He's "a little ADD"

After all, it's not like it's sometimes hard to distinguish autism and ADHD now is it?

Although children with autism and ADHD may be behave differently, there is evidence that these disorders may be caused, in part, by the same gene.

Gee, how curious. And her son was suffering from a seizure disorder at the time of diagnosis, which brings up the possibility of misdiagnosis.

Hey, he could have had autism and improved to the point that he's subclinical. Such things do happen. He could have had ADHD and a seizure disorder. Or a brain disorder that caused seizures and communication deficits. I notice she's never been particularly specific about who exactly undiagnosed him. Her DAN! doctor? I think she's also far too financially invested in autism to ever admit he was misdiagnosed, if that is the case.

But boy, that autism could come back any second now. Any second. Or, you know, it could still be there and just be less obvious.

BTW - Time has a great article. Note how his parents react at the end.

Jenny McCarthy Is Full of Poop

Warning. This is a gross post. 

Ok, so I read Jenny McCarthy's blog over on Oprah's site, and it's pretty much as vapid as I thought it would be. A recent post illustrates this about as well as anything. She waxes poetic about poop. About how she regularly has her son's analyzed, I guess so she can have an OCD meltdown about all the bugs that are in everyone's poop.

Seriously? That's what poop is. That's why you wash your hands after you come in contact with it. It's full of bacteria. That's normal. It's true of everyone's poop. And if it's not, you're in for a world of hurt, 'cause you've killed off things that help you digest. Sheesh! 

I guess that's a big thing in the woo-sphere now, though, to be convinced that some product is clearing your poop of all the hordes of hidden parasites. Someone even once linked me to some forum where they actually *gag* examined the stuff with a pokey stick to see what all imaginary critters from the black lagoon they were killing off. 

Anyway, she was shocked to find out her poop was just as full of yeast and bacteria as her son's. Gosh golly gee, it couldn't have anything to do with that being normal, ordinary, everyday poop, now could it? It must mean she should immediately consume evil big pharma products that kill yeast. (You see, big pharma is ok when they kill naturally occurring internal flora, and it's ok when it paralyzes part of your face to hide wrinkles from all the chain smoking you used to do, but it's not ok if it saves the lives of children from measles. )  Everyone clear?

Anyway, who does this? Seriously. I've heard about taking a crap all over the blog, but she's doing just that literally. I bet her tweets about crapping are just as entertaining. That woman craps pure yeast and bacteria infested gold. Speaking of gold, this post on it was hilarious. 

Let's finish up with a song, shall we?

Jim Carrey Talks Out of His Ass

Yeah, remember this scene?

It's being reenacted over at the Huffpo, only not as intelligently. 

Jim Carry decided to weigh in on the whole vaccine issue, since he's such a huge expert. Now, I've heard from other parents who are confused as to why I call this anti-vaccine, so I'll explain. Jim Carry's technique is what's known as concern trolling.  

He pretends to be on the side of vaccines with concerns, but the intent is really to get people to stop using vaccines. Some of his concerns are hyperbole. Some of them are outright fabrications.  No matter how many times he and Jenny McCarthy and their ilk say they're "not anti-vaccine," it's a lie. Repeating the phrase doesn't make it true.  

Apparently back in February, CNN commentator Campbell Brown said:

"As a mother, with a second child on the way, I believe this is vital to the safety of our children and must be said. The verdict is in. There is no connection between vaccines and autism. And it is time that all of us get our children vaccinated."

Seems a reasonable enough statement to me. But what do I know, I'm just a highly educated mother. It's not like I'm some famous Canadian actor or something.  

Carry's take on it:

But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won't be adversely affected by the MMR, let alone that all vaccines are safe. This is a huge leap of logic by anyone's standards. Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

Firstly, calling the Omnibus decision a "ruling against causation in three cases out of more than 5000" is disingenuous. What actually happened is that the lawyers representing all those claims found their three best cases, their three most clear-cut slam-dunk cases to represent the three most popular theories on how vaccines could cause autism. The three theories were:  thimerosal-containing vaccines cause autism, the MMR vaccine causes autism, or that the MMR vaccine causes GI problems (ie Wakefield's leaky gut theory.)

Not only did they present their three best cases, they didn't have nearly as much of a burden of proof as they would to scientifically prove MMR causes autism. They only had to show "50% plus a feather," meaning it was possible that the MMR could cause autism in the way they outlined, not that it was probable, not that it was the best theory around. They failed. The courts ruled that none of the three theories were at all plausible, and in fact “The evidence was overwhelmingly contrary to the petitioners’ contentions.”

