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!

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.

Guest Post & Interview: Regarding Caroline

Today I am very lucky to have Rebecca from Regarding Caroline with me!  She graciously agreed to do an interview and is also allowing me to share one of her posts. It is a must read!

CAM:  Rebecca, I wanted to sincerely thank you for taking the time to chat with me. I have to tell you that I found out about you and your site through some Facebook friends who were madly posting links to your site the day you posted, “That Would Never Be My Child…” They were right to be sharing your post! You really drew me in as you talked about how you were never going to have that child or that house. I understood it also as not wanting to be that mom. You captured my attention, for sure.

As I continued reading, I found myself nodding my head in agreement all the way through. You spoke about everything so completely and honestly, without judgment or negativity. That is why I felt compelled to contact you to get your permission to post the content on my own blog. My readers needed to see it. I am so grateful that you are giving me the chance to share your advice and a little bit about you and your daughter.

I’d like to start by asking about how things are going at your house right now. How is your family doing?

Rebecca:  Well, first of all thank you for your generous compliments!  Things at our house are going well.  Caroline is 5 and in mainstream Kindergarten with an aide.  She’s such a happy girl who truly loves life.   

There are two ways I look at our situation.  On beautiful days, when the sun is shining and everything is happy, I think about how lucky we are.  For a long time, I doubted that she would ever speak.  Like so many parents, I prayed, “Please, let her talk to me and I won’t ask for anything else.”  I’m grateful that my prayer was answered, but still, on those cloudy, dreary days when we’re stuck inside working on what feels like the same goals we’ve had forever, I’ve been known to forget that promise I made and start to feel sad about all the things she can’t do, such as have a conversation with a friend. We always want to get to that next step with our children, even if they’re typical, which is good, because it keeps us motivated, but also so important to remember from where we came and count our blessings for what we do have.

When she’s not “herself” it always means something is medically wrong.  Recently, she had a rapid onset of new OCD type behaviors and irritability.  With the help of a specialist, we learned that she’s dealing with PANDAS.  It’s been a whole new journey of discovery and healing.  PANDAS is an autoimmune disorder that affects a large percentage of children on the spectrum, but I’ve found that many people are still unaware of it.   After seeing how much Caroline improved with treatment for it, I’m going to have to get the word out!  For her, when we treated the inflammation caused by PANDAS, her eye contact and engagement profoundly improved and other typical ASD traits decreased.  It makes you wonder how many other children on the spectrum could also improve.  So overall, Caroline is doing well.  Thinking about how hard she works to attain what comes easy for most kids, makes us very proud parents.

CAM:  Just a quick note on this – PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. If you are interested in learning more about what happened with Caroline, please visit Rebecca’s post about PANDAS. I also wrote a post about these issues that includes a link to a scientific case study about PANDAS. OK, back to questions...

In Washington State there is insurance discrimination against the autism diagnosis code, which means insurance companies can get away with not paying anything. It’s commonplace and tragic for families like mine. Does insurance cover any of the treatments for your daughter? Do you have any tips on how to pay for treatments?

Rebecca:  We’re fortunate that we live in one of the states that have mandates for autism coverage.  Here in Illinois, insurance must pay for $36,000 of medically necessary autism related therapy each year.  The majority of Caroline’s speech, OT and PT are covered.  It’s important to have a prescription for the services and to use the right codes.  In the beginning we received many denials, but once we got those initial claims paid, we haven’t had problems.  The National Conference of State Legislatures website has a helpful page that outlines each State’s autism coverage requirements, in case anyone is unaware of what their State offers. (http://www.ncsl.org/?TabId=18246)

CAM:  Like many of us warrior parents, you probably have your PhD in vaccines from Google! Do you have any sort of estimate on how much research you have put into the topic of vaccines?

Rebecca:  That’s so true, and it’s too bad we can’t print out Google diplomas after we reach a certain number of hours logged on a topic!  The nice thing about the internet is that it allows us access to scientific journals, Pub Med and sites that allow for serious research into the topic.  The type of research even my former law school professors would approve.  Often times, us parents aren’t just reading the sites that report the stories, we’re reading the research itself.  Research that most pediatricians don’t even know exists, which as you know is the frustrating part!

How much time I’ve spent varies widely.  Right after her vaccines, when I first noticed changes in Caroline’s behavior, I researched them every night until I was exhausted.  I was actually looking for articles to prove that vaccines couldn’t have caused the changes, but I couldn’t find any.  All I found was more and more proof that they did.   I felt so sad and guilty that I had to let it go for a while and start focusing on recovering her.  I took all the time I was spending and put it into researching biomedical treatments.  Then, after she started recovering, and enough time had passed, I was able to look at it again.  Now, I keep up to date, reading new reports as they’re released, but still spend more time researching biomed and educating others.  

CAM:  Have you ever spoken with your daughter’s pediatrician about her vaccine injury? If so, what was the response?

