Savage Ignorance

Unless you've been hiding under a rock (or on the road traveling like me), you have heard of the ridiculous comments made by radio talk show host Michael Savage about autism.

From several sides, his comments are offensive--and very flawed. Let's start with this claim that in "99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is..."

Really? That has got to be one of the most ignorant statements I've heard with regard to autism (and trust me, I've heard plenty). So, Mr. Savage, you mean to tell me that only 1% of the children who are diagnosed with autism--who attend special programs, therapy, etc. for their autism--only 1% are actually autistic? Based on those odds, it's very likely that in his mind, my daughter or anyone of her classmates must not have autism, or the kids who attend the same therapy center, most if not all, are not autistic. Right, that makes perfect sense Mr. Savage.

Then there's the fact that he views autism as a "fraud, a racket." I'd love to hear how exactly he concluded this. Is my daughter acting, putting on a show? Are we as a family gaining something from some sort of sham, from "faking" autism? Exactly what kind of "racket" do we have going on? I'd love some explanation--but again, these are some of the most ignorant and nonsensical statements about autism I've ever heard.

He spirals even further downward, placing blame on the fathers (which is an interesting twist, typically it's us moms who get the blame from misguided people). Apparently, Mr. Savage also is unaware of girls like mine, who are also autistic. His rant centers around the idea that boys are not being yelled out by their fathers, and that's why they are being diagnosed with autism. Fathers, according to Savage, should tell their sons:

"Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

This was especially disturbing to me. Not too long ago, autistic children were called many horrible names by the medical community. Today, sadly, there are too many in society who still refer to our children with vicious insults. The words "putz" and "moron" (and "dummy" which Mr. Savage also said later on) were bad enough, but "idiot" really enraged me. Years ago, my child would be labeled an "idiot savant." She has an extremely high IQ, uneven skill sets (splinter skills), yet her social, adaptive, and communicative skills are rated in the very low to low range.

I never thought much about the word "idiot," it easily rolls of the tongue of most people. But in the last few years, it's had new meaning to me. Our neurologist first said "idiot savant" following our child's first IQ test, explaining how a person could have a genius IQ along with developmental delays, etc. We were utterly perplexed by this concept. Our neurologist said "the outdated term you may be familiar with is 'idiot savant'." I know how society used to treat "idiots" and "idiot savants." I also know how history has a way of repeating itself. This is not a word I would ever use in reference to autism or autistic individuals. Shame on you, Mr. Savage!

I would invite Mr. Savage to come stay with our family for a week, or even a day. Then perhaps he could enlighten me on how we were benefiting from this autism "racket," and how my child was really just a "brat." Maybe he could show my husband how better to berate my child, so she wouldn't act the way she does. I wonder what Mr. Savage would say to the neurologist, psychologist, developmental specialists, pediatrician, special ed teacher and para, and multiple therapists who see my child, have diagnosed her, and so on. Are they all in on this sham too? I am curious to hear this man's recommendations.

Savage's comments are, at best, a big fat waste of breath. I considered not even writing about them. They are ridiculous, and not really worth my time. However, Mr. Savage has a huge following (upwards of 10 million listeners) and therefore his words can alter millions of people's views on autism. That can be dangerous. The last thing we (autism families, autistic individuals, and society as a whole) needs is more stigmatizing, stereotyping, and mocking.

Where Is All The Autism Awareness?

This is a new story, yet the theme is nothing short of disgustingly familiar. Another autistic child being kicked out, this time from an airplane. We've seen this play out time and time again, with children being booted from school, church, the movies, and Boy Scouts. Where is all the Autism Awareness?

Here we are, trying to live our lives with our children. And all too often, the treatment we receive from those in society ranges from rude to cruel. The stares, snickers, and whispers are one thing. But lately, it seems the job of parenting an autistic child and that of simply being an autistic person has become increasingly more difficult. The message that we, and our children, are an inconvenience and need not be tolerated is becoming quite clear. There was a time when it was thought community was where you turned to when you needed assistance. The idea of reaching out--whether to your church, your school, or other community groups, seems more difficult for autistics each day.

Now, I will say, I look at things on both sides. In fact, prior to my experiences with my youngest, I may have agreed with the airline's position. I may have believed that kicking this mother and child off the flight was the only option. And to any who feel this way, I say walk a mile in our shoes. I have seen time and time again, the intolerance toward autistic people, and people with disabilities in general, is shameful. I am not surprised that this flight crew was forceful and abrupt, and that they did not attempt to work with this mom and her son. It was only a few weeks ago, that AutismVox wrote about an incident in the security line with her son. What more is needed, for society to become tolerant of our children? The sad truth is, most would prefer we keep our kids away.