So, Mr Carry, put a fork in it. It's done. Campbell Brown is right. 

But no, he goes on to claim that "no one without a vested interest in the profitability of vaccines has studied all 36 of them in depth." That's  a cruel thing to say to researchers who work to try and save the lives of children. If profit were the only motive, we'd have fewer vaccines. Medicines to try and treat infections are far more profitable.

 

Anyway, he goes on to smear anyone who works for the CDC and the AAP along with anyone who ever took research money from a pharmaceutical company.  And, of course Dr Paul Offit, because he once worked on a Rotavirus vaccine, which means he's tainted for life and unable to articulate any opinion on vaccine safety. 

Not only did I forget to wear my tinfoil hat, which I think is a requirement to truly understand this vast government conspiracy to vaccine injure children, but it overlooks the obvious and clear profit motives of vaccine opponents. Seriously. Wakefield anyone?  Geier?  

  

Carry also moves the goal posts and throws ADHD into the mix with autism as something that vaccines supposedly cause. That's handy, because if you add enough conditions in there, you'll eventually find a few that haven't had vast amounts of research done showing there's no connection to vaccines. 

Carry keeps up with the "too many too soon" argument, confusing children with dogs and some condition they supposedly get, claiming that since the US gives children more vaccines we must somehow be injuring them. (Except that we don't have a higher rate of autism than countries that vaccinate less often.)  Too many too soon is still an anti-vaccine argument, especially when you don't define which are too many and how often is too soon. The net effect is that parents will vaccinate less "until we know the answers,"  and we'll lose herd immunity on all vaccines. 

Then he tries for the "vaccines are full of poison" argument. He contends that vaccines are full of "aluminum, mercury, ether, formaldehyde and anti-freeze." Ugh. 

Ok, ethyl mercury has been removed from all vaccines except for the flu shot and trace amounts from manufacturing.  Aluminum? I really don't get tired of this one. Hello, you get exposed to so much more aluminum just from eating food. Opponents argue that "yeah, but you don't inject it into your body!" The aluminum in breast milk goes straight into a baby's blood stream from their natural open gut system. Formaldehyde is in our bodies, too. It's in the food we eat. It's everywhere. 

Ok, and ether and antifreeze? Please! There is not antifreeze and ether in vaccines. This part is straight Ace Ventura ass talking. 

For the love of  children, Mr Carry, please go back to making movies. You really are miscast when you try to play Dr Carry, Concern Troll.  Orac is so right when he calls him Fire Marshal Bill. You should his post on this, btw. It's brilliant. 

Fixating on vaccines as cause harms our children. It takes away from real research and it encourages parents to not vaccinate, which increases the risk that all of us will be exposed to vaccine preventable illness. 

Why Jenny Pisses Me Off

First off, she gives an interview to Time which is full of the stupid. She now thinks it's mercury (which her son didn't receive) aluminum (can of soda pop anyone?) and the viruses in vaccines (oooh, you get those when you don't have the vaccine) that cause autism.

Next up?

If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles.

Uh, no. No. I'd rather my son have the autism, thanks. It won't kill him. Plus it's a false choice since, you know, vaccines don't cause autism.

She also thinks that autism is on the rise because schoolteachers (in her opinion) haven't seen so much of it. My autistic cousin got all the way to high school before his MR diagnosis shifted to autism. Perhaps we're just diagnosing differently? Nah, couldn't be. It's not like the rate of kids in special ed has remained relatively constant during this massive "epidemic." Oh wait, it is.

Oh, and she refers to autistic children as shadows. You know, because they don't actually exist as full people? Wha? That's almost as offensive as her co-author's reference to them being soulless and sucking the marrow out of family members. Quit calling my kid a non-being.

But the real cherry on the sundae is her acceptance of diseased and dying children as collateral damage in her war for "safe vaccines."

I do believe sadly it's going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it's their f___ing fault that the diseases are coming back. They're making a product that's s___. If you give us a safe vaccine, we'll use it. It shouldn't be polio versus autism.

It isn't polio versus autism. It's your stupidity versus polio! And there isn't a thing you could do to vaccines that would make them safe in an anti-vaxxer's mind. Not a thing. If you get rid of the mercury (which was done before her son was born), it must be aluminum. Or it must be the frequency. Or it must be the viruses in the vaccines. And if you show them study after study, they'll find a way to refute them as being "biased by big Pharma" or the CDC (since the government is in on the conspiracy.)

