1 in 68. 2 of 2.

If you are an autism parent, I'm sure you saw the massive social media frenzy with yesterday's announcement from the CDC. Their new rates of autism are 1 in 68.

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Well, sort of.

The numbers were accurate 4 years ago.

If you were 8 years old.

And, if you lived in 1 of 11 test site areas.

The rest of us out there were not included in those numbers. Like my boys (who were too young). And like my entire State (which was not one of the test sites).

The whole thing makes me want to puke. Seriously.

I was in a craptastic mood because of the latest and greatest "news" from the CDC and was being fairly vocal about it online when one of my Facebook friends asked me why I was upset.

For SO MANY reasons!

As I told her, it's isn't just about the CDC "math". They obviously need a larger sample size for the analysis to be of any actual value. This 1 in 68 business is just fluff. We need the REAL, CURRENT numbers!

As you know, I have 2 boys diagnosed on the spectrum. Through my nonprofit work I know hundreds upon hundreds of affected children and families that are LOCAL in my area.

In fact, a mom I know said that a classroom in her school has an incidence rate of 1 in every 5 kids in one grade. 1 in 5! And, the next grade is about 1 in every 10 kids. 1 in 10! This is only 2 grades in 1 elementary school, and there are that many kids with autism.

Does this not shock anyone?

Or, shall I say, does this not shock anyone that doesn't already have a kid with autism?

It's safe for me to say that in our local area, the average across schools is approximately 1 kid with autism in every classroom, and likely there are even more than that. This is just my own observation based upon what I know about the area, but I can tell you that my half-assed estimate is far more realistic than the CDC's numbers.

Once again, things are swept under the rug and autism families continue to struggle. Middle class autism families are often in huge crisis all the time. They can't afford therapies because they are too poor (and our State still refuses to mandate autism coverage) and they don't qualify for help from the government because they're too rich. That's a freaking joke. Too rich. Most of these families are single-income because autism can be so all-consuming.

These kids slip through the cracks, they don't get the interventions and education they need, the parents are stressed to the max, some of those marriages fall apart, and the cycle of crisis continues on.

More kids get diagnosed every single day. I meet new families almost all the time. It keeps getting worse.

When will enough be enough?

When will the rate of autism be so shocking to the entire nation that sweeping change and action will be demanded? Does it have to get to 1 in every 5 kids? It may already be in some areas. Or, does it have to be a 100% incidence rate, like it already is with my boys?

Legal priorities in WA: Is this an April Fool's Day prank?

I'm having a nausea-inducing sense of deja vu right now, and I wonder if I'm somehow getting punked on April Fool's Day (a.k.a. the first day of Autism Awareness Month). Beware, because a rant is a' comin'...

Scheduled today in my state's capitol of Olympia, Washington, is a Senate Health Care Committee hearing to discuss an abortion mandate, known as the "Reproductive Parity Act."

This is the same exact type of Senate hearing that I testified at when I was working to enact "Autism Insurance Parity" in the State of Washington. Shayan's Law, as it was commonly known, never saw the light of day because it got shut down by the Health Care Committee every time it was presented.

We had a HUGE grassroots effort, and it was standing room only at our particular Senate hearing. Autism families and our various supporters joined together for rallies at the capitol. Hundreds of us were knocking on the doors of our legislators' offices, scheduling meetings with them, sending emails, and making phone calls to voice our opinion about the importance of autism insurance parity for Washington.

For what?

Nothing.

Autism doesn't matter enough to the law makers in Washington State to do anything about providing mandates for coverage like so many other states in our country have already done.

It appears now that abortions could be more important than autism.

Pardon me while I vomit.

The fight for autism continues. Small strides are being taken through the work of some dedicated attorneys and an organization that is working to sue every insurance company that operates in Washington State, until autism coverage is mandated for everyone. God bless them for continuing the carry the torch of autism for all of us!

And, they are winning!

People are starting to get coverage for necessary autism therapies in drips and drabs. Unfortunately, my family's insurance company has not entered the court room yet, but their day is coming. I only wish it would come faster!



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Until then, my kids will continue to be denied coverage, and we will continue to not get the therapies they need so much, all due to the fact that we are not wealthy enough to pay for it all out of our own pocket.

It is SO WRONG.

It saddens me to think that abortion mandates are more important than autism mandates. Our kids with autism need help. Families are suffering under the financial burden of autism. Children are not getting services that could help them in both the short and long-term. The people who could enact meaningful change that would better the lives of so many of our state's citizens choose not to.