With all this "autism awareness" everywhere, I ask you this: where is all the understanding? Does it matter that someone knows what autism is, or the figures 1 in 150, or that Jenny McCarthy "recovered" her son? No, obviously it doesn't. It's gotten us nowhere. Proper care is still very limited, we are still lacking in options for teen and adult autistics, services are frustratingly limited. Autistic children and adults are being abused and killed, as I wrote about recently. Autistic individuals, and their families, are discriminated against. All of the money raised in the name of "autism awareness," all the signs at Toys R Us, the pretzels, the CNN coverage...and where has that gotten any of us?

Autistic and Proud

If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.

Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.

"We really try and understand him on his own terms," she said.

That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.

The interview ends with Kristina saying this, a beautiful message that we all should remember:

"Acceptance, to me, is the beginning of hope," Chew said.

I want to thank Ari Ne'eman and Kristina Chew for their wonderful interviews. I truly feel these messages are what will lead to change for our children and for adult autistics. I applaud ABC, along with Deborah Roberts, Michelle Major, and Jonann Brady for doing this piece. I hope it is only the beginning of many more.

Neurodiversity on Good Morning America?

I ran across this today and wanted to share. I'm awaiting confirmation via email as to whether this is something ABC really is doing.

From "Good Morning America":

Good Morning America is doing a report on autism activism and neurodiversity. As part of the story, we'd like to include a photo montage of those who are a part of the community. If you or anyone you know is a part of this community and would be willing to be shown in the photo montage that would appear on Good Morning America, please send us your photos. The photos will provide a visual example of the diverse group of people behind autism activism celebrating the voices of autistic people. Please send the photos to Michelle.d.major@abc.com Thank you!


Edited to add:
Thank you to Angela and Camille for the confirmation. Bravo to ABC, let's see how it turns out when the cameras actually roll. Updates to follow...

Is it autism--or isn't it??

This one from ABC News especially caught my eye. The article itself isn't anything earth-shattering, but I was impressed by the link to the National Network for Immunization Information on the bottom of the article (above the TACA link, and in bold no less). Kudos to ABC for being balanced on this. What really struck me, was the video of Jim and Jenny's interview from Good Morning America. This particular part, when Diane Sawyer is narrating how Jenny's son "recovered" from autism:

"but doctors now say he was likely never autistic to begin with. Undaunted she remains an advocate fighting for Evan and other children..."

I wonder--is it doctors that ABC consulted with for the story, or physicians who are familiar (as in face to face) with Jenny's son? I think we are owed clarification on this. This idea, of children being wrongly diagnosed with autism is something I've visited before in the comments at Autism Vox here (and my other statement). I think there are children who have dietary sensitivities and allergies, who have some autistic-like (or ADHD-like) symptoms. Perhaps they get prematurely diagnosed, when really the issue is something else. Now, I will say this, in an environment of acceptance and love, a premature diagnosis doesn't necessarily do any harm to the child. I don't think there is any child who would not benefit from, say, speech or occupational therapy, etc. Harm can occur, however, when parents (and Jenny is not alone on this one, far from it) claim that this diet or this treatment "recovered" or "cured" their child.

As in the case of Jenny's son, he apparently had significant changes when the GFCF diet was started. Perhaps his issue was sensitivities to foods and gastrointestinal problems. My daughter has had her fair share of G.I. issues. We have managed them rather well, our physicians are incredible. Had we not been on the ball with her tummy troubles, or had our doctors made wrong diagnoses, I imagine our child would be in tremendous pain much of the time. Luckily, most of her issues were addressed before she was two. For a child who cannot verbalize at all, or only limited, how does that pain get expressed? Through screaming, self-injury, etc. If a child has a speech delay plus gastrointestinal issues, this could very well look like autism.

But let's make one thing clear: having autism and having something "else," are two very separate things. There are children who may exhibit autistic-like symptoms or signs, as well as signs of ADHD, etc. when really there is a food intolerance or other sensitivity. For those children, diet alterations will make all the difference. For a child with autism, you cannot assume that dietary changes will add up to speech or any other drastic changes, let alone "recovery." I've yet to meet one parent in real life who has said "we started the GFCF diet, and weeks later my child was doing X." I have heard some parents say they think they've seen some small positive changes, and in one case, a mother felt her child's sensory issues were "a little better."

