“The Force Is What Binds Us”: One Mom Uses the Greatest Power in the Galaxy to Connect With Her Son

(This is a guest post from Peggy Gilpatric, the mother of the boy who wrote to George Lucas asking him to change the rule that Jedis can’t marry. GeekDad Randy Slavey wrote up that story last spring.)

We stood behind the white line as they led him to the training area, his Jedi robe dragging on the floor behind him. I had my reservations about him attending Jedi Training Academy, even if it was just the one a Disneyland instead of in a galaxy far, far away. I thought that it might be too much for Colin. He had trouble following directions. He lacked the fine motor skills to engage his lightsaber. I knew he would get frustrated. Maybe it was the Star Wars fan in me, but autism or no autism, I believed that he could do this.

So, like a good Jedi mom, I stayed behind the white line with the other parents. A padawan helper noticed my youngling’s distress and came to his aide. He remained by his side until it was time to battle Vader. My son stood there, tiny and wide-eyed, and made wild swings at the Dark Lord. After it was over, another Star Wars fan was born. Colin was a Jedi and no one could tell him any different.

Photo: Peggy Gilpatric
Photo: Peggy Gilpatric

To a Star Wars fan, there is nothing more exciting than introducing your kid to the trilogy. This was made much more exciting by the fact that we had been living in Elmo’s World for about three years and it was making Hoth look like a great vacation destination. If you MUST watch something a million times then, for the love of Kenobi’s ghost, let it be Empire. Continue reading “The Force Is What Binds Us”: One Mom Uses the Greatest Power in the Galaxy to Connect With Her Son

A Letter to My Neurotypical Daughter

Photo: Natania Barron.

We tried to go on a family walk today. You know how it is. Your dad, your brother, and the two of us. It’s been just you and me for a while now, but I thought the boys would like to come along… I keep thinking we’ll get it right one of these days.

But just like the last time, something triggered your brother and we ended up hiking up the hill on our own to get the car because he wouldn’t use his bike, and was screaming all sorts of terrible words. Words he uses a lot that someday you’ll get in trouble for using. Waking up the whole neighborhood. You just played with your Hello Kitty toys and sang to yourself like it was no big deal, and on we went.

You’re not even three yet and I’m talking to you like a teenager. I’m expecting things from you that are beyond your years, too. When I found out I was having a daughter, after six years being just your big brother’s mom, I burst into tears. It’s not that I worried you’d have autism, too—I didn’t actually know that’s what your brother had until after you were born—but I suddenly had this understanding that you would be like me. That you would experience life as a girl. A woman. I thought I was a feminist before you were born, but then I became a fierce lioness.

Your dad and I spend so much time worrying about your brother, fretting after him, taking him to appointments, and making the world around him safe that I worry we’re forgetting you. Or missing things. Or overlooking the fact that you see and experience all of this, and you don’t have answers, either. Well-meaning friends and family remind us of this sometimes, too. Which makes me fret even more. But this is our family. It’s just part of the entrance fee, I guess. They just want to make sure that we’re not losing you in the shuffle, I guess.

You ask me, “Why is he so LOUD?” “Why is he so MAD?” “Why does he hurt me?” Then say, “I love him…”

I expected you to share your brother’s characteristics—like him, you’re curious and funny, bright and musical. But I didn’t expect you to be so kind, so thoughtful. But, love, you’re so strong, too. You get right up when you’re pushed down, you move on when you hear an unkind word.

The world will say you’re the lucky one because you’re “neurotypical.” But they won’t understand that you’ll be different, too. You will be changed, every step of the way, because you are the closest person in the world to your big brother. You’ll understand him, maybe better than we even do. If your lives are kind, you’ll both outlive your dad and me, and you’ll just have each other. But you’re different because he’s different. And different isn’t bad, no matter what people tell you. Every step will make you stronger, and working to understand him and his challenges will make you a better person. It has made me one.

I never take your kindness for granted, nor your innate ability to trust me and to love me. Your concern, your gentleness… I wasn’t used to that in a kid. I’m a different mother to you than I am to him, and that can’t be helped. But as you sing along to Frozen with your ukulele and you give me that smile of mischief, I can’t help but think how you make all of this easier. We didn’t ask for a child with autism, but it’s like you’re his perfect compliment. You can learn so much from each other.

I hope you learn from your brother to question. To stand up for yourself even when the odds aren’t in your favor. I hope you get a little of his stubbornness—but not too much—and his ability to push boundaries. But wait until you’re past your teen years, maybe?

I already see him learning from you, becoming more imaginative, finding interest in the things he missed as a toddler. You’re teaching him more every day about patience and play and pretend, and it’s exhilarating to watch.

You have taught me to treasure each smile—from both of you—as frequent or infrequent as they might be. You’ve taught me to sing along to “Let it Go,” even if I worry about the high notes because, to you, it’s just like having Elsa in the flesh. You’ve taught me to love more and hug longer and try harder, because you’re watching everything I do, and you need me to be your mother, your teacher, and your sister sometimes… Thankfully, I had a little sister. I know how things work, even if I made some mistakes that time. I’m up for the challenge.

There are some difficult conversations in our future. There are some dark days. We’re working on it—your brother is making great progress. But there are days when I won’t have answers, but I’ll always be here to do my best hear you out. And if I tell you “I love you” one too many times, or if I cry my way through too many sappy movies, I hope you understand, at least in part, why it’s that way.

Why My Kid Rejects Your Cause and Doesn’t Need Your Cure

My son smiling with a LEGO figure
Photo by Marziah Karch

My son has autism. That means his life is ruined. At least it seems to be according to people like Robert Kennedy Jr.

