predisposed to having their symptoms triggers or made more severe by environmental factors, such as toxins.
  3. Actually, they have studied twins that have autism. Read the results here. Hint, they found it’s genetic. Besides, if one twin has autism and the other does not yet they both had the same vaccines, what would you conclude?
  4. I don’t think they’ve made up any, but some of them have certainly come to light lately, especially with vaccine court cases. However, this claim is actually in reverse as many people were commonly diagnosed with disorders such as schizophrenia when they actually had autism. Many people were misdiagnosed with something else. Now that they are becoming more accurate, there is less schizophrenia and more diagnosed with autism. Meaning more, not less.
  5. First, how does this add to the claim that there is less autism in the world? Second, I will agree with you that most of these studies are just ridiculous at this point but I would think that it goes to show that there’s more autism, not less.
  6. First, how does this add to the claim that there is less autism in the world? Second, there’s a reason for that. You have to prove that the child has autism and that the vaccine specifically caused the autism. It has yet to be done.
  7. I’ll give you this one, but only as it relates to #6. Vaccines do cause injuries and if you can prove it caused or otherwise complicated a pre-existing condition, you may win.
  8. “Vaccine injury” is pretty vague here… so I’ll assume that you’re specifically talking about Autism. First, this doesn’t relate to the claim that there is less autism since the child may very well have autism. Second, again, there needs to be proof that the vaccine specifically caused the autism.
  9. SIDS isn’t new and certainly isn’t made up. Also, it happens with or without vaccines. Finally, what does this have to do with autism? If your child dies of SIDS, there’s a very good chance that your child was far too young for anyone to ever know if they had autism or not.
  10. First, how does this add to the claim that there is less autism in the world? Second, please find me cases where this has happened. Does this happen often?
  11. First, how does this add to the claim that there is less autism in the world? Second, you think shaken baby syndrome was made up to explain away vaccine injury? Like the last point, most likely your child was far to young to know about autism and finally, I invite you to shake your baby a whole bunch and see if they become vaccine injured.
  12. First, how does this add to the claim that there is less autism in the world? Second, side effects from vaccine injury? That’s redundant. But nitpicking aside, no one ever said they’re normal. There are rare cases where children become vaccine injured. No one has ever denied it.
  13. First, how does this add to the claim that there is less autism in the world? Second, I believe Wakefield could have bought a couple of houses with how much he made from lawyers during his vaccine studies. Each side has a doctor on the take. Therefore they cancel each other out.
  14. First, how does this add to the claim that there is less autism in the world? Second, I’m assuming you are referring to the H1N1… which was one year. Can you name 4 others in the last 5 years?
  15. First, how does this add to the claim that there is less autism in the world? Second, no one ever said you won’t still contract the disease which you were vaccinated against.
  16. First, how does this add to the claim that there is less autism in the world? Second, your other points seem to have determined that it’s too many vaccines or mercury or that a vaccine in particular. And yet now it’s a mystery?
  17. First, how does this add to the claim that there is less autism in the world? Second, they do all the time. Why do you think they give vaccines in certain combinations? Also there are studies, such as this one.
  18. First, how does this add to the claim that there is less autism in the world? Second, you are clearly unaware of the incredible amounts of malpractice suits and in other points, you reference vaccine courts, where many people are paid through settlements. Clearly it is their fault sometimes.
  19. First, how does this add to the claim that there is less autism in the world? Second, I’m pretty sure you just made this up.
  20. First, how does this add to the claim that there is less autism in the world? Second, I’ve never been bribed, I wish I had been. You’d be better off with the blackmail route what with schools not accepting unvaccinated children.
  21. First, how does this add to the claim that there is less autism in the world? Second, doctors are paid the same whether they vaccinate your children or not.
  22. First, how does this add to the claim that there is less autism in the world? Second, if the parents are bribed and the doctors are bribed, why bribe the school? And how would that work anyway?
  23. First, how does this add to the claim that there is less autism in the world? Second, there’s just so much wrong with this. You said it was vaccine overload, then it was combinations, then it was a bunch of vaccines so they can’t tell which one. Now it’s mercury which is out of just about all vaccines… actually, never was in any vaccines. Ethyl-mercury was, which is entirely different from methyl-mercury. Not that anyone would ever “give the unvaccinated the same amount”.
  24. First, how does this add to the claim that there is less autism in the world? Second, when you say “any doctor”, you mean just one doctor. Which is convenient that you think removing a man’s medical license due to his falsifying his findings and committing fraud is akin to beating him up yet the man that stole money to buy a house was much higher up on your list.. and both somehow add to the claim that there is less autism in the world?
  25. Are you now saying that #1 was actually true? What would you say it proves if Aspergers is removed and the Autism rates go down? Also, Aspergers wasn’t “taken out”, it just isn’t mentioned. Many with Aspergers would still fit the criteria, they’d just have their diagnosis changed to reflect the new “severity” levels in the DSM-V.