I'm not bashing the GFCF diet. I've known several people with Celiac Disease who are thriving due to it. I think it has its place. I also feel that if your child and your family can stick to such a diet, and if some positive comes from it, then go for it. Strangely enough, a lot of our foods are gluten-free (we shop at Whole Foods and such, these cookies are awesome!). However, it so happens that my youngest will not consume any of those foods (she eats about 5 different foods regularly, that's it). A few of the parents from my daughter's school also say they too are unable to follow the diet. Their child, like mine, may eat only one fast-food brand of chicken nugget, or a specific brand of frozen pizza, etc. Some of us have worked for years to get our child to eat anything resembling a meal. For us, if you simply present a new food on our daughter's plate, it will send her into a rage. She barely eats as it is. So, if anyone can realistically offer how to switch her to GFCF, be my guest. But, for some, if not many, of us, this diet is not feasible. And so I beg of you, do not point your finger saying we are failing our children by not following the diet--or any other "treatment." As the saying goes, walk a mile in my shoes...

Let me also say this--I'm happy that Jenny's son had so much improvement once he began the GFCF diet. That is fabulous. I hope he continues to do as well as he seems to be doing. I don't think there is a single parent out there who wouldn't love to give their child certain foods and within two weeks have that child be speaking. The world is a nicer place when you abide by what they have declared as "normal" and "typical." Don't we all want our kids to have an easier time in society? I have never and will never seek a "cure" for my child. That's not to say we haven't worked tirelessly on providing her with all she needs, on keeping on top of the school to ensure they are helping her, and seeking out the best (for our daughter) doctors and therapists. We don't want our child to have meltdowns, to gag at the mere sight of a certain food, to injure herself (or others), etc. And, yes, if it was as simple as altering our pantry, and my child would not have the struggles she currently has, I'd jump at that.

But my daughter's "autistic-like" symptoms are actually autism, and that's a major difference here. She isn't acting a certain way because of a belly ache, or allergies. The reality is that a lot of our kids are square pegs (and we embrace every side--even those sharp edges) and society constantly tries forcing them into round holes. For many of us, the answer isn't in diets or supplements, it is in parenting and working with our child, loving them unconditionally, and perhaps along the way, even rounding those corners just a tad. But more importantly, it is our duty to accept who they are, and work to make this world a friendlier, maybe even more square, place for them.

I am saddened that Jenny's preachings on autism and recovery make my battle (the one of acceptance for those on the spectrum and for the creation of programs for autistic individuals, especially adults) much harder. If you are going to represent the "autism community," let's be 100% certain your child is indeed autistic first though. And, I would also caution, as I have before, that when we describe an autistic child as "recovered," there comes great responsibility. Responsibility for those who never "recover" and the issues that stem from that (at best you are left with parents feeling like they messed up, kids feeling that they're never quite good enough). Responsibility for your child who you claim to be "recovered" when in a few years may no longer be able to wear that label. Many parents will tell you that the teen years can be very difficult for autistic kids. So, the child who seemed to be "doing so much better" can suddenly be a child requiring much care and services as a teenager. There's just a lot of burden that does, and should, come with announcing your child is "recovered," and especially at such a young age.

Ramblings this week...

The other day, I was flipping through the channels. I missed most of the interview (which, I can't say I was upset about!) with Deirdre Imus on Fox News. The banner on the bottom of the screen read, "Parents trace link between mercury in vaccines & autism." What they fail to mention in that headline, is that this link has no scientific basis. Once again, Mrs. Imus, just like Jenny and others, denies the possibility of a genetic link to autism. This perspective is somehow held onto by these people, despite real, hard evidence of various genes related to autism. Twin studies are very interesting to review. Here's what Deirdre had to say:

"...no such thing as a genetic epidemic & autism is an epidemic."

It was a brief piece, at least what I caught of it. What's unfortunate, is that Deirdre's irrational points, along with that ridiculous headline about a "link" between vaccines and autism, all got the last word. I was surprised the phone wasn't ringing, family and friends asking "did you see Don Imus' wife on T.V.?" Questions about the Omnibus cases, and also, I imagine, why the heck Mrs. Imus was involved with this debate. No one did call, so I assume they all, like I almost did, missed this brief snippet. One thing is for sure, the anti-vax message is spreading. For a while, it was found only on MSNBC, and then CNN, and now Fox. It's clear to see who has all the money--and what they are doing with it. Why ever would this elite bunch, with their cash cow organizations, want to actually help autistic people with the money they raise?

