Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.

In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.

A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  

As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     

I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.

I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   

Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.

This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.

To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    

One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.

For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.

A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.

We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?

If you haven’t yet thought about it, maybe now is the time.             

 

Book Review & Giveaway: Easy to Love but Hard to Raise

Have you finished your Christmas shopping yet? Well, today I’m trying to help you out a little bit with that. I have a book that is perfect to give to your extended family members who maybe need a little insight about special needs. Or, you can keep it as a nice gift for yourself as a reminder that you are not alone.

I was contacted by DRT Press about the new book, Easy to Love but Hard to Raise: Real Parents; Challenging Kids, True Stories, edited by Kay Marner and Adrienne Ehlert Bashista. They didn’t give me a big, fat check to say nice things about them, but they did send me a shiny, new copy of this book in paperback. I was cool with that because I love books, and may even have a slight problem with them - you should see all the books in my office…

You, my friends, now have a chance to win a copy of Easy to Love but Hard to Raise for your very own! It’s like a little bit of Christmas from me to you (courtesy of DRT Press). J

The editors set the tone for the book when they gave their acknowledgements:

…to all the parents of children who are oh-so-easy to love, but so hard to raise. May you find hope, community and kindred spirits in these pages.

You know you are in for something real when you see a statement like that.

There are stories written by 32 parents that describe situations they’ve had with their children. Between these anecdotes are brief Q & A sections with 25 experts that discuss related issues. This is a unique approach and it provides a nice contrast in content.

Rather than focusing on my favorite moments from the diverse stories shared within its pages, I find myself more drawn to the intent of the book.

I really appreciated the Foreward written by Dr. Edward Hallowell. Here is an excerpt taken from page xi:

Some kids are easy to love. Some kids just sail through childhood getting love wherever and whenever they need it. But then there are the kids who live in alphabet soup. They are not so easy to love. They can be difficult, distant, disobedient, defiant, dangerous, even delusional. They can leave a parent crying herself to sleep every night, they can leave a parent feeling guilty for having negative feelings, they can leave a parent despairing that the child will ever find a way in the world, they can deplete the store of love every parent starts off with.

But they can’t deplete it for long. That’s what’s so amazing about these parents. They keep on going. They never give up. They give their all, and then they find more all to give. They are paragons of the best of the human spirit. And they earn this praise in the hot and dusty arena of the struggle to raise a child who can seem, at times, impossible to raise.    

Yes!

Yes. He gets it.

With the Introduction from Kay Marner, we realize the true meaning of this book. It is this intent with which I write my blog. These words could have just as easily come from me and they speak the truth of what many of us parents in the trenches seek to do by reaching out to others.

No, I’m not a parenting expert, but I am an expert on my child and the complex and contradictory emotions that come with raising her. In time I’ve learned that there’s value in sharing these emotions. Expert advice is not the only thing struggling parents need. We also need to know we’re not alone; to know that other parents are going through similar experiences, making similar mistakes, and searching for similar answers. We need something experts can’t give us: we need each other.

Absolutely.

There’s really nothing more to say, is there?

If you want to learn about how other parents are dealing with ADHD, SPD, OCD, PDD and other diagnoses, than you should definitely take some time to read this book. The parent perspective is a refreshing change from the dry, scientific “experts” that we all read in our spare time between the various daily crises, adventures and attempts to sleep.

One thing is certain, if you hadn’t already figured it out: you are not alone.

Thank you to DRT Press for giving me a chance to read this book, and also for allowing me to give away a copy to my dear readers. To learn more about this book, visit www.easytolovebut.com or www.drtpress.com.   

*UPDATE as of 11/30/12 12pm Pacific*
There have been some technical difficulties with the giveaway widget since I posted this 12 hours ago. I started out with Rafflecopter and had a couple of entries, but ultimately I had to trash that one. I have to apologize to those that entered via Rafflecopter - I have no idea who you are...sorry. You will need to re-enter with the new widget. I replaced the old widget with a new one from PunchTab that seems to be doing better, unless you are on Internet Explorer. So far, it does not appear to work in IE at all and will not get past the "loading" screen. You will need to use Chrome or some other browser to enter the giveaway. SORRY for all of the issues this time around.

I’ll announce the winner of the giveaway next week! Good luck, everyone!

Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30^th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.


