Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

An Action Plan Worth Noting (& Learning From)...

Perhaps this is something we (mainly our government) in the U.S. could learn from. I hope it is successful, and other countries will follow Wales' lead. From BBC News:

A strategy to help people affected by autism in Wales is set to be launched, with the Welsh Assembly Government claiming it to be a world first.

The action plan aims to improve services in health, social services and education - and expand into areas of housing, leisure and general society.

The assembly government has pledged £1.8m for the programme's first year.

Improvement in health and social services, education, and areas of housing, leisure, and general society. Isn't that a great place to put money?

Edible Awareness???

Pretzels??


Autism Awareness????

Has anyone seen these yet? Better yet, has anyone eaten one? Now I'm a big fan of pretzels, but I don't think I could bring myself to eat these. From the Bachman Company website:

Our 100 calorie packs are all natural, low in fat and cholesterol free. Solve your snacking puzzle with this good for you delicious pretzel. The Bachman Company has been and continues to be a proud sponsor and active supporter of Autism Speaks we are donating 5% of our proceeds from the purchase of this product to Autism Speaks.

Interesting to note, is that Bachman lists their gluten-free products, and guess what? These puzzle-piece pretzels apparently are not gluten-free. Is that ironic or what? Kind of like when Rice Krispies was involved in an "Autism Awareness" campaign.

The puzzle pins (which, it seems everyone from actors to coaches wants to wear), ribbons, magnets, even toothpaste (another irony, since the toothpaste was apparently not gluten-free either, and also contained fluoride, yet another supposed--and unproven, cause of autism), and jewelry were one thing. But edible puzzle-piece pretzels? Seriously? Exactly what kind of "awareness" will come from this?

I can only imagine what will be next...

Seriously, Jenny

I just caught Jenny McCarthy's interview on E!'s Chelsea Lately show. Here is the link (bad language warning). Really now, it is frightening who we have speaking to the public about autism and supposedly representing "us."

She talks about how she asked Mormons to come pray for her "sick" son (and how when your child is sick you'll decapitate small animals, hmmm...). I wonder if this is before or after she discovered her child was a Crystal? To say that Ms. McCarthy was desperate for some type of hope for her and her son, is an understatement. I've never seen someone speak so frantically over their child's autism. No wonder she hopped onto the DAN bandwagon, and now is so 'into' TACA & Generation Rescue. One can only speculate what she may discover next, what group she'll become immersed in. Perhaps Dr. Carley will win her over?

We're not all screaming "HELP US!" At least we're not looking for the "help" you have been shoving down our throats for months. The help I want, is knowing that my school district has the proper resources and is giving my child all she needs to achieve her potential. The help I need is programs for my child and many others as they reach adulthood. I need help with transition from the school system, will my child have the opportunity to attend college? Will she be able to live independently, will there be housing options available to her? Is there vocational training available, and who will hire her? Will she be able to attain medical care, psychological services, etc. from reputable physicians? How will the world view an autistic adult in 10-15 years? If changes are not made, how many autistic children growing up today will be homeless in their 20's, 30's, or 40's?

She goes on to give the number to the White House, asking viewers to call and ask for the resignation of Julie Gerberding, CDC Director. Chelsea suggests telling the White House, "Julie Gerberding suck it hard!" and Jenny adds, "I was going to say aka the Devil." Nice. Later on, Jenny says she hopes "we create a major s**tstorm," over this issue. Lovely, now that's classy. I'm so glad that the public will look to Jenny and feel she represents all autism moms. I can only imagine what the media coverage will look like on that weekend in June when Jenny and her fellow Generation Rescue drones will descend upon the CDC. I wonder if their posters will have signs with the above mentioned quotes? Should be quite a circus.

The interview ends with Jenny stating that we (us autism moms) live in a kind of hell. Not me, no way, not by a long shot. Jenny, you want to know what hell feels like? For us, it was watching our child lay lifeless in the PICU. She had tubes coming and going, tests round the clock, she was essentially in a coma and no one knew why. We thought we were going to lose her. Jenny, that is hell, fearing that your child is going to die and you can do absolutely nothing about it, except pray every minute. Get some perspective. Life with autism is not this nightmare you are selling to whoever will listen to you. It's amazing that celebrities feel they can actually relate to moms in regular America. None of us can just go do a photo shoot to make some more money to cover our child's therapy. We don't have access to the press to speak up about our concerns and get funds raised toward what's really needed. You simply can't relate to us, and again, "we" don't live in a "kind of hell." And, besides, with your son "recovered," what exactly are you whining about?

In the very end, they both state that the government has said that vaccines can cause autism, as just decided in a recent court case. Really? Which court case was that, did I miss it?

The Money Trail...

Where will all the money raised by Toys R Us go?

Autism Speaks and Toys R Us have had a relationship for over a year now. This year, it appears, they are going all out. Which, like I said earlier this week, one can only wonder what all will come in April. In addition to the in-store donations, "the world's greatest toy store" is also accepting them online. At the time I write this, $539,448 has been raised (which, is up over $20,000 from the $519,229 they were at when I began drafting this last night). They are raking in, on average, more than $30,000 a day. Given that, they very easily could raise over 2 million dollars. This campaign began on March 2nd and continues until May 2nd. We all know where this money will go to: research, research, research--the Autism Speaks mantra. Of course, some money will go toward entertainment, catering, private jets, salaries to people like Allison Tepper Singer, and who knows--maybe an Autism Everyday Part II? Read about it on the Autism Speaks' website (their 2006 report, I can't wait to read 2007's). As Lisa Jo Rudy writes,

"Personally, I'm encouraged to see community grants and insurance issues are making it to the front page of the Autism Speaks website - though I'd love to see the organization create a division dedicated to living - and thriving - with autism."