Something I found strangely ironic, was a while after this autism-vaccine piece, the show featured a comedy troupe in the U.K. (doing a Facebook sketch). This troupe is called "Idiots of Ants," which when pronounced aloud is, "Idiot Savants." I imagine that no one at Fox News understands the irony. Well, based on statistics, perhaps at least one person on the production crew, in the back office, or in the studio got it, if their child is also autistic. The term "idiot savant" is no longer used, but was once how autistic savants (and in general, most savants) were referred to. Webster's defines "idiot savant" as

"a person affected with a mental disability (as autism or mental retardation) who exhibits exceptional skill or brilliance in some limited field (as mathematics or music) —called also savant"

This thought came to me tonight, amidst all this autism-vaccine hubbub. What do the anti-vaxers have to say about Childhood Disintegrative Disorder? It was first documented in 1908. The fact that the symptoms and onset of CDD is very similar to regressive autism (age being the main differential), would make one wonder if they both have the same cause. Recently, there has been some written on autoimmune and environmental factors in CDD. However, since it has been affecting children since at least 1908 (and surely prior to a doctor identifying and naming it), one has to wonder if a vaccine link to CDD is truly feasible. Surely the children with CDD in the early 20th century were not vaccinated. Curious...to me at least.

Kids' Autism Awareness

I recently purchased this book, The Autism Acceptance Book which I think is a really great book (workbook as well). It's really wonderful for siblings, the first book that lets them "step" into their sibling's experience. For example, the book discusses that some people with autism may have a hard time talking. For each section like that, they have a "Walk in their shoes and see how it feels" part. For the talking section, they recommend this:

"Pretend you are in class and you can't talk. You have to go to the bathroom, but the rule is that you can't go unless you ask the teacher. How would you ask the teacher without using words?"

and then further down after listing examples like gestures and drawing to express this,

"If the teacher did not understand you or got impatient with you, that would be pretty frustrating, wouldn't it? Can you imagine how frustrating it would be to know what you want, but not able to say it?"

This was something that really helped my oldest. The book is very positive, and these "walk in their shoes" parts further a kid's understanding. I will add, as I've done before, that we always start our conversations on autism with our oldest as "well, you know any little brother or sister is a pain in the butt to their older sis or bro" and we recommend she just ask her (my husband and I both have older siblings) aunts and uncles about that. I think parents must be careful of "dismissing" every issue as part of autism. Granted, there are things that are, because my child is autistic or has other special needs. We openly address those. But, to harp on about how all the issues siblings may face are autism's "fault," is not proper.

The book is geared toward "being a friend" to autistic kids. At the end, this is written:

"Now it's your job to spread the word! Tell your friends and family how important it is to try to understand, accept, and include everyone."

My daughter has done more for "Autism Awareness" than most people I know. It's her simple kid-approach that is endearing to watch. It's the "yeah, my sister's autistic and has a mic-key on her stomach--so?" viewpoint of hers that is just awesome. She tells her friends "yeah, she gets really shy" explaining why her sister won't even look at, let alone speak to, any of her friends (as they all call out & wave to her). She tells them "she has a hard time eating and drinking, so her mic-key helps her do that." I have no doubt that as she goes through school and enters into adulthood, my eldest will have educated and opened more than a few minds. She is quite the advocate in her own right, and I could not be more proud of her.

April Is Over...

April is officially over. And all I can think of is John Lennon's "Happy Xmas (War is Over)" song...

So this is May First
And what have you done
Another month over
And a new one just begun
And so this is May First
I hope you raised funds
The near and the dear one
The old and the young


So what have you done?

$1,402,639 was raised thus far (assuming this is final amount, as campaign was said to end yesterday, May 2) from the Toys R Us/Autism Speaks campaign. It does not clarify if that is the online donations, or a combination of in-store and online funds raised. So what will Autism Speaks do with this money? And what will they do with the millions and millions they continue to raise? I urge Autism Speaks to help, the young and the old. Create programs and services, or create separate, smaller agencies to handle the needs of older children and adult autistics. That is what's truly needed.

I was glad the other day, as I checked out of the store, that this was the last time I'd see these. At least for now. At least until next April...






I didn't feel obligated to do anything for "Autism Awareness" month. Sure, I blogged on it, I watched CNN on that day, I read some articles and studies, I watched some documentaries, I spoke to family and friends, I was inspired, and, of course, lived each day, quite "aware" of autism. We make people "aware" of autism (& also of things like seizures and feeding tubes) whenever the situation presents itself. Perhaps at the playground, a friend's house, or elsewhere. I don't feel it necessary to educate every person I come in contact with. Mostly because, I am raising two young children--a handful enough out in public. I simply don't have time to give even a mini Autism lesson to the strangers who may stare or whisper. And, to be honest, that reaction typically only comes following two things: a meltdown or if they see my child's feeding tube. Both times, I'm fully engaged in my child and don't have a moment to be concerned with others.

People generally smile, even if they appear perplexed, if they catch my child "stimming." I don't think they see a child jumping or walking in a circle or even flapping and think "autism." They most likely see an excited child, perhaps a hyper one, and usually a happy one. For some, if they know what "stimming" is, they may see that, but then they'd also understand it. So, did I do my part for the month of April? I'd say yes. But then again, I do that same "part" every month of the year. And the biggest bit on "awareness" you'll hear from me in person is the need for adult supports, respect for autistics, and the disgusting reality of eugenics.