This is not what I consider to be a good start to Autism Awareness Month.


(Please note: This is my opinion about the importance of one issue over another, and I am entitled to feel the way I feel. Negative comments that seek to engage me or any of my readers in a bitter political debate are not welcome.) 

Preach it, Holly!

After being away from the computer most of yesterday, I found a quiet moment to check back in on all things social media. In my news feeds I immediately saw a lot of chatter from my autism friends about Holly Robinson Peete and 50 Cent. As they are both quite famous for very different reasons, I was intrigued and read on.

On Twitter, 50 Cent had apparently insulted someone that tweeted him by telling this person that he looked autistic. This ignorant quip had the ill-intended effect of the "R" word. Then, 50 Cent followed it up with another comment mentioning special ed. Of course, I was disgusted.

But, I gotta tell ya something. Autism parents are a fiesty bunch! As I was reading about this fiasco, I was thinking about how I could write a very spirited blog post without making him want to get a restraining order against me.

However, I saw that Holly Robinson Peete was leading the charge. I read her letter to 50 Cent and I have to say that she did a first rate, bang up job. I could not have written it any better myself! She was appropriate, informed and powerful. It's all the more reason to like her!

Holly, thank you from the bottom of my heart for representing the autism community so well. It is efforts like these that can help make change in the hearts of people everywhere.

To read the letter Holly Robinson Peete wrote to 50 Cent, click here.

To read a post from Lisa Ackerman of TACA about this, click here.

To read a post about the incident over at Strollerderby, click here.

Oh, and if by some miracle 50 Cent is reading this post, I have something I'd like to share with you...

50, this is what autism looks like in my boys. And, if I do say so myself, it looks damn handsome.

Photography by Dana Napoleon

Rant complete.

Happy Independence Day!

   

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

World Autism Awareness Day 2012

Today is World Autism Awareness Day. Originally I was going to post a response to the comments from my post last Friday, “Autism epidemic, anyone?” That follow up post has taken on a life of its own. It’s gotten much bigger than I expected, and I’m still not done writing it. So, I thought I would take a portion of it and break it down a bit, and then I’ll post the rest of it in the next day or two.

Since today is a significant day in the autism community, I thought I should go along the awareness vein and share som very pertinent and timely information that I learned from a friend of mine, Marcella Piper-Terry. She is an independent researcher and has a firm grasp on statistics. She started crunching some numbers related to the autism prevalence and tried to bring those numbers into the present day (since the numbers the CDC released are OLD and out-of-date). See my last blog post for the full explanation of why the CDC’s numbers are old and not very relevant for us today.

What Marcella came up with was shocking. I have no way to verify her numbers, but I appreciate her taking the time to try to make some sense out of things for the rest of us. Regardless, her numbers have much more value to me than what the CDC presented last week.

There was a lot of shock surrounding the increase of autism to 1 in 88. Well, that may be so, but how shocked will you be when you know what the current number is? Keep in mind, Marcella could only go forward with the trends already established. The CDC does not use a population-based model. It is a scattered, incomplete pool of data. If we had more complete numbers that were more representative of the population, I know in my heart that even the numbers Marcella came up with are VERY conservative. The sheer enormity of that, my friends, is what we should be shocked by.

The following are her numbers and her words as she describes them: 

The CDC says the rate of autism is 1 in 88. That number is four years old and is calculated for children who were 8 years old in 2008. The number reflects a 78% increase over the 1 in 150 number that was from 2002 (announced in 2007). Dividing 78% (rate of increase) by 6 (number of years from 2002 to 2008) we get a yearly increase of 13%. This allows us to calculate (approximately) the true rate of autism for 8 year olds in 2012. Using the same 13% per year increase we can extrapolate out five years and figure the approximate true rate of autism for children who are now between 3 and 8 years of age. This photo album contains my chicken scratch notes as I performed these calculations.

Long numbers. I didn't round off anything because I wanted to be completely exact in my calculations. This started out to be just a little exploration, but soon became one of those "Oh, My God... I have to finish this" things. That's why it gets more organized toward the end.

I started with the 1 in 88 number, calculated for 8 year-olds in 2008. This equals 1.14%. The 78% increase over the 1 in 150 number (from 2002) is divided by six (number of years from 2002 to 2008) for an average yearly increase of 13%.