We shall see if Autism Speaks ever gets a clue and decides to actually support autistic individuals. Then perhaps so many of us wouldn't cringe when we checkout at the Toys R Us, turn on Oprah, or see that the Sundance Channel is premiering "Autism Everyday" on April 2nd. I won't hold my breath though. Here's how they prioritize those living with autism, as per the "goals" statement from their website:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Notice the order:
1. make LOADS of money for research into causes, prevention, treatments, and cure
2. raise public awareness (via depressing "documentaries" apparently)
3. and, if and when we get around to it, "bring hope to all who deal with the hardships of this disorder"

They never actually say they want to help autistics, or create programs for teens and young adults, or support job-training, independent living, etc. for adult autistics. Bringing hope is a rather broad term. What hope exactly are they bringing? That one day a "cure" might exist, or that prenatal screening will be available? Once again, painting the bleak picture of the "hardships" we live with is getting rather old by now. Now compare Autism Speaks' goals with The National Down Syndrome Society's values and The National Autistic Society's vision and mission statements. Keep in mind, also, that the NDSS began in 1979 and the NAS has been around for over 35 years.

I'm not sure what "puzzle" Autism Speaks wants the public to think they are concerned with solving. To those of us who take personal offense by their messages and continue to receive zero support from them, we understand what this "puzzle" is. They promote the idea that if your life is touched by autism, you are miserable, your child has been "stolen," you are in debt, your marriage is falling apart (if it hasn't ended horribly already), and your life is one long nightmare. When you combine those viewpoints, the statements made by the "leaders" of Autism Speaks, read over what research their money is going toward, and see their tax return, it becomes clear. The puzzle they are struggling to solve is how to end any future generations of autistics. They want nothing more than to annihilate autism, all together, all of it--all future autistics, and frankly nothing else. They've even convinced politicians like Hillary Clinton to make public statements about working to "prevent and cure anything along the Autism spectrum." As for the autistics living (and thriving!) today, well, let's just disregard them altogether.

Autism Speaks could learn a lot from The National Down Syndrome Society and The National Autistic Society. The day that Autism Speaks actually reaches out to Autistics, and makes supporting those individuals a priority, then perhaps I would like to "help autism" at the check-out line.

Would I like to "help Autism?"

Good question. Not one I expected to hear at the toy store. Would I like to help autistics gain acceptance and reach their individual potential? Absolutely. Is Autism Speaks doing that? Not at all.

After surviving a trip to Toys R Us with my two kiddos, we were checking out. I heard the word "autism" uttered while I shopped, and wondered why. I was oblivious, walking through the store with my girls, of all the signs like the one above. I wonder why? Hmm..two girls, tons of toys for them to rummage through, and the occasional meltdown. Perhaps that was it? Or maybe I just never expected to see Autism Speaks' propaganda displayed throughout a toy store.

So, we are paying and the checkout associate says to me, "Would you like to donate a dollar to..."

And I am thinking, "sure!" I often give a dollar or two upon checkout--for diabetes, heart disease, cancer, and the local children's hospitals. The woman continues,

"...to help Autism?"

I actually let out a "hah!" It was just a funny question to be asked, given the company I was in. It took a second for the question to really set in. The woman looked at me oddly. I looked around, and then asked "where does the money go?"

"Autism Speaks" and as she said that, I saw the big puzzle poster above the register.

I say to her "no, thanks, we have other..." and I trailed off, realizing two things:

a. this woman was only doing her job & I got the idea she didn't care if I donated one way or the other
b. how much time do I really have to explain why I don't agree with Autism Speaks?

My older daughter looked up at me, and I knew what she was thinking (why don't you want to "help Autism" mom?). I bent down and whispered in her ear that we prefer to help in other ways. I think she too was amazed that "autism" came up while we checked out at Toys R Us.

As I finished paying, I saw a big roll of stickers by the register. They had the infamous puzzle piece, with the words "Autism" and "I helped solve the puzzle," along with the Autism Speaks and Toys R Us logos. It was at once surreal and all rather humorous to me (I have a sick sense of humor at times). The posters, the stickers, all of it.

So, we left with our bags. I paused in the exit area, and snapped the picture above with my cell phone. I'm not quite sure what to think of the poster. I suppose I should be glad that these pictures were not used:

or

Those two often pop up if you Google "autism" in images. The first was used in an ad campaign by NAAR (now merged with, guess who, Autism Speaks). It's disturbing, actually, when you search for autism images. The majority are dark and depressing, others shout that mercury is poisoning our children. Pictures really are worth a thousand words. Unfortunately, from Autism Speaks,' TACA,'s and other similar groups' perspective, pictures are worth thousands of dollars and that is all they are concerned with.

The cute little boy, covering his face and all the puzzle pieces, plastered throughout Toys R Us? I honestly don't know what to make of it. I suppose I'm glad this image is different from the many others. The child is making eye contact, for one. I think having him cover his face was an attempt to make him look embarrassed, trying to hide (his autism?). But, as a parent, I saw a playful look, perhaps peek-a-boo or peeking while playing hide-and-seek?