For the most part, this is just a big list of attacks on vaccines and really has very little to do with Autism what so ever. It has even less to do with any such claim that there is less Autism.

For each point that I started with “First, how does this add to the claim that there is less autism in the world?”, there was no relation to Autism what so ever. That’s 19 times out of 25? And that was being generous, I could have included a couple of others.

Again, don’t get me wrong, I’m all for making vaccines safer and greener and getting that risk of vaccine injury/reaction down to 0% or as close as possible. I’m also all for parents looking out for their children’s best interest as well as other children’s as well.

However, seeing notes like these just get under my skin. They don’t anger me, but they do bother me.

It’s sad that it’s gotten to the point that people not only think this way but go out of their way to take a whole bunch of vaccine hatred and aim it at Autism.

Many of the points were made up, assumed and just plain wrong. I even included links with some just to prove it.

But more so than that, my son has Autism. He was NOT vaccine injured. In fact, he never even got so much as a fever from his vaccines. You’d never even know he had any.

When you make these notes and make people hate doctors, hate people preventing deadly illnesses and even  make people hate a part of what makes my son who he is… it bothers me.

Yes, some people (children mostly) are vaccine injured. No, vaccines are not 100% safe. That’s all you need to say. Stop dragging me and my child into it.

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When logic trumps emotion, this is what you get

I recently got Gnomeo and Juliet for the boys, it’s quite the cute take on an old classic. Also, it’s very bright, colorful and full of action. Just perfect for a couple of energetic young boys.

I don’ t want to spoil the end for you, so stop reading now if you don’t want to know… They don’t die at the end. Actually, instead, there is a really great feel good moment at the end that should make you quite happy.

20110522-030333.jpg

As the moment happened, Tyler (my 3 year old without Autism) jumped up and said “hooray” and gave me a big hug.

Contrast that with Cameron (almost 6 with Autism) who said “Dad, he has blue hat!”

Now, it’s not that Cameron wasn’t happy at that moment, it’s just that he had made an observation and that became his primary focus.

This tends to happen a lot and some people mistakenly think that Cameron has no feelings or that he lacks empathy but the truth is that it’s just not what comes out of him at the time. The feelings are in there.

Just because the logic trumps the emotion, it doesn’t mean that the emotion isn’t there.

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Trying to fit in with the wrong crowd

I want to share with you a conversation I had recently with someone that isn’t even on the Autism Spectrum, but as you read, I want you to think about how it relates… because this was advice that I had given her as if she was on the spectrum.

Her story

She is a young woman, mother of two and very loving. She’s never understood other parents who are eager to get their children on the bus to school or off to daycare in order to have a break because she’s always valued her time with her children so much that being apart from them never felt like a break.

She was always great at school, always had a good job and always took her responsibilities very highly. Even so, she still loved to get out into the great outdoors, do hiking, camping and even had her hand in a bunch of sports.