In other words, it's an irrational fear that the stabby thing that made my baby cry must also have damaged him in some other way.

I've heard people claim that McCarthy is "getting the word out" or "doing a lot for autism awareness." No. No she isn't. She's doing a lot for autism fear. There's a big difference.

Jenny @#%$@#$#@ ing McCarthy

Gah. So pissed off at her.  She's promoting her latest book, and apparently she thinks it's just fine and dandy that children will die from not being vaccinated. What an awesome attitude. 

It's late, but I feel some T-shirts coming on. 

It pays to Twitter

Because then you find out about things like this:

Jenny McCarthy's Body Count

Been Reading

So, I've been reading The Daily Gonzo, and she's just cracking me up. And making me angry. Not at her, but at my favorite quackery spokesperson, Jenny McCarthy. 

She's brought up Jenny's complete and total salesmanship on this. It's almost irrelevant about whether or not she believes or doesn't believe in what she's selling. She's definitely selling it -- and herself. She's getting paid big bucks for speaking engagements. She's got a "non profit" website that sells crap and sells advertising spots to more places, and she's obviously been coached (or has a good instinct) for how best to market this. Gone are fart jokes, naked photos, and goofy faces. Also gone are any references to "Indigo Moms" or "Crystal Children." Referring to God in new agey terms is out, too. In are "serious faces" and "Gosh, now I'm a mommy so my life is sooo changed" remarks. Out is having a special child, in is having an injured child. Whether or not he's "cured" depends on the day of the week and the direction of the wind, from what I can tell. 

Hey, it's true that being a mommy changes your life, but it's disingenuous to claim your son's autism was caused by the toxins in his vaccine when you  smoked  through pregnancy and went straight to formula.  Also? I find it ironic that she's got a love of injecting herself with diseases. Does she know what botox is? Well, I suppose bacteria is organic. 

Anyway, I'm leaning less on the idea that Jenny really believes this stuff and more on the side that she's found a marketing angle and is playing her audience for fools while relying on mommy sympathy  to deflect criticism. 

Now, I don't think selling yourself for speaking engagements, selling your products, or selling commercial slots on your website is wrong (obviously), but selling quackery you may not even believe in with a carefully crafted image? That. Pisses me off. 

A Decade of Torture

Ok, so last Thursday I went to this presentation, against my better judgement.  

It was just as bad as I thought it would be. And in many ways it was worse. 

They started out with a mom getting up to speak about her experiences with "natural healing" and autism. She talked about how she avoided most pharmaceuticals, and yes, she pronounced the word with derisive italics. She started out by showing a picture of her kid at age two, miserable.  Sensory overload, not having a good time of life, cranky kid.  

She then started treating her for yeast, put her on a casein/gluten free diet, gave her every trendy supplement under the sun including B6 injections. She had alternating diarrhea and constipation, so she got treatments for each extreme. She got chelated for a year. At one point they had her scoped to check for H pylori from some supposed specialist they had to fly to, even though this is something they can check for locally (and much less invasively I might add). And on and on.  

She got a bit teary eyed as she admitted that her now 12 year old was still not "recovered" but don't give up hope! Her 12 year old was not going to sleepovers and making lots of friends, but she was smiling, talking and obsessing about airplanes, probably, as she put it "because she's been on so many of them to see all these specialists." As proof, she presented a picture of her 12 year old smiling. 

The whole thing just pissed me off. What I saw was probably different than what the rest of the audience saw, but what I saw was that this woman had tortured her daughter for ten years with invasive and unnecessary medical procedures. That poor girl. And I'm willing to bet any benefits she thinks she got out of it were just from the passage of time. I'm sure I could find a whole gallery of autistic, miserable 2 year olds that smiled and talked at the age of 12.

And yet, here she was, totally enthusiastic about how awesome naturopathic medicine was. This wasn't an evil woman, and I know she thought she was doing things for the best interest of her child. She clearly spent a lot of money trying to "fix" her, but she's never going to get the results she thinks she wants this way. 

Ok, and I'm not necessarily anti naturopathic medicine. In fact, I have good friends who are naturopaths. I just think you have to really step back and evaluate whether or not you're doing something that even makes sense, or you're going to end up riding the crazy wagon and torturing your kid instead of enjoying them. 

Moved.

So I moved the blog. I really wasn't talking about speech delays anymore, was I? It's all autism all the time, baybee.

IEPs IEPs

It was good, it was bad, it was frustrating, and it was mostly good.