One of the COOLEST things I came across during "Autism Awareness" month was here, please check it out.

NASCAR & Autism Speaks: Maybe Some Potential Here

NASCAR Race to Benefit Student Clubs for Autism Speaks:

DOVER, DEL. (April 2, 2008) – Dover International Speedway and Best Buy officials announced today that the June 1, 2008 NASCAR Sprint Cup Series race will be named the “Best Buy 400 benefiting Student Clubs for Autism Speaks.” A variety of initiatives are planned for Dover's May 30 – June 1, 2008 NASCAR race weekend to increase awareness and raise funds for Autism Speaks. Last year's June NASCAR Sprint Cup event in Dover, also benefiting Autism Speaks, saw Martin Truex Jr. pull into Victory Lane for his first career win at the Monster Mile.

Student Clubs for Autism Speaks (SCAS) helps further the mission of Autism Speaks by creating the opportunity for students to engage and actively participate in positively affecting the lives of people with autism. Through education, awareness, friendship and fundraising, SCAS includes students at the middle school, high school and college level.

I had not heard about these clubs prior to this headline. There is plenty of information about Student Clubs for Autism Speaks (SCAS) on their website. There are a few issues I take with this program. The fact that "to fund global biomedical research into the causes, prevention, treatments and cure for autism" is part of their purpose statement, aggravates me. I've made it clear in the past where I feel this research looking into "prevention" and "cures" will end up.

Another issue, this club is essentially a mini Autism Speaks, one that's primary focus (again) isn't the inclusion and acceptance of fellow (autistic) students, but rather raising money. For example:

(a) Fundraising: All Clubs must field a walk team in their local Walk for Autism Research. Those outside of a Walk region should go to the Autism Speaks website for assistance. Other fundraising activities may be undertaken at the discretion of each Club.

What I do like is this part of the purpose statement:

...to promote an environment of acceptance for students with autism;

This should be the first and most predominate statement for such a club. Why can't we simply have a club that promotes awareness and acceptance, along with inclusion? A club that's members would welcome autistic kids, and truly become 'aware' of autism. Such a group could also be helpful for siblings of autistics. From their perspective, they could help educate the members, and it could also be empowering for them--knowing they were helping to pave the way for social acceptance of their brother or sister.

The messages that our children and teens are hearing with regard to autism will alter how they view autistics in their adult life. If your view on autism and autistics is negative, that you hate it, that it should be wiped out, you are teaching your children that when they come in contact with an autistic person they should stay away. When that same child is an adult, they won't hire an adult autistic, they won't vote for measures for support services for autistic individuals. The opposite is also true, thankfully. If you raise your child, teaching them compassion and acceptance of others, then they will reach out and say hello to their autistic peer. They will understand what autism is, and not run from it or from autistics. This child, when they are an adult, will gladly hire an autistic person, and see that services are available to those on the spectrum.

I'll have to see how these clubs evolve and change over the next few months and years, before I make my final opinion on them. From what I can tell, there are not many of these clubs nationwide--yet. It would be great if in time, the main goals for these clubs are to promote friendship and understanding between students, both on and off the spectrum. Only time will tell which direction this club, and Autism Speaks as a whole, will take (a shift and change in priorities is possible). There is some potential here.

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...

More Autism Awareness (a film, a study, and a press release)

I came across these 3 interesting pieces the other day (none of which have anything to do with robots). One is about a new film premiering tonight, the second is about a new study, and the third highlights the 'other' autism awareness (you know, the one that actually tries to help autistic individuals and their families, not the "vaccine awareness" or "Autism is the worst thing that can happen to a family" or other campaigns touted as 'autism awareness' these days).




"Autism Yesterday"

The film "Autism Yesterday" (yes, obviously a shot at Autism Speaks' "Autism Everyday") will premiere tonight at The Holland Center in Minnesota. It is a Generation Rescue documentary, which "explores an emerging truth many parents are discovering: autism is a reversible condition..." The film features five families, chronicling "heart-wrenching stories of despair, hope, and recovery." You can watch the trailer here, and decide for yourself. You can read the complete article on www.bio-medicine.org.

Autism Diagnosis 15-20 Years Ago...

More support, it appears, for the theory that autism cases are not necessarily on the rise over the last 15-20 years, but rather physicians are better trained to diagnose, more services are available to identify those children, and that how the diagnosis protocol has changed. Professor Dorothy Bishop, a fellow at the University of Oxford, has completed a study worth looking into. It suggests that children in the 1980's and 1990's who were diagnosed with severe language disorders would be diagnosed as autistic today.