Kennedy still thinks vaccines cause autism. He’s also managed to make some pretty offensive remarks about autism just in time for “Autism Awareness Month.”

First, there’s this statement.

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone,” Kennedy said. “This is a holocaust, what this is doing to our country.”

Setting aside how wrong he is on the science, listen to the incredibly offensive things he’s saying here. “Their brain is gone.” So my son’s brain is gone? A holocaust? You know, my son would have been murdered by the Nazis for his disability. What you’re saying is that kids with autism are essentially dead.
To be fair, Kennedy apologized for using the word “holocaust.”
“I want to apologize to all whom I offended by my use of the word holocaust to describe the autism epidemic,” Kennedy said in a statement. “I employed the term during an impromptu speech as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families.”

But his apology is still offensive. He’s telling my son that his life is “destroyed” and he’s telling me that my family is “shattered.” By the “catastrophic tragedy” of autism.

Far from it.

Life for us does look different. My son has huge communication gaps and needs more supervision than other children his age. He has an aid help him in school. He freaks out around dogs. He does not cope well with changes in his routine, and he sometime melts down when things don’t go his way. He will likely need external supports for the rest of his life. But if you’ve ever met him, you’d know he’s incredibly sweet and charming. He’s one of the happiest people I’ve ever met. We spend far more time laughing than we do crying together. He’s not what I fantasized when I started my family, but now I couldn’t imagine a different life.

When you have a child, you also have a fantasy child. Your fantasy child may be a rocket scientist or the next president or a basketball star, but your fantasy child is still just a fantasy. Eventually, you realize that your child will choose their own path, and it likely won’t match the imaginary one you chose for them. It’s no reflection on your parenting skills.

All a parent wants–really needs–is a child that is capable of happiness and love. We get confused for a while and think that the things we imagine bringing us happiness will bring our children happiness, but it doesn’t work that way. You have to stop raising your fantasy baby and start raising the child you have. I just had to give up my fantasy baby a little sooner than the parent of a typically developing child. His happiness doesn’t look like my happiness, but it doesn’t have to. He’s his own person.

My son doesn’t need bad science. A fake cause. Something to blame. Sometimes things just happen for no known reason, and that’s OK. I can’t go back in a time machine to kill a butterfly and change things, and even if I did, I wouldn’t have my son. I’d have some other child that looked like him but wasn’t the same child I know and love now.

My son also doesn’t need a cure. He needs speech therapy and supports and help adapting to a neurotypical world, but “cures” are just more fantasy babies. Let them go. Focus on living in harmony and happiness with the autistic people we already have in our lives.

We really need to stop thinking of autism as the worst thing that could happen to a family. Dying from measles because some son of a politician told you not to vaccinate would be far worse.

Toca Band: Free App for World Autism Awareness Day

Toca Band
Image: Toca Boca

We’re big fans of Toca Boca apps here at GeekMom. Really big fans. Really, really big fans. So we are delighted to share with our readers that today (April 2), in honor of World Autism Awareness Day, you can download Toca Band for free at the app store.

“Over the years many parents, teachers and specialists have reached out to Toca Boca to share how impactful the company’s apps have been in helping autistic children engage, socialize and above all … have fun. In turn, Toca Boca wanted to give something back.” — Toca Boca

In Toca Band, you have the chance to explore music with your child, using 16 colorful characters and 48 sounds loops to orchestra your own symphony. There are no time limits, rules, or restrictions—just play. Though personally, there’s only so much of my son’s taste in musical blends that I can take! Toca Band is great for kids between 2 and 9 years old.

Just Shut Up About Jenny McCarthy Already

Photo by Michael Dorausch. This photo was cropped and is used here through a Creative Commons Share Alike license. 

While all of those recycled articles about Jenny McCarthy’s son not having autism are amusing, they are probably inaccurate. At least, according to her. I really wish people would stop, because it only serves to make her look sympathetic.

I understand the appeal of the argument. If her son never had autism, her “cures” are invalidated, so we can all feel smug that we’re following science, and she’s following woo. Too bad that life doesn’t always have poetic justice.

Here’s the thing: She, like many parents, followed a mix of very good advice and crazy, unsupported ideas on how to treat autism, if we are to believe the various statements she’s made to the press over the years. She got her son’s seizures under control using traditional medicine, not indigo mom crystal therapy. She had specialists work with him using applied behavioral analysis and speech therapy, both of which are evidence-based practices. She used play therapy and video modeling, both of which are used by traditional therapists. Time has also passed, and kids all tend to improve with time. Is it really a huge surprise that he had dramatic gains with all the things we already know work? Some kids just do better than others. It’s life, and life has never been known to be fair.

The part that should make us all mad, aside from the dangerous vaccine denial, is that she financed all that therapy for her son by selling books and endorsements for products and therapies that haven’t been shown to work at all. If people want to feed their kids gluten-free/casein-free cupcakes, that’s probably not going to hurt anything. However, it’s a real pity if they’re spending the money and time on special diets that they could be spending on something with some evidence behind it. I cannot stand people who sell snake oil to vulnerable parents. They’re the worst. I’d like to think she’s misguided rather than deliberately deceitful on this one, but she’s spreading misinformation either way.

I’d threaten to stop watching The View over her, but I’d have to start watching it first.