Since having children though, she’s given most of that up for the sake of her children, not that they need her that much, just that she’d rather spend time with them than to be out doing other things.

The crowd

The friends and family she has are quite a bit more carefree than she is. That is to say, they enjoy getting their breaks from their children. It’s not that they don’t love their children, and all children too, as much, it’s just that they also value their freedom.

As such, the crowd tends to go out, drink a lot, party it up and endure the hangover the next day. They are more inclined to find ways to get their children out of the house to make sure that they can be as loud and obnoxious as they can be without affecting the children. Again, they love the kids and they’re really not obnoxious but they have the freedom to be if they so choose without children being there.

The problem

One night, the woman found herself quite down on herself as she pondered her own short comings. She was boring. She was no fun. She was a square.

She began to realize that she didn’t like partying, she didn’t like drinking and she certainly didn’t like being obnoxious. She tried her best to go out dancing with the crowd and she did her best to have fun with them. However, most of the time, she didn’t drink, she didn’t try to have conversations over the very loud music and she didn’t want to stay out too late because her children would be up early the next morning.

She felt like a loser.

Meanwhile, the crowd felt weighed down by her. They depended on her to do the driving, they depended on her to be a part of the high spirits of the evening. And no matter how much she danced or sang or got obnoxious… she was never really one of them. She never quite fit in.

She knew it, they knew it.

You can’t fit a square peg into a round hole

Square Peg in a Round HoleThe reality of the situation is that she doesn’t fit in with the crowd. They like it loud, they like to come home late and they like to be carefree. That isn’t her.

That’s not to say she isn’t fun. As I said, she has her hobbies and activities and she actually does drink. She just likes to drink in a quieter setting where she can talk to the people she’s with…. at a time where she can still get some sleep before her children wake up.

They value their freedom, their drinks, their late nights and their loud music. That’s fun to them. It’s not fun to her… yet she tries. She tries so hard.

Yet no matter how hard she tries, she feels like a loser. She feels like she can’t have fun, she feels like she’s boring.

Is she who she thinks she is?

Think about this. What happens if she finds another crowd that actually enjoys doing what she enjoys doing? Will she still see herself as boring?

See, what’s happening is that she’s trying to have fun doing what she thinks is not fun, in order to fit into a crowd that doesn’t fit her.

She’s altering who she is to fit who they are and rather than becoming what she wants to become, she’s depressing herself because she’s not that person. In the process, she loses who she is. She’s not them, she’s not herself… she doesn’t feel like she fits in anymore. That’s a lonely and dark place to be.

When you try to fit in with the wrong crowd, no matter how hard you try, you become someone you’re not. Either you succeed and you’re doing things you don’t enjoy or you fail and you’re unable to do the things you don’t enjoy… either way, you are left feeling like a shell of a person.

How does this relate to Autism?

More and more, we try to “integrate” Autistics into “normal” classes and “normal” society… we teach our children the mannerisms, what certain expressions mean, how to behave in certain situations and so on and so forth but for the most part, we have to remember that what we’re doing is helping them to fit into the wrong crowd.

That’s not to say that I know what is or isn’t the “right” crowd, but I do know that those people with Autism that are unable to tell what others are thinking or feeling are very rarely going to feel like they fit into which ever crowd they may find themselves in.

When they say that depression is common among those with Autism, you have to realize what it is that we’re not only asking of them, but trying to force on them.

The woman that I talked to was simply doing her best to fit in with people that weren’t the right people for her… she may be unaware of why she’s becoming depressed but she’s still doing it willingly.

With Autism, we’ve given most of them no choice. It’s fit in or you don’t belong.

Can you imagine how hard that is??

We can’t stop helping our children and loved ones with Autism to “fit in.” They do need to be able to navigate the world on their own but we have to remember what it is that we’re asking them to do.