"We can't say that genuine cases of autism are not on the increase as the numbers in our study are very small," she says. "However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago."

You can find the article and more information on the study here.




Awareness on World Autism Day from Easter Seals.

Regrettably, I missed this on World Autism Day. It is the only press release by any major organization highlighting the need for adult services. Easter Seals has their own autism website, on there is a section entitled, "Stories of Hope." It's nice to see a charity showing adult autistics being successful and also thriving families who support their children.

In the event you missed it too, here are some snippets from their press release (full release is linked in the title above):

“World Autism Awareness Day provides us with an opportunity to help raise awareness about autism services and treatments available to families today and the need for the United States to share what it knows about effective interventions with other countries around the globe,” says James E. Williams, Jr., president and chief executive officer, Easter Seals. “There are a number of wonderful organizations researching and seeking a cause and cure for autism. Easter Seals is unique as the nation’s leading provider of services and support for children and adults living with autism.

Critical Need for Services
Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps.

“There is an urgent need for increased funding and services -- especially for adults with autism,” adds Williams. “We want to help change all of this and make a difference for families living with autism today.”

Finally. Thank you.

Autism Is Treatable
While autism is a baffling, lifelong disability, it is treatable.

“People living with autism -- at any age -- are capable of making significant progress through personalized interventions and therapy; and, can and do lead meaningful lives,” says Patricia Wright, director, autism services, Easter Seals.

Treatable doesn't always mean injections, chelation, and HBOT sessions. I think they are utilizing this term, simply because that is what people want to hear (treat my child, fix them) and it is more marketable (look who they are up against for raising money, Autism Speaks, TACA, etc.). I like the point Patricia Wright makes, about how at any age, autistic individuals can make progress. So many parents see their child as an hourglass, with time running out to help them. You wouldn't believe how panicked parents are when their child is a toddler or preschooler ("if he doesn't do X by 5 years, he'll never do it," or "I'm afraid I missed all this important time, since T didn't get a diagnosis until she was 4" and so on). It's a great point, and also that Ms. Wright adds "and, can and do lead meaningful lives." Bravo.

Easter Seals + Autism
More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working nationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating in Washington DC to encourage Congress to finance research to improve services and supports for people with autism.

I can easily support an organization wanting Congress to finance research that will improve services and supports for people with autism (especially adults). I realize I won't agree 100% with all their campaigns or messages, but their overlying theme is that of support for autistic individuals, with a focus, most importantly, on adult autistics. What other major organization even mentions "adults" and "autism" in the same sentence? Some spokespeople for these major groups aren't even aware that adult autistics exist. So, I'll find it hard to not support Easter Seals, even if I can't stand behind 100% of their projects or partnerships. The greater good that hopefully will come from Easter Seals' campaign will benefit ALL autistics. One of the bills Easter Seals is working to pass, is the Expanding the Promise for Individuals with Autism Act of 2007.

More Inspiration (from Joshua Eisenstat's family)

Thank you, to Joshua Eisenstat's mom, Selma, and his Uncle Doug for replying to my blog. I appreciate you sharing more about Joshua.

I had written on April 2 in a post entitled "The Best From Today," about Selma Eisenstat and her message on CNN about her son Joshua. In response to that post, I received two replies that further touched me. Selma herself, along with Joshua's Uncle Doug left messages. I wanted to share them with everyone, so they wouldn't be missed.

Thank you so much for honoring my Joshua on your blog. I happened to run across it today, and was overwhelmed. Joshua lives on in my heart and memory every day; and to have his influence live on the lives of others means more than I can say. I have hundreds of stories and memories that bring peace and joy to my heart. I loved my son with all of my heart, and every day I am thankful that I am Joshua's Mom. Thank you for making my day today.

Selma

And...

I'm Joshua's Uncle Doug. I was privileged to live with Joshua three different times during my life so we were very close and his death was very hard on me and our whole family. Every time I see another person that has special needs, I smile. Yes, I know its hard, but I too also know the joy. I remember one time that Joshua was having a really bad seizure and he kicked his Dad during the seizure and once he was out of it, he hugged him and said sorry.

He had that pure love as they all do. I agree with Selma, the road is hard, but it is so worth it.

Uncle Doug

I was so moved by each of their replies, and of course with the piece from CNN. I transcribed the piece for a fellow blogger who requested it (see original post, in messages section), as an amateur, so my apologies if I got something wrong. The last paragraph, Selma's powerful advice to others, is beautiful. This is something I wish every parent of an autistic child could see:

"When I hear the child being diagnosed with autism or being born with disabilities, I don't ever know if they would understand if I said, 'do you know how lucky you are?' I know it's gonna be a hard road, I know that, um, you're gonna have sleepless nights and you're gonna have many tears, 'cause I've had many tears. But, um, you get, I feel like you get a slice of heaven and a pure love in your home. You learn service and you learn, you just work together. Once you stop seeing what my child can't do, and you start seeing what they can do, it's a beautiful...I wish you could have met him, just cause I could feel your love for him."