Now for those who would like a little better quality reading material, I recommend:

Unstrange Minds
The Reason I Jump
Autism’s False Prophets (and follow it up with Do You Believe in Magic by the same author)
Look Me in the Eye
The Science and Fiction of Autism


Why Hiring Jenny McCarthy for The View Is Irresponsible

Image via wikimedia commons
Jenny McCarthy, CC-BY Duncan Arnesault via Flickr.

This week when ABC announced that Jenny McCarthy would replace Elisabeth Hasselbeck on The View, the internet collectively voiced its outrage. McCarthy is (in)famous for her anti-vaccination stance and approach to autism treatment. Several GeekMoms, some of whom are parents of autistic children, and I were disgusted with ABC’s decision.

Here’s why.

McCarthy’s anti-vaccination message is dangerous.

Since McCarthy’s son was diagnosed with autism in 2005 and then “cured” a few years later, she has worked tirelessly to spread the message that his vaccinations caused his autism. Despite the medical community’s repeated and vehement assertion that vaccinations and autism are not linked, McCarthy has continued to attach her message to disgraced scientist Andrew Wakefield, whose 1998 study caused the original uproar over vaccines.

Despite the fact that Wakefield’s study was found to be fraudulent in 2010, and his medical license was stripped for largely fabricating the study’s results, McCarthy continues to support him.

Vaccinations do carry a small risk of injury, often as a result of other underlying conditions, and there’s no denying that it can be devastating. But they don’t cause autism. GeekMom Marziah wrote an excellent post in April and another last year detailing why not vaccinating your children has effects beyond one child’s immunity. Herd immunity is often cited as a reason why parents feel safe not vaccinating their own children. But this explanation from Wikipedia is right on point:

Unvaccinated individuals are indirectly protected by vaccinated individuals, as the latter will not contract and transmit the disease between infected and susceptible individuals. Hence, a public health policy of herd immunity may be used to reduce spread of an illness and provide a level of protection to a vulnerable, unvaccinated subgroup. Since only a small fraction of the population (or herd) can be left unvaccinated for this method to be effective, it is considered best left for those who cannot safely receive vaccines because of a medical condition such as an immune disorder, organ transplant recipients, or people with Egg Allergies.

As the number of families opting not to vaccinate increases, the herd immunity lowers for everyone—babies, unvaccinated kids, the elderly, anyone with a weaker immune system. Even delaying the recommended vaccination schedule can be dangerous, as has also been widely reported.

This graph from the CDC shows how states were meeting the herd immunity thresholds from 2006-2011:

Herd Immunity Threshold graphic from the CDC.
Herd Immunity Threshold graphic from the CDC.

In 2011, 49 out of 50 states did not have enough herd immunity against pertussis to meet the threshold because, who still thought of whooping cough as a problem?

The following year the worst whooping cough epidemic since 1955 clocked in at 42,000 cases.

I was pregnant in 2011, having my daughter in March 2012, and my OB/GYN actually encouraged me to get the pertussis vaccine while pregnant. The latest scientific evidence showed that mothers could pass on some protection from the vaccine in utero to protect babies until their own two month pertussis vaccine. I got the shot without hesitation. The research was so new I had to convince my general practitioner to administer it to me. The outbreak flared up that quickly.

The MMR vaccine was the first to be subjected to autism claims, and this makes the statistics in the bottom half of the graph troubling. Measles are no joke, and many states are falling under safe levels of immunization. That could mean a resurgence of measles similar to that of whooping cough. Read Mahi’s story for an idea of what can happen to a child who contracts measles before they have had the MMR vaccine. The risk of death or debilitating injury from disease far outweighs the completely debunked risk of developing autism.

Jenny McCarthy’s autism organization, Generation Rescue, has promoted severely questionable autism treatments. 

Dr. David M. Perry wrote a scathing op-ed this week for CNN, highlighting some of the practices of McCarthy’s Generation Rescue organization. Several of  the GeekMoms are divided on whether promoting dietary changes like a gluten-free, casein-free diet qualifies as “extreme.” Scientific studies on the benefits of specialized diets to treat autism are in their infancy, but “promising”—and some of us have seen first-hand how dietary changes can alter a child’s behavior in the case of food allergies, but it isn’t proven as yet.

It’s the other treatments that Generation Rescue promotes that have some of our hair collectively standing up on end.

This year’s AutismOne and Generation Rescue conference included panels on how to conceive a child without autism. There is scientific study into the development of autism in utero, but the description of this panel smacks of eugenics and slight religious fervor. It claims to unveil a way of preventing autism before conception. As if the tone didn’t already hint at the inferiority of autistic human beings, it goes on to suggest that parents should be doing more to prevent autism before they’ve even conceived a child. This is the definition of fear-based parenting.

Another panel at the conference focused on stem cell treatments for autism (scientific efficacy of which is still unknown). Stem cell treatments are not only costly and unproven, as Dr. Perry mentioned, but they are extremely invasive. The potential for trauma from the procedure itself in a non-communicative autistic child is very high. Volunteering a young child for the study, or the eventual treatment if passed, raises some serious ethical questions that need to be addressed.

And then there are the bleach enemas. Miracle Mineral Supplement (MMS), an enema made with diluted industrial strength bleach, was touted at last year’s AutismOne/Generation Rescue conference (where Jenny McCarthy gave the keynote and discussed chelation) as the latest “biomedical” autistic treatment. I’m not sure the word “biomedical” means what they think it means. The idea of preying on desperate, suggestible parents (who should still know better) by touting a flat-out abusive treatment for disabled children is abhorrent.

And Jenny McCarthy is running the show.

She has influence, but no expertise.