The woman in the story can learn where she’s going wrong and adjust her own search parameters to find the crowd that better suits her.

My son can’t.

The only alternative to help the woman, and my son (all those with Autism) is to help them be comfortable with who they are. To help them to fit in still, but to understand why they don’t quite fit the mold as well or as easily as others do and to be content with themselves despite that.

Recognize why the crowd looks at them differently and why they look at the crowd differently and be happy with themselves despite that. Accept the crowd and the crowds differences as the crowd accepts theirs.

Square pegs don’t fit into round holes. Don’t stress yourself or depress yourself in trying. Be happy with who you are.

When you do understand it and accept it, you’ll feel better about yourself, the crowd will feel better about you and even though it still won’t quite feel right, it’ll be a whole lot better.

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Autism and the mystery injuries

One of the biggest problems with Autism, whether your child is verbal or non verbal, is the lack of information. Even if your child speaks quite well, there’s a good chance that you won’t get the information out of them that you’re looking for.

In my case, this is never more apparent than when my son has a random cut, scrape or bruise on his body. And I don’t intend to speak for everyone but I have spoken to more than enough other parents to realize that this isn’t isolated to just my experience.

Introducing the bruise

bruiseThis bruise, pictured right (click to see full size), appeared on my son’s leg this week-end. It’s in the back of his leg, under his knee… which leaves us wondering if it was there sooner and we just didn’t notice, if it appeared during the week-end at some random point or if it actually happened this week-end.

The problem is this… my son doesn’t remember how he got it. This isn’t surprising because most people really don’t remember getting a bruise, since it tends to appear well after the impact that caused it.

But in my son’s case, and I assume many Autistic cases, this is bit more common.

Of all the things he remembers….

My son, like many (but not all) Autistics, has quite the amazing memory. He can hear a story book one time in September and remember it word for word in April. He remembers games I played with him when he was just 1. But ask him how he got a scratch on his face, or a scrape on his arm or, in this case, a bruise on his leg… and he simply will not have an answer.

I’m not sure if it’s selective memory blocking… you know, not wanting to be able to recall a painful event, or if that sort of event really just doesn’t get stored in there sometimes.

What I do know is that it’s not an ideal situation. I don’t mean that from just a convenience stand point but from a safety stand point.

As a parent, you see these injuries and wonder if there is a bully, an abuser, an unsafe environment… you want your child to be safe and not having the information sends your mind into overdrive. Chances are though, he just fell down, hit something too hard, tripped over another student or who knows what… but it’s probably just one of many sores that children are going to get. They play pretty hard.

The Mystery

Still, we’re left wondering. How did this bruise happen? It’s nearly black. It’s very big and not only that, what you don’t see in the picture is that it goes straight across the back of his leg and even appears much more lightly on the other leg.

To me, this means he got whacked with something (like a stick) or that he fell back against something like a hard chair or something.

I’m fairly certain that it’s an innocent bruise (no one intentionally hurt him) but again, I don’t know what did it because he doesn’t know.

As a parent, that’s scary. As a parent of a child with Autism, it’s one more issue to deal with on top of countless others.

If there are studies on this, I am unaware of them. I’m not even sure how they could study something like this. But I suspect that if it was possible, the results would show that I’m not the only parent that has to play detective to find the cause of random injuries. In fact, I would wager that it’s all too common.

Do this happen with you and your children? Please share your experiences.

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Mother’s Day – Remembering how I got here

This is the first part of a two part series. This post, I dedicate to my mother who gave me the strength and experiences that I needed to be able to handle what ever might come may way later in life. It turns out that it is a good thing she did. For that and all she did, I will always be eternally grateful.

I have one of those minds that remembers the craziest things… things from when I was 2, things that everyone else has forgotten… I remember where the scar on my knee came from even though I got it when I wasn’t even old enough to walk.

When you have a mind like that, you have to realize, everything has a lasting effect on you. Everything. Some things have more or less of an effect than others but it’s all there… all the time.