Calculating the yearly increase yields the following:
1 in 78 (2009)
1 in 69 (2010)
1 in 61 (2011)

These numbers are for 8 year-olds diagnosed with autism.
The current number for 8 year-old diagnosed with autism is estimated to be 1 in 54.

Current rates (2012) for children who are less than 8 years old:
1 in 48 for 7 year olds;
1 in 42 for 6 year olds;
1 in 37 for 5 year olds;
1 in 33 for 4 year olds;
1 in 29 for 3 year olds.in 29 for 3 year olds.

Are you scared yet?
Here is something else to think about...
The rate of increase used to calculate these statistics is based on CDC data gathered in 2008. That was before the 2009 H1N1 scare. These numbers are based on the real-world scenario BEFORE the push for the flu vaccine for pregnant women and infants beginning at six months of age. That means that even as ghastly as these numbers are, they are underestimates of the true magnitude of this crisis.

Extrapolating out for the next ten years:
2013 = 1 in 26;
2014 = 1 in 23;
2015 = 1 in 20;
2016 = 1 in 18;
2017 = 1 in 16;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.6;
2018 = 1 in 14;
2019 = 1 in 12;
2020 = 1 in 11;
2021 = 1 in 10;
2022 = 1 in 9.

I encourage you to look up my friend Marcella Piper-Terry on Facebook and visit her website. She is a force, and she is much more knowledgeable on topics related to autism than I am.

As part of launching Autism Awareness Month and recognizing that today is World Autism Awareness Day, I will share with you one of my favorite slogans about autism. In fact, I purchased a button with this saying and I wear it during the month of April.

April is Autism Awareness Month. Every day is Autism Awareness Day in our home.    

I support Autism Awareness, but I would like to think that we are becoming more aware of autism. The big question mark of “what do we do now that we’re aware of autism” makes me further endorse April as Autism Action Month. We need to act on behalf of our children. 

My friend Cari from Bubble Gum on My Shoe took it a step further and made a t-shirt that says:

My kid has autism. Yours is next.

She’s right. We cannot sit back and do nothing.

I encourage you to speak with your legislators about autism. Share your story. Find autism organizations that are making meaningful contributions to your community and support them. Connect with other autism parents online and locally through support groups. We are each other’s best resource. Let’s act together and try to create positive change for our kids.  

Autism epidemic, anyone?

From Reuters, “About one in 88 children in the United States has autism or a related disorder, the highest estimate to date and one that is sure to revive a national argument over how the condition is diagnosed and treated. The estimate released on Thursday by the Centers for Disease Control and Prevention represents an overall increase of about 25 percent since the last analysis in 2006 and a near-doubling of the rate reported in 2002. Among boys, the rate of autism spectrum disorders is one in 54, almost five times that of girls, in whom the rate is one in 252.”

Earlier this month I was preparing for the new autism numbers from the CDC to drop. In anticipation of how bad the new autism prevalence could be, I began to wonder at what moment the world would finally see autism as a medical epidemic.

We all remember how quickly everyone got on board in dealing with the supposed pandemics of bird flu and swine flu. The whole world seemed to be talking about the flu and quickly mobilizing to deal with the perceived problem.

Well, where the hell is the concern over autism? The only people I ever hear talking about autism are autism parents. I hardly ever hear or see feedback from anyone else. Autism parents aren’t vocal because we want to be, or because we like to talk about autism. It’s because we have to be. We are fighting for our kids AND we are fighting for your kids.

I guarantee that those who think autism will never touch their life have another thing coming. It will cross their path at some point. So, we better all open our eyes and recognize that there is a problem.

When is an epidemic really an epidemic? When will the public at large wake up from their ignorant slumber? What does the incidence rate of autism need to be before we see national and global change to combat this epidemic? Does it need to be 1 out of every 10 kids? We are headed there quickly.  

The thing that frustrates me the most is that the “new” CDC data and the subsequent “new” rates generated from that data is NOT NEW AT ALL! The data is OLD!

The study was conducted in 2008 (yes, that is 4 YEARS AGO!) on what were then 8-year olds. Those children were born in 2000 and are now 12 years old. As a result, almost none of the children I know on the spectrum (including my own boys) are included in that data set.

Want to know something else about that? My children wouldn’t have been included in the data anyway. Want to know why? Because they only collected data from 14 locations across the US! And, none of those locations were in my state.