University of Michigan did a study a few years ago to find out what sources parents trusted for information on vaccinations. Of the 1500+ parents surveyed nationally, 24% answered that they placed “some trust” in the opinions of celebrities like Jenny McCarthy—who is by far the most outspoken anti-vaccine celebrity around.

The study also found that women are far more likely than men to be influenced by anecdotal evidence from friends and celebrities. That is truly staggering since celebrities have no formal training or real expertise in the field of vaccinations. But their opinions (and, by default, hers) influence a significant portion of the population’s decision making about vaccination.

Jenny McCarthy is compelling. She speaks to parents—particularly mothers—who are struggling, who want to be heard, and who are desperate for cures. She coined the phrase “mother warrior” and talked openly about her education from “the University of Google.” She is single-minded in her convictions about autism. But she is not an expert.

This interview was just two months before the Institute of Medicine’s conclusion that the current CDC vaccine schedule is absolutely safe for babies and children. It comes a couple of years after her assertion that the MMR vaccine specifically causes autism (Andrew Wakefield’s falsified study). On the back of the MMR scandal was the assertion that thimerosal, a mercury-based preservative in vaccines, was actually the cause of autism from immunizations; this was also debunked. Then it was “too much, too soon.” Three debunked theories in a row, but McCarthy maintains her influence.

Her influence is strong enough that there’s an entire website dedicated to the death count brought on by the anti-immunization movement that she leads. The site only very recently changed its name from Jenny McCarthy Body Count, acknowledging the movement has become so much bigger than her.

All of this from a celebrity whose son may not have had autism in the first place. Karl Taro Greenfeld profiled the Playmate in 2010 and hypothesized that her son may actually have had Landau-Kleffner syndrome. Or he may have just been a normal child with developmental delays who finally caught up.

Jezebel followed that article with a piece titled “The Jenny McCarthy Conundrum: Is False Hope Better Than No Hope?” I think it hits the center of the issue:

The enduring popularity of McCarthy and her message may highlight a need for pediatricians and autism experts to better understand the emotional needs of families. Stopping vaccines clearly isn’t the answer, but clinicians need to regain parents’ trust — and to do so, they must recognize that doing something for a child, even if it’s not supported by science, may feel better than doing nothing.

Parents of autistic children, and other special needs children, need to feel like they are doing something to make it better. And a personable celebrity who tells them how will sometimes win out over science.

ABC is giving her carte blanche to talk about whatever she wants on The View.

Following the announcement of her hiring, a New York Times post suggested that ABC made it very clear that McCarthy’s views on autism and vaccination were welcome on the show:

Lauri Hogan, a spokeswoman for “The View,” said the show had made no request to Ms. McCarthy that she keep the vaccine issue off limits.

“All the hosts speak openly on a variety of topics and as has been stated repeatedly, Hot Topics are not scripted,” Ms. Hogan said in an e-mail message, referring to the part of the show in which the hosts discuss issues in the news.

This means Jenny McCarthy will have a platform five days a week to spread her message to The View’s largely female audience. That is a lot of mothers, and a lot of parents home with special needs children who will now get daily affirmation from a major network and from Barbara Walters, a powerhouse in female broadcasting, that McCarthy’s views are important.

It’s a reckless disregard for the damage that’s already been caused by her brand of autism advocacy.

Another post this week from Michael Specter at The New Yorker sums it up:

Executives at ABC should be ashamed of themselves for offering McCarthy a regular platform on which she can peddle denialism and fear to the parents of young children who may have legitimate questions about vaccine safety. Presumably, those executives have decided that the revenues Jenny McCarthy might generate are worth more than the truth. That’s their right. But it’s a strike against reason and progress and hope. That is a cost that the network won’t be able to afford for long, and neither will the rest of us.

I think if McCarthy can claim that greed is driving the pro-vaccination movement in this country, it is fair to point that same finger back at her and the network that hired her.

Greed and ratings should never be considerations when it comes to public health issues. Shame on ABC.

Sometimes It’s Not the Legos

Photo by Marziah Karch
Photo by Marziah Karch

My son and I built our first Lego brick kit together. We’ve got tons of Lego bricks around the house. At one point, I even bought them off of eBay by the pound. My daughter and I assemble them together all the time, but adding my son to the activity was more accommodation than it was true participation. Until last year.

He’s autistic, and sometimes it’s hard for him to sit still, to communicate, and to follow multi step instructions. He loves playing with Legos, but the idea of putting together a kit was too much for him. He’d rather play with the pieces his way. And that’s fine. That’s why we have all those bricks around. Some kids on the spectrum are the opposite. Lego kits must be assembled exactly the way the instructions say. Any other way would be breaking the rules.

We found a surprise when cleaning out my shelves. An old Lego kit. It’s so old that I’m pretty sure bought it before I had kids. I set it aside, and my son picked up the box and excitedly declared, “Lego Star Wars!” I told him we could build it together.

I pulled out the pieces and the instruction book. Normally what would happen at this point is he’d get upset about me interfering with his toy and grab all the pieces, and that would be that. Instead, he sat next to me and built along. I’d point at the step in the instructions and try to find the appropriate pieces. He’d look at the picture and put the pieces in place. Correctly. Sometimes he’d ask for the pieces for the next steps, “Gray! Blue! Green!”

When his toy was assembled, he declared it to be a space ship, and then spent most of the afternoon taking off into space. “Zooom!”  I immediately knew what he was getting for his birthday.

As it turns out, I could have purchased a couple of kits for the price the now collector’s item Slave I ship would have fetched new in the box. I don’t mind. I got to spend some mother-son bonding time and see my boy develop a new skill. Sometimes it’s not the Legos.