Please visit the Joshua Eisenstat blog, for video, pictures, and more thoughts on Joshua's life. It's quite plain to see how very loved Joshua was, and how deeply those who knew him, miss him.

What Is Autism Awareness?

I wonder this, seeing as we are now about a week into "Autism Awareness Month," and a couple of days following "World Autism Day." How will such awareness affect my child, and other autistic children and adults throughout the world? Will new support services, better educational and vocational programs, beneficial extracurricular activities or anything else of real benefit come to this population of individuals? Will a day of special programming on CNN, fund-raisers at Toys R Us, etc. truly educate the public and make others "aware" of autism (and more importantly of autistic adults and their needs)? Will other parents be more understanding when my child has a meltdown in the grocery store? Will children be more likely to engage with their autistic peer? Will anyone gain anything from all this supposed awareness?

AutismVox has a wonderful post entitled, "Vaccine Awareness from David Kirby," in which Dr. Kristina Chew ends with this:

If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.

I couldn't agree more.

In Kirby's piece, he speaks out against the CDC, as well as pediatricians in general. Blaming your physician for giving your child vaccines is like blaming the McDonald's cashier for your being overweight. You have the right to educate yourself on the fat content in a Big Mac, just as you have the free right to investigate vaccines. You can easily opt to not go to the drive-thru, just as you have the right to discuss your concerns over vaccines with your physician. You have the right to opt for your own "vaccine schedule." If your child's doctor disagrees, or will not support your preference, simply switch doctors. I've had to switch doctors once for my daughter. Her first G.I. doctor was just not clicking with us, I felt like he wasn't hearing us out and preferred a lot of invasive testing over more obvious issues. So, we switched, and found a fabulous stomach doc for my daughter. It was my right.

Our pediatrician is nothing like those that Kirby says have emailed him, irate over having to take more time to discuss vaccines with their parents. I remember very clearly, my daughter's 18 month well-visit. At that point, my daughter had been diagnosed as "developmentally delayed" for a year, she had been in therapy for nearly that long as well. By 18 months, she had several diagnoses, both neurological and physical, as well as the description of "autistic features." I had read tons of information on autism by that point.

Once the exam was done, we had our questions and concerns discussion with our doctor. Then, came shot time. My physician presented me with a choice, "Do you want to go ahead and have her receive the MMR shot today? I'm going to give you a choice, given all that is going on. I feel she should receive it, but it is up to you." I told her I had read about shots, autism, etc. and felt that for my child, receiving measles would be a real risk. Maybe I am a rare case, and just lucky to have a fabulous doctor. There's a reason why we drive nearly 40 minutes for her. The bottom line is that we do have the option of picking new doctors, of driving distances to find people we trust to care for our children.

There are plenty of physicians who do not bully their patients' parents into getting vaccines. And, ultimately, it is our responsibility as a parent to do what we feel is best for our children. And, how we come to that position, of what we feel is right for our kids, should come from factual, scientific evidence. We shouldn't be basing our decision on vaccinating our children on a journalist's or actor's point of view.

The Best From Today

There were several good stories that came out of CNN's coverage today. This, by far, was the best. Please visit here, and play the story of Joshua Eisenstat, as told by his mother, Selma.

Thank you, Selma, for sharing your story.

Jim Carrey--Autism Expert??

Larry King read a message from Jenny's "mate" on his show:

"Vaccines are more of a profit engine than a means of prevention. And that's why there are so many vaccines."

Since when did Jim Carrey become an expert on anything in the medical world? On vaccines? On Autism? I realize he is the "Autism Whisperer," but wow, never realized he had received his PhD. To that point, why is anyone listening to a ditsy Playboy model? And, David Kirby, a PR person, again, not a physician or scientist. Really makes you wonder...

Jenny herself may need some medication (or perhaps she should try the GFCF diet, chelation, HBOT??). You don't go on Larry King, scream "bulls**t" to respected physicians, ranting and raving. Her voice is shaky, she really needs to sip some water and take a deep breath. I too get very emotional over my child. I have to really prepare myself prior to her IEP meetings. I bring a bottle of water, take slow deep breaths, read some inspirational quotes I have written in my notebook, and look at her picture I bring in with me. I remind myself continually to remain calm, regardless. I realize I will look like a raving lunatic if I lose my cool. I also am aware that if I get emotional and go off-course, nothing will get accomplished.