Is it just me, or is it insanely tragic that the CDC is reporting “new” data that is horribly out of date from just a small handful of locations?

This does not sit well with me.

When I saw Facebook go full tilt yesterday with all of the articles and stories about the new autism numbers and the links and comments from all of my autism mommy friends, I started feeling more and more depressed about it. I actually had to turn off my computer and walk away because I couldn’t take it anymore. I did not expect to react that way. I mean, this is not a shock to me or to any parent of a child with autism. We all know in our hearts that the numbers are hideously underreported. I see a higher prevalence of autism in my own zip code for crying out loud! 

So at this point, instead of continuing my rant and getting more upset, I will focus on some selected quotes from some articles I read yesterday about this “new” data. Check out the articles and let me know how you feel about the CDC’s announcement.

From ABC News:  “The data was collected by The Autism and Developmental Disabilities Monitoring network, an organization funded by the CDC to track autism rates. For this report, the ADDM reviewed medical records of 8-year-old children from 14 different areas across the country. The study focused specifically on 8-year-olds because most autism spectrum diagnoses are made by the time a child reaches their eighth birthday.”

“The CDC study released Thursday is considered the most comprehensive U.S. investigation of autism prevalence to date. Researchers gathered data from areas in 14 states - Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin. They looked specifically at 8-year-old children because most autism is diagnosed by that age. They checked health and school records to see which children met the criteria for autism, even if they hadn't been formally diagnosed. Then, the researchers calculated how common autism was in each place and overall.”

So, they are only looking at SOME records of SOME 8-year olds in a FEW scattered places. We need to seriously consider doing some research like they did in South Korea that was population based and reflected an incidence rate of 1 out of 38. I would venture to say that their study is more indicative of what the true number could be here in the US.

From Reuters:  “CDC investigators warned, however, that the 14 sites are not ‘nationally representative.’ As a result, the rate of autism being reported on Thursday in CDC's Morbidity and Mortality Weekly Report, ‘should not be generalized to the United States as a whole,’ they wrote.”

You got that right. The rates are probably much higher!
 

“Scientists had long estimated that 90 percent of autism risk was genes and 10 percent reflected environmental factors. But a 2011 study of twins by scientists at Stanford University concluded that genes account for 38 percent of autism risk and environmental factors 62 percent.”

Um, duh. Most of us parents have known this for years, since a majority of us do not have autism anywhere in our families.

From the Associated Press:  “The study also found that autism disorders were almost five times more common in boys. And that an increasingly large proportion of children with autism have IQs of 85 or higher - a finding that contradicts a past assumption that most autistic kids had IQs of 70 or lower.”

And now for the exceedingly annoying quotes...

From USA Today: “A professional group is now considering changing the diagnosis of autism spectrum disorders, eliminating some people on the milder end. If the formal definition is changed next year, the rate of autism will certainly fall, experts said.”

DO NOT GET ME STARTED on this quote. Don’t you just LOVE the idea that they can get rid of the autism epidemic by changing the criteria and eliminating some of those higher-functioning kids right off the spectrum? Grrrr…

From ABC News:  Dr. Isabelle Rapin, professor of pediatrics and neurology at the Albert Einstein College of Medicine said, “Not only physicians, but parents, teachers, therapists and the public are much more aware of the symptoms of autism, and I suspect some may apply the diagnosis based on one symptom, which is inadequate.”

Oh, good Lord. The things I could say about this quote. What I will say is that diagnosing professionals (pediatricians, neurologists, psychologists, etc.) have to follow the DSM IV criteria. If the proper criteria are not met, the child does not have autism. Period. To say that professionals are handing out autism diagnoses like lollipops is preposterous to me. Autism cannot be diagnosed based on one symptom. Anyone who does this is not a reputable and should be held accountable for medical malpractice. To allude that this is commonplace is just ludicrous.

From CNN:  Mark Roithmayr, president of the advocacy group Autism Speaks, says more children are being diagnosed with autism because of “better diagnosis, broader diagnosis, better awareness, and roughly 50% of ‘We don't know.’”

Uh huh. Better and broader diagnosis? Nope! The diagnostic criteria HASN’T CHANGED IN YEARS because the DSM IV hasn’t changed in years! The DSM IV was published in 1994 (with a revised edition published in 2000). We have had the same version for diagnosing children for 18 years! Doctors should know this manual inside and out by now. I cannot see how this is an issue, unless we have a huge pool of rogue diagnosticians making up their own criteria for autism (see quote above from Dr. Isabelle Rapin).