A version of this article originally appeared in Wired. 

This Dragon*Con, the Fans Pick the Charities


Charity auctions and other fundraising events are a mainstay of many fan conventions, including Dragon*Con. In 2012, they raised more than $45,000 for the Georgia Chapter of the ALS Association. The year before, it was $40,000 for the National Inclusion Project, which helps children with disabilities. And the con’s annual blood drive is a popular event, donating thousands of units of blood over the weekend. This year the con decided to approach charity a little differently by asking the fans where they’d like their donations to go in 2013.

The event asked people to participate in a poll between April 15th and April 28th, during which more than 39,000 votes were cast for one of five pre-selected organizations. The top three vote-getters were named as the official charities of Dragon*Con 2013.

Noah’s Ark Animal Sanctuary, which shelters injured, abused, and unwanted exotic animals, won 66% of the vote and thus will receive 50% of the money raised during the con. The second-place charity, Georgia Conservancy, will receive 30%, and third-place Marcus Autism Center will receive 20% of the funds raised.

Over the last eight years, Dragon*Con has raised almost $224,000 for charity. This year it will add a matching contribution from the con itself of up to $50,000. In addition to that official charity fundraising during the con, they’ve donated $265,000 to The Community Foundation for Greater Atlanta (where Dragon*Con is held) and other organizations.

Vaccines Still Don’t Cause Autism

Image courtesy The Morgue Files
Image courtesy The Morgue Files

People who think vaccines cause autism are hard to convince otherwise. Over the years they’ve come up with many reasons they think vaccines could cause autism, and when one cause is scientifically tested and rejected, the most stubbornly anti-vaccine just come up with another reason. When it turned out not to be caused by the MMR vaccine, the ethyl-mercury based preservative in some vaccines was blamed. When the preservative was removed, the goalpost was moved to the harder to test, “too many, too soon” complaint.

Under the “too many, too soon” hypothesis, it wasn’t a specific vaccine that caused autism but rather the increasing number of recommended childhood vaccines. Some parents used this to justify delaying vaccines instead of using the recommended schedule with the idea that it gave the immune system a chance to recover. Delaying vaccines is actually a bad idea, because it increases the window of vulnerability for children. That, in turn, endangers babies too young for vaccines.

Well rest assured. Following the recommended schedule does not put your kids at an increased risk for autism. There’s no link between the number of vaccines a child receives and their chance of later developing autism.

Instead of chasing after a cause for autism that’s been disproven time and time again, can we start focusing some of this energy and research on improving the lives of individuals with autism?

Support Neurodiversity at ThinkGeek

Image Courtesy ThinkGeek

April is Autism Awareness Month, but if you’re like our house, autism awareness happens every month. That’s one of the reasons I love this shirt on ThinkGeek.

Neurodiversity is a movement centered around the philosophy that autism isn’t a disease. It’s a difference in development. Sure, it’s also a disability, but that doesn’t mean we shouldn’t celebrate the child we have instead of longing for the child who will never be. For more information on how this plays out for us parents, I recommend watching Loving Lampposts or reading Unstrange Minds.

If you buy a Neurodiversity shirt from ThinkGeek this month, all the proceeds will go toward neurodiversity advocates, ASAN.

ASAN, or the Autistic Self Advocacy Network, is a 501(c)(3) nonprofit organization formed by autistic individuals for self advocacy and public outreach. Through my work organizing a regional autism conference in Kansas City, I’ve met both of the co-founders, Ari Ne’eman and Scott Michael Robertson. (Point of trivia: Ari Ne’eman is the first openly autistic White House appointee. ) I’m happy to support them in their advocacy efforts, and I’m proud to think that someday my son may join ASAN himself.

The shirt comes in adult and kid sizes, so you can find one to fit yourself or your loved one of any age. If you’re going to buy a shirt, there’s less than a week to do so. Buy it during Autism Awareness Month, or as ASAN better puts it, Autism Acceptance Month. 


501st Legion and Me

501st logo

Some people dreamed of growing up to be a storm trooper and some of us actually made it there. Since February 2011, I have been a proud and active member in the 501st Legion also known as Vader’s Fist.

The 501st legion is a worldwide professional costuming club that specializes in the “bad guys” of the Star Wars universe. We never charge for appearances and have shown up to everything from charity walks to formal weddings. In the past 12 years, the 501st Legion has grown to more than 5,000 active members worldwide.

As stated in Article 1 of the Legion Charter“…The Legion is an all-volunteer organization formed for the express purpose of bringing together costume enthusiasts under a collective identity within which to operate. The Legion seeks to promote interest in Star Wars through the building and wearing of quality costumes, and to facilitate the use of these costumes for Star Wars-related events as well as contributions to the local community through costumed charity and volunteer work…” 

Left to right: Zach Winnermark, Dakster Sullivan, Dave Young, and Yoda – Galactic Academy member. Attending Autism Walk 2011
Left to right: Zach Winnermark, Dakster Sullivan, Dave Young, and Yoda – Galactic Academy member. Attending Autism Walk 2011

There is no cost involved in applying or staying active in the legion. The bare requirements are being at least 18 years of age and owning a movie quality costume from one of the Star Wars films. The legion also accepts costumes from the expanded universe such as the books and video games. For a complete listing of costumes currently accepted by the legion, take a look at the visual guides.