Last week was King's IEP meeting. It lasted a lot longer than I think any of us had anticipated and it went better than I'd hoped for bits.

We have a setup where we take the boy to the university for their language school. He gets his speech therapy there, but other services have to come from the school district. Last year we requested that he get evaluated for OT. We got those results this year. Yeah, that's more than a bit out of compliance for a response. And I'm still a bit pissed about it.

But the results say that he does qualify for OT. We knew this. He can't even dress himself for Pete's sake. Anyway, she also said he's very ready to learn and will incorporate what she demonstrates back into the classroom. Yay. This is a really good sign. Also, she's going to take him out for one on one sessions to avoid distractions in the classroom. I think that's brilliant. She also said he's got the skill level of a 24 month old according to her tests. FTR, he's almost four. ;-/

They actually read his autism evaluation and suggestions for the first time. We gave them a copy much earlier. Did I mention my frustration with the school district? Yeah. Anyway, they read the recommendations and asked about getting an autism specialist on his team. Ya think? His preschool director also wants to involve the university to see if he qualifies for any studies (since those usually involve funding and more therapy than we would otherwise receive.) I'm all over that plan.

We went over his strengths - letters and numbers, increasing receptive skills, better focus, etc. Yay. And then the bad part, his weaknesses. I had to admit that his functional communication skills really hadn't improved. He says the words he says more clearly, but he's still not saying that many words to do anything other than label objects. He does have his moments, so here's to hoping that those moments increase.

His preschool director said she'd left an AAC device in the class and given him some opportunity to play with it to see if it would help at all. He used it to ask for a snack, which is good, but then when other kids started playing with it, he started hitting the "no" button repeatedly. Even better.

The end goal is still going to be spoken communication, but if an AAC device bridges the gap, I'm all over that.

I requested cognitive testing if it were possible, but we decided that maybe waiting another year would be better to really get a good picture. I wanted a baseline, but I didn't want a test that relied on his communication ability to see what's going on in his head, and I know that's going to be hard to find.

They also initially had him listed as being dairy free for the treatment of autism. We corrected them that he was dairy free for the treatment of foul smelling farts from hell, but if it improved his behavior, yay for us. They all seemed to think he was much more focused since we'd eliminated dairy from his diet, but it's hard to tell if that's just confirmation bias. The stinky farts are not imaginary, so yay to be rid of those.

Apple, yes, plum, orange

The latest echololia. It took me a bit to realize he was saying "plum" and not "mom." So we'd have these conversations:

K: Apple
Me: You want an apple?
K: Yes. Mom.
Me: Good talking! I'll go get you an apple
K: Orange.

Heh, It took me a bit to realize that they were just a list of words, too. He's got a hand motion that goes with it, like he's packing things. It goes with his absolute love of the letter P and of the Fun With Phonics DVD, from what I can tell. About halfway through, when they pack for the picnic. You'll see what I mean.

And also related to his love of the letter P, he spontaneously picked up Hop on Pop and started reading the words hop and pop. He won't let me open the book. He insists on carrying the book over and trying to prop it up on a computer monitor, where it falls over, but he sounds out the words on it.

I think this may end up being part of a theme at some point. Thanks Wordle.

The Media Is Not Your Friend

Ugh. My Google Reader has a news feed for stories on autism. After reading this one, I'm now totally depressed, since the article is warning me that my son is going to suddenly die from a seizure disorder, get raped, and then drown after committing some other act of self injury.

I think I need to put a positive story filter on my reader or something.

Reminder

Last night was the Halloween-that-can't-be-called-Halloween party at the school. I hate it when fully secularized holidays get the PC treatment. Anyway, we saw the girl's old preschool classmate. He's severely affected. He's nonverbal and isn't using his communication device that well, either. He spent the entire time stimming and looking away from everyone. Princess tried to say hi, but he plainly didn't recognize her. Very frustrating for everyone involved.

Anyway, his parents told me they'd read Jenny's diet, and it was just doing wonders for him. Maybe there is a change, and I just can't see it, but Jenny was certainly not curing him.

Two words with purpose

Woo! The boy caught a conversation we were having with the girl and understood it. We wanted her to go take a bath. He said her name and then bath. Twice. He clearly understood what she was doing, and he managed to articulate the concept. Yay for communication!

No Fragile X

We had the boy tested to rule out Fragile X. They sent the sample to the wrong lab, so we thought we wouldn't get the results. I guess they caught their mistake after all. We got them anyway, and they're negative. So yay.