Then, there is the matter of this 50% that “we don’t know.” I will admit that there is a lot that we don’t understand about autism, but more children are being diagnosed with autism because more kids have autism! It’s not a diagnostic anomaly. It’s not a genetics thing. The huge increases seen in autism rates cannot be accounted for by genetics or better diagnostics.

Our kids are sick. And, not just neurologically sick. Most of them have significant medical complications that accompany their autism diagnosis. We have a systemic problem that crosses all boundaries, demographics, classes, races, and locales.

I know that there are many more kids with autism than the CDC will admit to, or can even begin to account for with their current reporting methods. We’ll just have to sit back and wait for them to report on today’s kids…years from now.  I wonder what the autism rates will be when they catch up to my kids? I shudder to think of it.

Want to know what the autism rate is at my house? 2 out of 2. 100% of my children have autism. And, that’s all I need to know.

New autism prevalence numbers

Did you hear that the CDC is going to share their latest numbers on the prevalence of autism in the United States? The last time they released autism rates was in 2009, so an update is certainly due.

I read about this in an article from Disability Scoop, dated March 9, 2012. The snarky side of me wants to take bets on the day they will release the numbers, as well as what the actual numbers will be. Care to make a friendly wager?

Will the CDC release the new numbers in time for World Autism Awareness Day?
Or, will they mention it in some teeny byline on Tax Day (or some other newsworthy day), thereby diverting attention from the brand new statistic?

Will the CDC’s numbers show a significant increase, more closely mirroring the study done in South Korea that found an autism rate of 1 out of every 38 children?
I think it would be nearly impossible for the numbers to be “better” than they were. I keep hearing of new cases in my community almost every day and I have to believe that this is happening everywhere else, too.

What I really want to know is:
How high must the prevalence be in order to warrant a state of alarm across the United States?

When will people wake up to the epidemic of autism and see it for the burgeoning issue that it is?
Autism affects those with the diagnosis, their parents and families who care for them, the doctors who diagnose them, the professionals who treat them, the teachers who teach them, and the list goes on and on… 

When will every State enact legislative change in order to help this exploding population?
Here in Washington, we are still waiting for the right to not be subjected to medical insurance discrimination. Some day we will catch up with other States that have figured out that medically-relevant therapies are not only helpful, but necessary for those with autism.

Any parent of a child with autism can tell you that it is truly a life-changing experience to have a child diagnosed with autism. (In my case, more than one child!) Your life is different than you imagined it would be. It’s definitely not typical. It can be absolutely beautiful in unexpected ways, yet it remains a difficult journey for both you and your child. It really is a spectrum of experiences, with each one unique.

I’ll leave you with a quote that a Facebook friend of mine shared (which I immediately stole for my own profile after I read it!):

If 1 out of 91 children were being kidnapped, we’d have a national emergency.
We do. It’s called Autism.

When will the prevalence of autism become a national emergency?
I’m still waiting for that day… 

Getting rich off an autism diagnosis

Doesn't the very idea of getting rich off of your child's autism diagnosis seem laughable? I mean, if there was a way to turn autism into a profitable enterprise, I would definitely be living on easy street with 2 boys diagnosed on the spectrum. The whole notion is absolutely ridiculous. Crazy. Cuckoo. Ludicrous. Insane.

Well, imagine my surprise when I saw a post in my Facebook feed yesterday that was titled, "Attorney Claims Autism Parents Are Just In It for the SSI Gravytrain." Say what? Come again? An SSI Gravytrain? Wow, if only I had known!!!

Give me a (insert your favorite expletive here) break.

Intrigued, I clicked on the link. And then my jaw hit the floor. At first I thought maybe it was a joke. When I realized it wasn't, I started getting angry.

The post linked above talks about an article from the The Los Angeles Times, as part of a series on autism. The focus of my shock and dismay was a comment posted by a reader in reply to the article. It reads:

"Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare.

The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this "epidemic." Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.

When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.

I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.

Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism."

Okay...whoa! Did she just equate autism with retardation? Did she just say that autism is every parent's dream ticket to government support? Did she say there is a great deal of funding for autism? Holy crap. Did I just step into the Twilight Zone here?

Let's just get one thing out of the way first. Autism is NOT automatically synonymous with any sort of intellectual disability. A majority of children on the spectrum are of average intelligence or even above average. This kind of comment proves to me how very uneducated she is about autism.