To get into the legion is no laughing matter and for some it takes years of blood, sweat, tears and financial planning. My husband, Brian, has been working on a Jango Fett for the past year and he is still not done yet. Others have it a little easier and complete their builds (costume) in a matter of months. My animated clone trooper build took 5 months. With the expertise and guidance of Zach Winnermark, Dave Young and Shawn Oudit of the Florida Garrison, my clone trooper Denal was brought to life.

Since, I first received my helmet, it has been an adventure. I have learned patience, confidence and most of all I have made lasting friendships and touched the lives of children and adults. There is nothing like stepping out and seeing the look of amazement on a child’s face. It’s great to see the adults jumping up and down at our arrival as well.

Paul Button, Lake Eola Step it up for Down syndrome
Paul Button, Lake Eola Step it up for Down syndrome

Marching in parades is a fun past time of many troopers. Some parades we can be a little more relaxed and have fun with the spectators. In other parades we are instructed to act as a military unit (no waving or interaction with spectators). When the legion was invited to participate in the Rose Bowl parade in 2007, George Lucas was very specific on how he wanted everyone to look. To achieve a military look, he had all 200 legion members participating work with military drill instructors for 2 days.

For other events, such as Star Wars weekends at Hollywood Studios – Orlando, Florida, we might get together and decide to go military or just wing it. It takes a lot of skill and practice to pull it off.

Dakster and her son Brandon
Dakster and Brandon, Acme Comics Fundraiser 2011

My 6 year old son tells everyone that his mommy is a clone trooper. While marching in the motorcade during Star Wars weekends, I saw him jumping up and down from the side lines yelling “Mommy!” Sometimes he suits up as Captain Rex and troops alongside me. He is also very quick to correct people when they call me a storm trooper.

Conventions are another fun thing we participate in. There are many throughout the world that we attend. My home town favorites are Megacon, Dragoncon, Vulcan Events: Away Mission Orlando and Star Wars Celebration. Suiting up for these events is sometimes half the fun. At Megacon this past year I suited up in my hotel across the street and walked all the way into the convention center and then some to get to our booth. My total time suited up ended up being around four and half hours. It’s also interesting to see others have fun with their costumes and not always go movie accurate at events. My husband, for

Dakster and Brian
Brian and Dakster, Megacon 2011

example, only had his Jango Fett helmet completed around Megacon, so he improvised and trooped along side me as “Mob Boss Jango”.

Some of my favorite moments include talking to others while suited up. The first reaction of most people after hearing my voice is usually “it’s a girl!” One mom in an effort to explain why I sounded like a girl to her children said I was Princess Leia in disguise. My reaction is usually to laugh, but inside I’m proud. I worked hard to get to the moment of stepping out in front of the crowds and serving the empire and I hope to continue for a long time.

For more information and to find your local 501st garrison, please visit www.501st.com

Have you had a run in with the empire? Share your stories with us in the comment section.

How the IPad Is Teaching My Son to Talk

My Son the Fire Fighter

This is my son. He’s an aspiring fire fighter and a fan of Thomas, Lego, and Angry Birds. He’s also autistic. He has difficulty getting his words out because of a speech issue called apraxia. Basically, his mouth is a klutz and doesn’t do a great job planning out the sequence of events it takes to form words. His mouth would be the worst guest on Dancing with the Stars, ever. Meanwhile, he can understand  a whole heck of a lot more than he can say, which means a lot of frustration on his end and people easily underestimating his abilities on the other end.

What to do? Well, last year he took an expensive, specialized speech-generating device with him to school. His “talker.” Under the hood, it’s really just a modified Windows XP tablet with an extra sturdy case and a handle. Insurance paid for it, thankfully, because otherwise it would have been a stretch to purchase a several-thousand-dollar device, and we might have been at the whim of the school district. They’re lovely people, but we’d heard stories of parents fighting to keep the device with their kids after school and over holidays.

The other drawback with such a specialized device is that our darned kid outgrew it right away. He learned to read and write pretty quickly, and he needed something with more than pictures. Toward the end of the year, it broke, and we questioned whether or not it was worth it to pay for the repairs. The next step up in devices costs approximately $7,500, and it was doubtful that insurance would pay for another.

Enter the iPad.

IPad you say? Indeed. We purchased a refurbished model when the iPad 2 came out. If it didn’t work for speech, it would surely work for something educational. You can buy tons of AAC (Augmentative and Alternative Communication) apps for iPods and iPads. Part of the problem is that most of them suck. There are some exceptions, but I think they prove the rule. These apps are made by very dedicated individuals who love their kids, don’t get me wrong. They may or may not consult with speech therapists and I’m awfully certain don’t ever consult with UI or design experts. They’re limited in options, difficult to navigate, and confusing for teachers and students alike.

We had him reevaluated at the same clinic where they’d recommended his first talker. I point this out, because it’s important to get some expert opinions involved before you go spending hundreds of dollars on apps. Given our monetary constraints, they recommended we try Proloquo 2 Go, a $189 iPod/iPad app. That and the slightly more expensive (for the whole package) TouchChat were the only two apps they recommended. I’ll toss in that the free Verbally app works great for fluent readers who don’t need picture supports.

How does it work?  Well, for my son, it’s been an interesting week. I expected him to explore the icons and learn to navigate the system. Instead, he’s been switching to keyboard mode and trying his best to type out everything, including words he doesn’t yet know how to spell. He’s absolutely fascinated when you type out a new sentence for him and he can hear it  spoken.  I’d call that a win.