And in all that naval gazing that I suppose goes on when your son gets a diagnosis for something like autism, my mom and I have mentally diagnosed my brother with Aspergers. He has some quirky speech patterns. He had behavioral problems in school. He was diagnosed with ADHD, which is a classic misdiagnosis for kids on the spectrum. He's always had a love for machinery, mechanical objects, electronics, etc. Does he have it? Eh, it doesn't much matter. He's who he is, and he's able to live without supports. But it does explain a lot.

Autism conference

It was good. I'm glad I went.

Yesterday's keynote speaker has autism himself and wrote tons of books on the subject. He was an amazing presenter and really engaged the audience. I had to catch the bus, or I'd have bought Autism for Dummies and Beyond the Wall for him to autograph. I'll probably buy them from Amazon later, but I'm still digesting 1001 Great Ideas right now.

Today's speakers included a morning panel with the developmental pediatrician who was part of the team that diagnosed my son and two other professionals on the state autism task force. The lunch session was presented by someone who wrote a book on career paths for people with Aspergers. The career info is a little too early yet, and the diagnostic info a bit too late. And when they talked about HCBS waiver services for the state, it was a bit frustrating, since I know those services aren't funded this year. Lunch conversation was really engaging, and I wish we'd had more time to just talk.

The last speakers were two of the three board of director members of ASAN. They did a good job presenting, even though the whole conference was running late from lunch, and they had some very valid points, but they also ran into the problem of coming off as a little adversarial to parents when describing their anti-cure stance. They were in one breath saying "don't cure us," and in another saying, "we need appropriate treatment." And that's confusing for parents to hear, especially if they confuse the terms "treatment" and "cure."

It's also not evil to wish you could make autism go away for your child. It's a healthy parental wish that you could make your child's life easier, especially if you're watching them get bullied in school. But, as I've said before, it's just not realistic to think that will ever happen.

I think they were just trying to say that parents could spend a year teaching their child to tie their shoes, or they could buy velcro shoes and spend that year teaching them social skills, and we all have to pick our battles and set realistic goals. Most of us would probably agree on that. Unless we're Jenny McCarthy.

I, once again, had to run to go catch the bus, so I missed the closing statements, but I'm fairly sure nobody ended up pulling out a knife. ;-)

A few good points that they brought up in the last panel:

• By the time your kid reaches high school, they should be participating in IEP meetings, not just sitting in them. They need to learn how to self advocate.
• Colleges need social and executive skills classes, not just accommodations for academic issues like quiet rooms for tests.
• People need to think about adults with autism, not just children.
• Give alternate IQ tests that don't focus on verbal communication.
  

I wrote down the name for an IQ test, but I'm lazy and not sitting next to my notes. I'll have to transcribe it before I lose the ability to decipher my handwriting. I'd like to ask them about it at my son's IEP meeting, since IQ monitoring was one of his recommendations.

Magical thinking

I was reading this study, and it went a long way to explain the Jenny McCarthy branch of autism parenting. Basically the theory is that the more out of control your life is, the more likely you are to see patterns when none are there and believe irrational things.

Our brain doesn't like situations that leave us out of control, so we're more likely to jump to conclusions without evidence and engage in ineffective rituals to create order where none exists. When your child is diagnosed with an incurable condition, and this is the sort of thing you see? Oh yeah, you need some magic.

I remember seeing that video before Mr K got his diagnosis, and it scared the bejeezus out of me. I remember thinking how glad I was that all he had was a little speech delay. Um, oops. While there's a lot of truth in the emotions and the feelings those mothers have, I don't think it's the whole story. I still have hope that at the end of this parenting thing, I'll have an adult who manages to make his own way in the world.

At any rate, I've tried my best to substantiate any suggestions before I go off and try some crazy Jenny McCarthy "cure." It's not that I don't think she believes she cured him, it's just that there seems to be a simpler explanation to what he had in the first place.

Reason #1232 why my son is awesome

Giggles.

Teaching a nonverbal kid to read

Mr K is an interesting boy. Although he's not particularly verbal, he is very interested in letters and numbers.

He can count to at least twenty. I'm sure he can count higher, but we haven't tested him on this. He knows all his letters, and he knows the sounds they make. He can even sign them all. If you show him the alphabet, he gets excited and points and labels all the letters for you.

So the next step, as suggested by his preschool teacher, is to get him to read. If he can read and articulate the letter sounds, eventually he can articulate sounds in verbal speech. It's backwards from the way most kids go about it, but you have to play to a kid's strengths.