Moving on to the laughable portion of the comment...seeking an autism diagnosis in order to get a government handout. Are you kidding me? And, I'm dying to know where all the money is that she's speaking about. In my beautiful State of Washington, when you go through and file disability paperwork through the proper department, I've heard the wait can be anywhere from 3 to 8 years. Yes, that's right. Three to eight years! Oh, and our family doesn't qualify, by the way. We don't have a "classic" autism diagnosis. We're not the only ones. Lots of people I know are not able to qualify their children even though they could use some help.

My State is desperately underfunded and unable to keep up with the increasing needs. We are facing a huge crisis here due to lack of funding and lack of legislation. In Washington, autism is still a diagnosis that is widely discriminated against by insurance companies. This creates a major financial dilemma for families who are trying to care for affected children with proper medical interventions. An autism diagnosis is definitely NOT the golden ticket. If it is elsewhere (by some miracle), maybe I should move!

I guess the whole point of me bringing this up today is that comments like these prove how much education still needs to be done about autism. The woman who made these insensitive and clearly ignorant comments just doesn't get it (and probably doesn't want to get it, as far as I can tell).

Those of us in the autism community are very "aware." We obviously don't need Autism Awareness Month in April to remind us of our daily experience. Besides, talking about autism all of the time can be exhausting, and at a certain point it can become a worn out topic. But, we still have a big job to do.

The world needs to know what we go through. The world needs to know what our kids go through. The world needs to know that we have a big problem on our hands as this generation of affected children is quickly growing into adults. The world is not ready for them yet. Our kids need to have the best possible chance to succeed, and I guarantee we are NOT doing enough right now to help them. I see gaping holes in proper services and interventions every day. My hope and my dream is that all of this will change...before my boys are all grown up.   

*One last note - a disclamier of sorts:
I thought I should let you know that I saw the link to this post from the Facebook page for the Thinking Person's Guide to Autism. I requested permission to post about this article but did not receive any direct communication back via email or Facebook comment reply. Because I felt so strongly about the topic, I thought I would go ahead and write up my post. I hope that they are okay with me doing so.

I sincerely encourage you to not only visit their Facebook page, but please read the article referenced above in its entirety. It gives a lot more information that is worth the extra time.

Please share your thoughts about this in the comments! Am I the only one who is gobsmacked by this woman's comments?   

Sorry, doctor. You're wrong.

I was doing some shopping at my local vitamin and supplement store when a lady looking at children’s vitamins noticed me quickly placing some products in my basket. She watched me for a minute and then asked if I could recommend some vitamins for her son. I looked over and saw a young boy sprawled out flat on his belly quietly playing with a car a couple feet away from his mom. I asked the mom some specific questions to try to learn about her situation so that maybe I could provide some guidance.

I learned that her 4-year old son was not eating. The mom was grasping at straws to get some sort of nutrition into his body. When he chose to eat, his diet was extremely limited – full of wheat and dairy. Sound familiar? He was also not communicating verbally with much success. The alarm bells were very loud in my head as she shared more with me. While she was talking, I glanced at him occasionally and watched him play with his car on the floor. He was passively listening, only trying to speak or use crude sign language when prompted by his mom. He wouldn’t communicate directly with me, instead using his mom as a translator for his very special hybridized language of Spanish, sign, and English.  

I began to share a bit about my boys and their journey since we learned about autism and their food allergies. The lights seemed to be turning on in her head. She knew there was something going on with her son. It was very obvious to me also, and I had just met him.

This mom had done everything right. She was seeking high-quality supplements to try to help her son avoid vitamin deficiencies from his lack of food intake. She told me his hearing was fine, but he wasn’t picking up speech as he should at the age of 4. Even his own father has great difficulty understanding him.

She told me that she had taken her son to the doctor to discuss her concerns about his lack of speech development and his daily refusals to eat. The doctor told her to not worry about the food thing and that he would talk eventually. His advice was to just give it some more time.  

OMFG! In my head I am going freaking nuts when I hear her say those words. I’m concocting an imaginary plan to go visit this excuse for a doctor and scream obscenities at him.

Give him some more time? He’s four! Obviously something is wrong. Hellloooo! So, the mom should just wait until he enters kindergarten and the teacher has a heart attack when she realizes how delayed this child is? That would be a huge disservice to the child, his family, and his future teachers.