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I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005

 

It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

Honorary Aspie: Amelia Bedelia

I wrote this post about 2 years ago for another site and thought I had already shared it with you here on Caffeinated Autism Mom. I was telling someone about my Amelia Bedelia post, and when I got home to try to find it, it wasn't here! So, I am very happy to share this post with you because I had intended to do so a long time ago! Better late than never, right? Have a wonderful weekend and enjoy what's left of summer!
-Angela

Amelia Bedelia: A fun perspective for daily life on the spectrum

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When I was young, I used to love reading Amelia Bedelia books! Peggy Parish created one of my favorite fictional characters, and the antics of Amelia Bedelia always made me smile. A housekeeper by trade, she humors the reader with her literal interpretation of instructions. Her employer begrudgingly tolerates her quirkiness, and after a series of mishaps, all is forgiven after the first bite of one of her culinary creations. Whenever she blunders, her amazing skill in the kitchen is her forever saving grace.

Last spring I introduced my oldest son to the Amelia Bedelia series of books. He immediately took to them, and loved the books almost as much as I did – although I don’t think he understood the humor to the same degree. In particular, he derived a lot of pleasure from quickly saying her name over and over again. I think he liked the way the words felt on his tongue and in his mouth as he quickly said, “Amelia Bedelia.”

After our visits to the library over the summer, I would listen as my son read the books aloud in the car on the way home. Recalling her various escapades from the recesses of my brain, I remembered how Amelia Bedelia blissfully marched to her own beat. She was always innocently ignorant of when she was committing a mix-up that created chaos for others. No matter how much trouble she got into, she was always forgiven and loved. Her amazing desserts also went a long way to soothing frayed nerves!

When asked to “dust the furniture,” Amelia Bedelia thinks that it’s strange to dust the furniture, as she would rather than “undust” it. So, she finds the “dusting powder” in the bathroom and proceeds to coat the furniture and floor with the powder so that she can cross “dusting” off her chore list. Or, when she is asked to “draw the drapes” she finds a sketchpad and tries her best to draw a picture of the drapes.

Amelia Bedelia’s daily journey of literal misinterpretations of common phrases and idioms, and the reactions they receive, are indeed humorous. However, there are some parallels between the experiences she has in her books, and the experiences some kids on the autism spectrum have as they navigate their way through the social waters of life.

Those of us with verbal kids on the autism spectrum, or with an Asperger’s diagnosis, are quite familiar with the lack of social tact or understanding of anything that is not fully definable or concrete. If only these real life misunderstandings were as funny as Amelia Bedelia’s! Most spectrum kids really don’t “get” the complex gray areas that abound as we go through each day. Their literal translations of life situations are easier and much more logical for them to process.

Amelia Bedelia also brings to light the importance of having a usable and desirable skill, like her ability to appease her employer with a lovely dessert after coming home to a disaster she created. I fully believe that finding a special talent in each of my boys will aid them in their social experiences in and around school. For socially quirky kids, honing a desirable skill that successfully sets them apart from others will also hopefully aid them as they become employed adults.

So, I guess that in an elementary way, Amelia Bedelia helps to give a glimpse into the mind of these complex kids…if only for a moment. I nominate Amelia Bedelia as an honorary Aspie! Do I hear a second nomination?

Moving on

As any autism parent can tell you, change is hard. Our kids have a hard time transitioning or doing something outside of the routine. I’m here to tell you that change is also hard for everyone else, too.

This past weekend I worked my tail off to help prepare my grandma’s house for sale. It’s been a long time coming. Grandma fell and injured herself a couple of years ago. After a stint in a rehab facility, it became clear that it was no longer a good idea for her to live by herself.  

My grandma is almost 95 and she is healthy as a horse. She is also stubborn as a mule! By God’s grace, she still has her wits about her. I can only hope and pray that I will be the same way when I am her age…if I ever get there!

Since she moved in with my aunt about 2 years ago her house has been sitting vacant. Recently she decided she was finally willing to let the house go. I imagine it was very difficult for her because there are a lot of memories there. Out of all the grandkids, I think I spent the most time there and it was like my second home when I was growing up.

Going through all of her things was exhausting. Like many people her age, she was hesitant to throw anything away that could be useful, and she surrounded herself with knickknacks and pictures. Every so often I would stop and reminisce as something jogged my memory. My cousin and I would exclaim to each other, “Do you remember this? Wow!” We would shake our heads in disbelief as we walked down memory lane. It was really cool to uncover things we had long forgotten about or never even knew existed.