Is The Vaccine Injury Compensation Program Covering-Up An Autism-Vaccine Link?

immuzation-image-475x356For years—at least a decade, as it was a question among the psychology community when I studied abnormal psychology about one decade ago—there have been questions regarding why autism rates are rising. One of the many theories is that rates are not rising. Instead, the medical community has gotten better at recognizing and diagnosing Autism Spectrum Disorder (ASD), coupled with a much expanded definition of ASD.

The last two weeks were really cool for me. Two exciting studies were released regarding autism. One study out of the UK indicates that autism rates in adults are the same as those in children. Many of the subjects of this study had no idea they fell under the spectrum, nor had they ever been diagnosed with autism. Another study out of South Korea, indicates higher rates of ASD in South Korean students—2.6% compared to 0.9% in the US—simply as a result of expanding testing to include students who are not considered to be in high-risk groups. Both of these studies are excellent starting points to answering the question, “Have ASD incidence rates increased or are we just more aware and therefore doing a better job diagnosing it?”

This good beginning was overshadowed by other autism news.

Last week, a number of press releases went out stating that a new study, published in the student-run Pace Environment Law Journal, proves a vaccine-autism link. Quoted from one press release:

“As this study shows, vaccines can and do cause brain damage and subsequent autism in certain children,” said Fournier.

Another press release stated:

The question is no longer, “Can vaccines cause autism?” The answer is clear.  Now, we have to ask, “How many cases of autism have vaccines caused and how do we prevent new injuries from occurring?”

Before I speak to this study, I want to make it clear that there are known risks to vaccines, including seizures and encephalopathy. These risks have never been denied and vary depending on the vaccine.

I want to make it clear that immunization is not 100% effective. Depending on the vaccine, these rates vary. Also, not all vaccines provide lifetime immunity and booster shots are required. However, if you want to weigh the risks of severe complications from the disease—1 in 1,000 die from measles—compared to the rate of severe complications from the vaccine—Encephalitis or severe allergic reaction: 1 in 1,000,000. Seizure: 333 in 1,000,000 from MMR—the odds are in favor of the vaccine.

This study did not show vaccines can and do cause brain damage. It was an already known fact that has never been denied or disputed. In fact, with every single case sited in this study, the reasons for compensation were due to seizures and/or encephalopathy. None were awarded compensation because the child became autistic as a result of immunization and this study states as much.

In the introduction, the authors state (page 4):

This assessment of compensated cases showing an association between vaccines and autism is not, and does not purport to be, science. In no way does it explain scientific causation or even necessarily undermine the reasoning of the decision in the Omnibus Autism Proceeding based on the scientific theories and medical evidence before the VICP.

What the conclusion actually states is (page 53):

While there are likely many routes to “autism,” including prenatal neurological insults and toxic post-natal exposures, this preliminary analysis of VICP-compensated cases suggests that autism is often associated with vaccine-induced brain damage. It raises the questions if the VICP’s decisions have been fair to reject all claims of vaccine injury that use the term “autism.” This preliminary assessment also suggests the possibility that other contemporary childhood neurological disorders, including attention deficit disorder and learning disabilities, might be less severe after-effects, on the same spectrum of vaccine-induce brain injury.

Based on this preliminary assessment, there may be no meaningful distinction between the cases of encephalopathy and residual seizure disorder that the VICP compensated over the last twenty years and the cases of “autism” that the VICP has denied. If true, this would be a profound injustice to those denied recovery and to all who have invested trust in this system that Congress created. This preliminary study calls for Congress to investigate the VICP and for scientists to investigate all compensated cases of vaccine injury to gain a fuller understanding of the totality of consequences of vaccine injury.

Also stated by the authors (page 14):

Because autistic disorder is defined only by an aggregation of symptoms, there is no meaningful distinction between the terms “autism” and “autism-like symptoms.” This article makes the distinction only to accurately reflect the terms that the Court of Federal Claims, caregivers, and others use. It is not a distinction to which the authors attach significance.

The problem with the above statement is that there is a significance, especially as there are a number of disorders that can appear like autism, having many things in common with autism, but are not autism. This is a very dangerous way of thinking. Imagine if the medical community had this type of thinking when it came to treating any disease or disorder that shares traits with, or has a tendency to mimic, other diseases and disorders.

All the authors did was search a database for specific terms and compiled the search results together, then try to report a causality link, while acknowledging that the legal standard of causation is not the same as the scientific standard. Using their method, I could pick any word I wanted, one that I know is in the database, then create a paper designed to show causation.

Another thing that is very important to know about this study is that two of the authors represent clients who have claims on behalf of family members in the Vaccine Injury Compensation Program. This is not an independent study. The authors are biased. The authors have a vested interest in the outcome. Also, all authors are on the board of the Elizabeth Birt Center for Autism Law and Advocacy, which is an autism advocacy group.

The authors also state that they had help from Pace University Law School. One press release—the original has subsequently disappeared from the internet—stated:

Investigators from Pace Law School in New York will be joined by parents and children with autism to announce a groundbreaking study that strongly suggests a link between vaccines and autism.

I spoke with the media relations department at Pace University Law School,via telephone and e-mail, and was told that was not the case. To quote:

Pace Law School had no participation in the paper. Pace Law students assisted with legal research of the vaccine court decisions and creating an objective database of the case holdings and facts, but neither Pace Law School nor any of our students had anything to do with the article or its findings or conclusions nor do we express any opinion on the article or its findings.

Furthermore, as published on About.com and confirmed by myself, via telephone and e-mail:

The article, titled, “Unanswered Questions From the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury,” is authored by four board members of the Elizabeth Birt Center for Autism Law and Advocacy. It will be published in the Winter 2011 edition of the Pace Environmental Law Review, Volume 28.2. It will be available May 10 on the Pace Environmental Law Review’s website.