I felt awful for this mom. I was her not that long ago. I had blind faith in our doctors. I heard those same words when I brought my son's delays to his attention. Oh, just give him some time. Boys are slower to develop speech. It will be okay. 



Don't forget...doctors are always right! Especially about cigarettes!

NO! No, it’s not okay! He doesn’t need more time! He needs help! NOW! The wait and see attitude infuriates me to no end. And, now that I have the clarity of 20/20 hindsight, I can almost taste my fury when I hear those same words again.    

Unfortunately, I listened to our doctor longer than I should have and I lost precious time that I will never get back. I finally figured out that I was getting nowhere fast and that I needed to take control of our situation. And I did. And my boys are better for it. I shudder to think where we would be if I had continued to wait per the doctor’s recommendation. It makes me cringe just thinking about it.

I spoke with the mom about food allergies. I also told her about free developmental assessments available in her school district. She was floored that such a service exists. I didn’t specifically tell her to pursue an autism diagnosis for her son, but I mentioned how my boys did many similar things at the same age. And, I used the word autism a lot. I feel very confident that this mom will call the school district to get an assessment for her son. I’m about 99.9% sure that they will find areas of delay and that he will qualify for developmental preschool. I have no doubt. A proper diagnosis will hopefully come in time, but the first priority is getting this kid assessed and qualified for a specialized education.

I gave her my card and asked her to keep in touch with me. I am very interested to see the outcome for this precious boy. I can only hope and pray that he gets the help he needs and deserves. Lord knows his doctor didn’t help him one bit with his ignorant remark. Jerk. Thank God this mom followed her instinct. 

Despite my hurry that day, I am so glad that I chose to take those few minutes to talk with that mom. I can only hope that a seed was planted and that positive changes are on the horizon for her son.  

Moms, you have a wonderful gift of intuition. You know your child. Don’t accept the garbage you are fed if there is any shred of doubt in your heart. Do what you do best and seek the answers for your child. You, like all of us mother warriors, are smarter than your doctor when it comes to your child. Trust yourself.

I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too?

Environment is a top suspect in autism

Finally! And perfect timing, too. The National Institute of Mental Health dropped a bomb about autism on a national holiday. How convenient. When most of us were having picnics and spending time with family in preparation for Independence Day fireworks, the NIMH decided to quietly “surprise” the public with the fact that the environment is now considered a main causation of autism, more than genetics.

I think the Managing Editor of Age of Autism said it best:
Autism affects upward of 1% of American kids today. There "is no cure." There is no test. There is precious little hope for treatment in mainstream medicine. It's a crisis for America the likes of which we have never seen. And so the NIMH puts out a press release ON A NATIONAL HOLIDAY. Meanwhile, how many of our kids are cowering under a bed right now instead of reveling in the fireworks and family celebrations because of their autism? And what does THEIR independence look like tomorrow?

From The New York Times: The new study marked an important shift in thinking about the causes of autism, which is now thought to affect at least 1 percent of the population in the developed world. “This is a very significant study because it confirms that genetic factors are involved in the cause of the disorder,” said Dr. Peter Szatmari, a leading autism researcher. There has been growing acceptance that genes do not tell the whole story, in part because autism rates appear to have increased far faster than our genes can evolve.

From the San Francisco Chronicle:
Environmental factors play a more important role in causing autism than previously assumed and, surprisingly, an even larger role than genetics, according to a new study out of UCSF and Stanford that could force a dramatic swing in the focus of research into the developmental disorder.

Does this come as a surprise to anyone? Anyone? Anyone? Bueller? Heck, no! Apparently the scientists were surprised. ((insert sarcastic “DUH!” here))

Parents like me have been saying the environment is a problem for years. I can’t think of a single parent of a child with autism (and trust me, I know a lot of them!) that believes their child’s autism is purely genetic. Most believe that the environment is the culprit. If it was not the reason, than it was one of the top reasons. I believe this to be true in my own family with both of my sons.