The one thing that made the weekend easier was the fact that grandma is still with us. Had we been going through her things after her passing, it would have been much more difficult. I was grateful for the opportunity to clean and organize her house without grief. It was also very enjoyable to gather together a few family members and friends of the family that are scattered around and work toward a common goal.  

Since it was a sunny weekend, the house was warm and it was really stuffy from being unoccupied for so long. We opened up all the windows and doors, cranked up the music, and got our groove on well into the night. All of the neighbors must have loved our shake-your-booty-and-sing-your-heart-out renditions of songs by the Village People, Milli Vanilli, the Bangles, and others. Poor neighbors. They are probably traumatized for life. Over 2 nights, I think we got about 5 hours of sleep total. By the end, we were hobbling around covered in dust and grime and completely sore and tired.

Gram's house is the epitome of 70's chic! Don't you love the green shag and orange furniture? You should have seen this room before we stripped it clean. We removed a couple of pieces of furniture, all the pictures off the wall, the tons of dried and silk flowers, and the knickknacks from every corner and surface. By paring down the room, it's the largest we've ever seen it. Who knew there was this much space? 

My cousin, uncle and I were feeling emotional over certain things we came across and things we remembered, but we did our best to hold our emotions in check. I think we all knew that if we allowed the floodgates to open they just would not stop. I somehow managed to hold myself together while I was in the house.  

On my way back home, I crossed the bridge over the river from Portland into Vancouver and that’s when I lost it. I was a wreck off and on for the rest of that night and the next day. Lord help me when the house actually sells. She’s the only grandparent left between my husband and I, and I don’t even want to think about when she goes to be with the rest of our grandparents in heaven.   

One moment that really sticks out in my mind from that weekend is when I stopped by the neighbor’s house to chat. As it turns out, they also have 2 boys diagnosed on the autism spectrum. I found myself in their living room chatting with them about autism, educational advocacy, and other related topics. Even though my hubby was home with our boys, it was like I was right back in my element.  

Once my grandma’s house sells, I will no longer have relatives in my old hometown. But, I will have community. I will have autism family. And that makes the change a little bit easier.

 

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.

A confused word

Prince Charming said something to me the other day that caught me by surprise. It was really cute, but in thinking about it afterward, I realized that what he expressed is not uncommon for those who are on the spectrum.

We were nearing the end of our morning routine and it was time to get shoes on before heading out to catch the school bus. I said, “Hey baby, can you go get your shoes please?”

Prince Charming gruffly retorted, “Why did you call me a baby?”

I immediately stopped what I was doing and turned my head to focus on him and process what he just said. Prince Charming had a scowl on his face, obviously displeased with my choice of words.

“Oh! I wasn’t calling you a baby because I think you’re a baby! I was using the word baby as a way to get your attention. It’s kind of like if I called you sweetie or handsome. I know that you’re a big boy!”

He responded, “Baby is a confused word." He thought about it for another few seconds and said with continuing disapproval, "That word is confusing to me. It’s a confused word.”

You know what? He’s right!

We haven’t had many instances of this kind of confusion around our house. Yet. I know that it is very common for people on the autism spectrum to interpret things literally. Prince Charming’s comment was not unexpected.

Titan and I tend to use a lot of creative euphemism. We even come up with our own replacement words to throw the kids off when we’re discussing things like what we’re having for dinner! It’s a strategic parenting trick that allows us to talk openly around the kids without them knowing every minute detail of what’s going on. I know that as the boys start to clue in more to our conversations, they will want explanations and clarifications on the subject matter. And, frankly, they’re so dang smart I figure they’ll have an accurate translation to everything we say soon enough.   

A day or two after Prince Charming told me about the “confused word,” I had a conversation with a young man diagnosed with Aspergers. He was playfully correcting my usage of certain words, explaining some of his personal vocabulary that more accurately fit the definition of the words. Seeing it from his perspective, it made total sense. It was really cool to get insight into an adult’s brain and better understand how they think and process information.  

I wonder when the next time something like this will come up with my boys, and how often we’ll experience these moments. We might end up having some very interesting conversations!

What is your favorite or most memorable moment when your child took something you said literally?       



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…