Rebecca:  Our situation is unique because the pediatrician who gave Caroline her vaccines moved away just after her last set, at 12 months.  The pediatrician who took her place has never given Caroline a single vaccine.  She has two children herself who developed seizures after their MMR vaccines, so for her third child she delayed it.  Yes, you heard that right, DELAYED.  That’s how strongly Pharma has convinced these doctors and how little of their own research they do.  She admits she has not read any independent research.  I have given her some and I hope it gets through.  Who knows, maybe like so many doctors with vaccine injured children, someday she’ll become an alternative practitioner. 

The pediatrician who vaccinated Caroline after my continual questioning is now in Minnesota.  Just last week, I requested an email address to get in touch with her because I wanted to send her the blog.  I think she deserves to know.

CAM:  Another note – If your child has experienced a reaction to a vaccine, please contact your doctor and ask them to report it to the VAERS (Vaccine Adverse Event Reporting System) database. Vaccine injuries are notoriously underreported, so if you see any behavioral or physical changes following a vaccine, it is important to get those documented so that you retain your rights to access the vaccine court, should it be warranted. Now, here is the last question.

If you could boil down your experience into one nugget of wisdom, what would you like to share?

Rebecca:  Wow, that’s a tough one.  If I have to choose just one, I’d say “Stay the course.”  It seems that sometimes parents try biomedical treatments or the GFCF diet briefly and think, “Well, that didn’t work.”  Almost as if they don’t want it to, because, well, honestly, in the short term, it’s easier that way.  I know the feeling well!

The problem is that many of the things we’ve done with Caroline have resulted in only subtle changes, but over time and combined with others, they amount to a remarkable difference.  Miss a step or two, or three and she would not be where she’s at today.  An example is how many children need to also be soy free or even grain free for “the diet” to help.  If those things are not tried, an opportunity for healing and recovery might be missed. 

To be sure I don’t ‘abort mission’ too soon, I try to understand the science behind what we’re doing.  Knowing why something should work helps me to be more invested in it, increasing the chances I’ll stick it out and ultimately that Caroline will benefit.   

CAM:  That is excellent advice! I, too, have seen many families give up on new things too quickly. I think it's hard for parents to be patient because it seems like we are all in a rush to survive our current crisis, whatever that may be. We want to see positive changes yesterday! It can be very hard to have a little faith in something when the changes are slow and subtle. This is where good record-keeping or journaling can help you understand where your child was before, during and after a new treatment.

Before I launch into your post, I wanted to share my absolute favorite thing you said:

“That would never be my child,” was the rationale that resulted in my ignorance. An ignorance for which I paid an incredibly steep price. The life of my child was changed forever. Much of her childhood has been spent seeking recovery and the guilt I feel will never be lifted.

Rebecca, your words mean so much. I can only hope that more people will take those words to heart as they make choices for their children. Thank you for being here today.  

Rebecca:  Thank you for taking the time to ask such thoughtful questions and for sharing our story!

CAM:  Please visit Regarding Caroline to learn more about Caroline’s journey, get some great links, watch Caroline’s recovery video, and much more. You can also “Like” her page on Facebook.

That would never be my child...

Although Caroline is 5, it seems like only yesterday I had a life that was my own and was so blissfully unaware of the demands of motherhood, that when witnessing a screaming child in a restaurant I'd think, that would never be my child.

And when I was pregnant, visiting a friend's house where dolls and toys were strewn about every room, I insisted to myself, that would never be my house. In fact, I didn't want colorful, plastic anything. The thought of a high chair disrupting the clean lines of my stainless and glass dining table caused me tremendous anguish.

Needless to say, I've come a long way since then... and I have a house overrun with toys, games and stuffed animals to prove it.

So "Why is it," new moms often ask, "that they don't tell us what it's really like having kids before we have them?"

Honestly, I can't say no one did. People do, we just don't listen.

We're too busy living our fabulously free lifestyles to begin to contemplate what true sleep deprivation actually does to one's mind or to comprehend how it will feel to have the 60 minutes we spend getting ready dwindled down to 5 (if we're lucky).

We may hear the words our friend is saying - but subconsciously we think - that would never be my child. My child will sleep through the night and be easy, beautiful and perfect.

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.     

Mother Warriors: Review & Commentary

- I originally wrote this in November 2008 and posted it on another blog. I thought I would dust it off and recycle it in honor of all of the wonderful mother warriors out there. I hope you all had a lovely Mother's Day. - 

On a recent trip I had some quiet moments to read and I found myself engrossed by Jenny McCarthy’s latest book, Mother Warriors. I admit, I wasn’t a huge fan of her previous book, Louder than Words, but her new book spoke to me and I finished it in less than a day. Much to my surprise, I found myself in tears by the end.

No matter your opinion of Jenny McCarthy, she is one of the top vocal advocates for the autism community and is pushing nerves and helping spread the word that there’s a big problem. I am a parent of two diagnosed on the autism spectrum, and I am trying to make a difference and be vocal in my own community. Jenny can do what I cannot – give major television interviews, write best-selling books, and generally increase the national awareness about the autism epidemic. I admire her passionately stepping up to say something despite the controversy of the topic.