My own personal opinion is shared by many others: genetics loads the gun and the environment pulls the trigger. I definitely think there is something to be said about genetic susceptibility and environmental assaults adding to toxic load, ultimately leading to an autism diagnosis. I wrote about this and other things when I reviewed Jenny McCarthy’s book, Mother Warriors. Here’s a little snippet from that post:

The way I like to think about autism is that our kids each have a row of dominoes stacked just so, with each one a possible trigger or tipping point. There are many dominoes, and each domino on their own is seemingly insignificant, such as: allergies, reflux, eczema, ear infections, diarrhea, food intolerances, asthma, chemicals in the home, pesticides on our food, heavy metals exposure, fluoride and chlorine in our water, candida overgrowth, the vaccine schedule, genetic predisposition, etc. The list seems to be endless and I have by no means included everything that could ultimately be involved. When one or more of these dominoes gets bumped and the dominoes are close enough together for the bump to make an impact, I believe it triggers the cascading fall into autism. The sum of all of the parts equates to a life-changing diagnosis.

As a parent, studies like this have 2 sides. First, they are extremely gratifying. They prove that the hardcore parents who research endlessly for ways to treat and help their children with autism are not the crazed lunatics they are made out to be. In most cases, the medical system has failed them. The parents keep vigil on behalf of their children, paving new roads for their care because no one else will, and yet they’re made out to be a villain for doing so because it goes against the grain. We are justified. Our choices are sound. In fact, we were right all along!

Second, the other side is that studies like this are extremely frustrating. Sometimes they feel like a huge waste of time and money, often proving what most of us already knew to be true just by living our lives with our children. It doesn’t help us get through today or tomorrow any better.

I understand the need for scientific study, especially since my original choice of study and intended career were in Biology. I get it. We need the scientific process. But, I am now a bit disillusioned by the whole thing. Frankly, I don’t really care all that much if there is a higher incidence of autism in families who live near the freeway or that autism and birth order might be related. I care about helping the generation of children with autism and their struggling families TODAY.

As Jenny McCarthy said in her book, “People can say there is no science to support our beliefs about the causes of autism and ways to treat it, but there is plenty of evidence. Just walk into the homes of families who have children with autism. They’ll be happy to introduce you to their science.”

I will say that I am happy that they are starting to figure it out. Keep coming our direction, highly-paid executives, doctors and scientists. We’re waiting for you! In the meantime, all of us parent warriors will continue blazing our own trails and hope that eventually the mainstream medical and scientific community will catch up to us someday. They’ll finally figure out that we were right all along. Gee, won’t they be surprised?   

P.S. I found some additional content at the 11th hour after I'd already completed this post. Rather than re-write it to cleverly include the new stuff, I'm just going to place it here at the end and save myself the time.

I stumbled upon another great read about this issue and highly recommend you check it out! Lisa Ackerman, the founder of TACA, did a great job summarizing this study and how we can move forward with this "new" information. She quoted a physician who recently gave a lecture she attended and I love what he said. “If an adult stopped talking or regressed in their skills, physicians would order a myriad of tests including an MRI.  When a child regresses or stops talking we just call it autism.”

This is the very attitude that is pervasive among pediatricians today and it needs to stop. That's my 2 cents. Or maybe we're up to a full dime by now! Anyway, please feel free to leave your comments below and add to this rant discussion.     

It just keeps gettin’ better and better!

**First, a disclaimer: What you are about to read is the whiny rant of a mom who is financially strapped, tired of fighting, stressed out, exhausted, and angry as hell. This post is not long, but it speaks to the struggle that thousands of families face both in my home state and across this nation. I know my situation is a walk in the park compared to others out there, but I just needed to vent. Thank you!**  

A couple of weeks ago I got a letter in the mail from our health insurance company in regard to an appeal for over 6 months of therapy charges that they denied. Their letter states:

“Based on a review of the submitted information in conjunction with the plan document language and healthcare policy, it has been determined that the charges…would not be medically eligible for benefits. Based on the documentation received, this child is autistic and there are no habilitative benefits under the medical plan.”

Welcome to insurance discrimination against autism, people. It runs rampant here in Washington.

As if it could not get any better, last night we got our new open enrollment packet for my husband’s work. The letter included stated:

“We must unfortunately raise the…plan rates this year…with an overall increase of 25%.”

We already pay close to $700 a month for medical and dental alone. With the new price increase, our cost is almost $800 a month, not including our other elections and deductions. I may have to sell a kidney here soon to pay for the benefits that my kids need (even though the dang insurance company refuses to pay on medically necessary claims).

So, instead of spinning my head around and spewing forth all of the venom I feel about our health insurance and financial situation, I thought it would be best if I just stopped writing now and simply posted a few more comics.

I removed a couple of letters on this pic. I think you get the idea!