The article’s authors are Mary Holland, Research Scholar and Director of the Graduate Legal Skills Program at NYU School of Law; Louis Conte, an independent investigator; and Robert Krakow and Lisa Colin, attorneys in private practice who represent clients who have claims on behalf of family members in the Vaccine Injury Compensation Program. They are all on the board of the Brooklyn-based Elizabeth Birt Center for Autism Law and Advocacy, which provides training, resources and a forum within which to advance legal and advocacy strategies to improve the lives of those with autism.

Established in 1982, the Pace Environmental Law Review (PELR) was one of the first scholarly journals in the then-new field of environmental law. It is run and edited by Pace Law School JD candidates. Since August 1, 2009, the law review has used an anonymous peer review process to select articles for publication. Submissions are reviewed internally, and then forwarded to a selected group of peer reviewers: academics, practitioners, and experts in the field, including members of Pace Law School’s world-renowned environmental law faculty.

The way in which SafeMinds.org has presented this study is very misleading. Not a single thing about this paper, or the involvement of Pace Law School, has been represented accurately. How many parents are going to take the time to read the 66-page paper or are they just going to listen to the press and believe the presentation? How many of the parents who do take the time to read the study are going to be able to understand it? Not every one has a background or education in research. Without such a background or education, reading these types of papers and interpreting them correctly can be quite difficult.

The result: More fear and panic surrounding vaccines and autism. Instead of funding other possible causes such as: genetics; environmental; and whether or not there is an actual increase in autism spectrum disorder or is it because of a broader definition and are we just better at identifying it, more funds are at risk for being diverted to researching questions that have already been answered.

As a parent, I know we want nothing more than for our children to be safe. On a daily basis, we do things to protect them. Many of the things we do carry a higher risk than the possible severe adverse reactions of immunization, plus they are not nearly as effective as immunizations. Using a seat belt is one of many examples. Seat belts are shown to be only 45% effective in reducing the risk of fatal injury to front-seat passengers. Child safety seats are 71% effective for children younger than one year old and 54% for children 1-4 years old. Seat belt use is also shown to increase the risk of abdominal injury. Immunization effectiveness ranges from about 80% to near 100%.

I can also understand why so many parents are wanting more transparency. When I was preparing to write this article, I asked a group of moms whether or not they felt they received full disclosure when vaccinating their children, if they understood the risk and if they didn’t feel they received full disclosure, would they have made a different choice upon receiving it. The responses were pretty much split down the middle between those who felt they understood the risks and those who did not. I know this is not a scientific survey in any form.

I asked because I wanted to know what it is like for a parent in the US to navigate this issue. I needed to understand this as I’ve always been aware of the risks and I am often baffled by why there is so much confusion surrounding this issue. Living in Canada, our system is quite different. Every thing, from how and where vaccines are administered, to how reactions are reported, to how data about vaccination rates are collected, is different. My boys were born in 1995 and 1999. Before there was an autism-vaccine scare, I received more than enough information during their immunization appointments to make an informed and educated decision.

I also decided to search the internet for US-based, parent-friendly equivalents to the resources residents of British Columbia receive for free. I asked Leart Shaka, the editor-in-chief of The Vaccine Times, to send me links to sites containing the information I was looking for, as it appeared my Google-fu was weak that day. I discovered that my Google-fu was not weak. The reality was there is nothing US-based that presented the information I was looking for in, what I would consider, a parent-friendly way. They were all a hassle to navigate, difficult to find the wanted information and contained things that turn me off, such a celebrity endorsements or things being sold on the front page. To say it was frustrating is an understatement.

I invite you all to visit the ImmunizeBC website. The site is easy to navigate. The answers are short and sweet, in easy to understand language, with links to more information. On the front page, you’ll find the answers to the two most common questions asked today: “Is there any link between the MMR vaccine and autism?” and “Will multiple injections overwhelm my baby’s immune system?”

I am not a doctor. I cannot give you any medical advice. I can say the science has shown, time and time again, that there is no link between vaccines and autism. It is also important to understand that when you vaccinate your children, you are not only protecting them but those around them. There are some people who cannot be vaccinated for medical reasons. They rely on those around them for herd-immunity.

Our generation has been lucky to grow up in a time where we did not see the effects, first-hand, of the diseases that vaccines protect us against. Our parents’ generation was not so lucky. I had a teacher who was crippled because of polio. It would be terrible if we had to see these effects, once again, in order to get the necessary incentive to protect our children from these diseases. Already, the cases of measles and whooping cough have increased in the United States, with nearly 50% of those who contracted measles in the last few months ending up in hospital and a number of babies hospitalized and dying from whooping cough.

Many argue that we should have a choice in this area. My personal opinion on that issue, and it just that, an opinion, is that when it concerns public health and safety, we do not have a choice unless there is a medical reason why one cannot be vaccinated. We don’t allow people to drive while under the influence. We don’t allow people to drive without a seat belt. There are many things we do not allow because, to quote Gene Roddenberry via Spock and Kirk, “The needs of the many outweigh the needs of the few… or the one.”

I will not tell you to vaccinate. I will ask that you please speak to your doctor or local health nurse. Through immunization, you are not only protecting the life of your children, but also the lives of those around you.

In the interest of full disclosure: I am the layout and design editor of The Vaccine Times, a quarterly print-publication, by parents who are trying to find out as much information as they can about vaccines and vaccine preventable diseases. I volunteer my time and resources, and receive no compensation for doing so.