I’d like to tell you about the one thing that sticks out the most in my mind. It wasn’t from my toddler years. It was from my teen years… you know, those rebellious, often depressing, very overwhelming years.

The back story

My mother was what you would probably call “the problem child.” When your mother tells you that they’ve done it all, that there isn’t anything you could do that they hadn’t already done… well, in my mother’s case, it’s probably more true than for most.

She went on to become a paramedic and then a nurse and now works for the city in a government job… she’s done quite well for herself despite what may have been a “troubled” youth.

I remember

When I was a teenager and friends (and not friends) were drinking or even doing drugs…. I was a rather depressed kid. I didn’t do any of that stuff and had no interest in it. However, that didn’t stop friends from trying to convince me to “lighten up.”

What my mother told me, which might not be what most mothers would say, really stuck with me. I’m going to paraphrase it but this is the general idea:

I’m not saying you should try those things but I’m not going to tell you not to either. You’re a very smart boy. I’ve done just about everything that you could do so I know that you’d be alright if you did too. If you really want to try things, I won’t stop you. Just be safe and know I’m always here if you need me.

Ok, I paraphrased a lot.. it was a good talk and it wouldn’t make sense if I told you exactly how it went without context. But I think you get the idea.

Freedom to fail

What my mother gave me was the freedom to fail… at the time, I thought “How strange. Why would a mother tell her son to go ahead and do stuff that he could get addicted to and then… who knows what would happen?”

It wasn’t until years later that I realized that the freedom to fail is the exact the same thing as the freedom to live.

We all know that telling a teenager not to do something is the same thing as pushing them to do it. It’s not until you are given a choice that could shape the rest of your life that you realize a few things:

  1. You are in charge of your destiny. You’ve had control all along… it’s just been pointed out to you.
  2. Others have failed before you. You can follow to gain the same experiences or learn from theirs. It’s your choice and if you’re smart about it, you will gain valuable experiences either way.
  3. You are your own person. You are going to have to make up your mind on your own.
  4. You can only help guide, you can not control. That includes your own children. If your intentions have been good and you’ve done your best, have faith in their decisions.

My mom did have faith in me, even when I did not. Faith that I’d do just fine no matter what decision I made. That’s because she had gotten me to that point where she knew I’d be alright no matter what decision I made.

And in giving me that choice, made a huge impact on who I am today. I see my own children in a way that I know is very different than I would have if I had never had that talk with my mother. I’m not sure if it would be better or worse exactly, just different.

Children of my own

As you know, I have one child with Autism and one without. Would I have the strength, patience and understanding that I have now without my mother having faith in me that day? Possibly, it may have been a little different though.

Autism is one of those things that makes your parenting experience unlike anyone elses. Parenting in general is hard enough but when milestones are missed and all the other challenges that come with Autism, you find that you need to be so much more than the parent that everyone else told you that you’d have to be. It’s so much harder, so much more challenging.

For me though, it’s ok. I learned a long time ago that I have the freedom to fail. Not to fail my children, but to not have the answers. To not be able to be strong every single day of a year’s worth of sleepness nights. To get angry when other parents judge me because my son has a meltdown in public.

It’s not a thicker skin that I’ve developed… it’s that I have a decision, I’ve made a decision. That no matter which decision I make, it’ll be alright. That’s the freedom to fail… that’s the freedom to live.

The world still scares me and I still want to protect my children but I now know that they will be fine. When the time comes, when they are uncertain of themselves… I’ll have faith in them. I know they’ll make the right choice.

The Lesson

She didn’t say it, but she taught me the most valuable lesson I have learned in my entire life, simply by giving me the choice:

  1. I make my own decisions
  2. She has faith in me
  3. If I’m smart, it’ll work out alright no matter what I decide
  4. The freedom to fail is the freedom to live

Love you mom. Happy Mother’s Day!

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