Chapter 2 of Mother Warriors is an extended analogy that Jenny provides about the plight of many families dealing with autism. A child appears normal and then one day something changes and the child seems to be lost (often very suddenly) to autism. Many believe that vaccines triggered their child’s autism. In the words of Francis Collins, “Genetics loads the gun and environment pulls the trigger.”

Organization is good for the soul

You may remember that earlier this month I laid out plans to tackle the paperwork monster – my office. Anyway, yesterday it got really emotional. Who knew that pieces of paper could hold such strong emotional attachment?

I spent about 3 hours working in the office, and I went through all kinds of things. I saw the very first drawing Monkey ever made. I also found about a half-dozen of his baby teeth, and marveled at his first attempts at writing. I glanced through paperwork from the hospital when he was born, along with the momento birth record signed by the doctor who delivered him.

There were well-baby visit records, with growth charts and little dots indicating where my boys fell on the curve. I found a large stack of immunization information sheets from when the boys got their shots. Wow. Reading through those with new eyes made me tearful at my own ignorance back then. Boy, did that get to me! Even now, it’s getting to me as I write this. Those were the days before I truly understood what autism was and what impact my choices would have on my children.

I even found the Christmas letter I wrote when I broke the news of the boys’ diagnosis to the family and our close friends. That was 2007. It was a big year. Monkey was 4 and Prince Charming was 2. I can’t even describe how little sleep I got while I was up at all hours cramming my brain full of information, trying to do something…anything to help my children. I was a slave to my car, chauffeuring them around to appointment after appointment, most of them a considerable distance from our house. There were receipts from classes I attended, and lots of progress notes from therapists. I rolled through that year like a freight train for sure.

I also found a handwritten letter from a relative who passed away a year ago, and I took some time to honor her memory. There was so much more to appreciate, digest, and filter through. All of it brought back a flood of memories, some good and some not so much.

I didn’t expect cleaning my office to be so emotional. I’m about halfway done now. I’ve filled my shredder more than 4 times, recycled about 4 boxes worth of paper, and packed up about 6 boxes. There’s still a lot to do. I’m getting there, slowly but surely.

Yesterday’s experience makes me wonder what other things I have yet to find. There are forgotten moments among the disarray, waiting to be rediscovered. I guess organization really is good for the soul.   

    

Diplomatic Warrior

Diplomatic warrior. Sounds strange, doesn’t it? Well, I think it’s a term that fits me. There was a time in my life when I was disparagingly dubbed a “diplomat.” In fact, being too diplomatic cost me an amazing opportunity while I was in college. Ultimately, that loss brought me to this very moment - fighting the good fight for my boys.

Our family’s journey with autism has caused me to become the warrior mom that I am today. I wear the badge proudly. I work hard to help my kids. If you get in my way, prepare to be steamrolled by one tough Mama Bear! My boys have made amazing strides, but it certainly hasn’t been easy. Nothing about it has been easy. But, they are recovering, and I can tell you that life is better now than it was even a year ago.

I’ve become a different person over the past few years. For instance, I never thought I would run a support group. Ever. But, I’m now in my third year of sharing and learning with a group of great parents. We all work and fight to help our children in the best way we can. A label doesn’t have to define your child’s experience. In fact, it can propel you forward to positive change.

While working with my group and a local nonprofit over the past few years, I learned that legitimate connection with people often trumps the need to always have the “right” answer. I can be strong-willed and opinionated. There are a few topics that I could easily do a lengthy verbal dissertation on. Some of my poor friends have heard me do just that! I don’t know how they can put up with me sometimes. We all have our hot-button issues, but we also learn how to pick our battles. Honey is better than vinegar, right?

There have been times that I’ve gained knowledge and perspective by simply shutting my mouth and listening to ideas that challenge my view. It doesn’t mean that I will always agree, but sometimes I can truly see the value in something that is exceedingly different from my own current thinking.

The autism community could use a good dose of diplomacy right about now. Facebook has lit up the past few days with issues that divide the various autism “parties.” I’ve also seen this kind of division and rhetoric in my own community. There are so many reasons to have a strong viewpoint when it comes to autism!

Do you think it’s safe to vaccinate, or are vaccinations contributing to the incidence of autism?

Do you believe in embracing neurodiversity, or do you choose to pursue biomedical treatments to help alleviate and improve medical symptoms related to autism?

Do you think Dr. Wakefield is a quack, or do you think he’s a doctor who has risked his entire career to help families with autism?

These and other topics are polarizing. Parents are tired from their daily autism battle. When you throw in strong dissent from the very thing you’ve cried and bled over, things can get messy. And, it can get very ugly, very fast.

As the saying goes, “Can we agree to disagree?”

When was the last time you had a discussion with a friend about religion or politics? Do you always have the same opinion as they do? Probably not. I think this easily carries over into the world of autism.

As far as I’m concerned, my role is pretty simple. I choose to share my experience so that others might have an easier journey with their child. You may disagree with my advice, opinion or methods, but that’s okay. And, I might disagree with you, too.

Autism is so prevalent and pervasive that it is literally kicking our collective backside right now! I’d rather fight beside you than against you. How about we all give each other a measure of respect, show some diplomacy, and battle on?