She wants measles over autism, any day??? Wow, is all I can say. She's been brainwashed by the conspiracy theorists, she is insisting that all the multiple studies on vaccines are whack, demanding an independent study.

Jim & Jenny are marching on June 4 for Generation Rescue/TACA Now, in Washington D.C. Joy. Gives new meaning to Dumb and Dumber. I'm curious if the walk in Atlanta, against the CDC is still on? I hope so, otherwise my plane ticket will go to waste (sarcasm!).

The Kirton Family RULES!

After several tense moments on Larry King (mostly Jenny, interrupting the sane members of the panel, yeah, she's a great public speaker), they introduced the Kirton family. They have 6 children who are all on the autism spectrum. Larry seemed disturbed by the fact that this couple continued to have children, he even asked that very question. He even seemed to throw in a little jab at Mormons.

They "keep having children" Larry King, because they LOVE children. They LOVE being parents. They LOVE their autistic children. That may be appalling or confusing to people who feel their autistic child kicked their butts, but indeed, this family actually loves having all of their beautiful, autistic children. Certainly, no one would tell this family to deny their deep-rooted religious beliefs. This, obviously, has been an important aspect for this family. We have freedom of religion in this country, and surely we can all agree that the Kirton family is afforded this freedom like the rest of us. It is cruel for any of us to judge this family.

Mom26children and her family have been subject to similar finger-wagging by those who feel they know better. Both families, by all accounts I have seen, genuinely love their children, acknowledge the challenges, battle through some tough times, and through it all they find happiness in their lives. I think this is why they are the focus of criticism. If the story was presented as these sad families, with multiple children on the spectrum, parents crying and pleading for help, lives out of control, I don't think there would be as much negativity. But when the media shows us a family who is making the best of things, with 5 or 6 autistic children, some groups shudder. It's awfully hard to argue how miserable your life is with your one autistic child, when a prime-time show has just profiled one of these families.

If one's main concern over the fact that either of these families has multiple children with autism is that they are a burden on society, that argument is off base too. Shall we put limits on how many children you may have based on income? Some families would struggle with 3 neurotypical children. Do we force them to be sterilized then, or have abortions should they become pregnant a fourth time? When it comes to families with autism, do we set a cap? Perhaps they can only have one subsequent child? What if that second child ends up not having autism, is this family allowed to have a third? What about families whose children have diseases, genetic disorders, etc? Shall we tell them also if and when they are allowed to get pregnant?

None of us have any right to judge these families or question their decisions. Personally, both are inspirations to me. I'm quick to say I "can't imagine how they do it." Yet at the same time, I know precisely how (some possible answers: love, acceptance, prayer). I applaud the Kirton family for stepping into the spotlight and telling the world their story (or, shall I say their 6 stories?). It was a nice contrast to have their video clips played during Larry King tonight.

The Kirtons are starting a foundation called AutismBites:

We are forming a non-profit, The AutismBites Foundation. We will be raising needed funds and passing them directly into the hands of Autistic parents for basic needs, home renovations to keep their children safe, for treatments and interventions to improve their children’s lives, etc... without a lot of red tape and hoops to jump through.

On causes, Mr. Kirton added that he feels there is a spectrum of causes, just as autism itself is a spectrum. Bravo to you!

**edited to add several paragraphs after I accidentally published this before I was finished. Also, I want to say the title for this, was because of how this family presented themselves on Larry King. They RULE because of the love they show their children, and how they move forward every day (doesn't appear to be many pity parties going on there).

ALSO...
Applause to the doctors (Drs. Harvey Karp & David Tayloe ) who are also on the show, trying their best to reiterate that the REAL science, real data, shows not vaccine-autism connection. If I didn't think that Kirby & Jenny could cause real harm to families, this would be comical. Between their lack of understanding for autistic adults, mantra of "you can recover your child/vaccines are horrible" (I loved when the doctor asked Jenny which disease she'd like her son to have!!!), and their abuse of the public forum for what is really needed for autistics (ADULTS services!!!!), they irk me beyond belief.

Say WHAT Dr. Poling????

Dr. Gupta just interviewed Dr. Poling on CNN (will link to clip once its available online). Dr. Poling seemed to say that Hannah has mitochondrial DYSFUNCTION not disease. This is utterly confusing. Based on the court documents, which gives the biopsy results, I am unsure how Hannah is thought to have only mitochondrial dysfunction. She was diagnosed with oxidative phosphorylation disease (see below), which is classified as mitochondrial disease (or disorder, depending on your source, but for this sake disease and disorder are synonymous, however dysfunction is much different), certainly NOT dysfunction. Just a few weeks ago, on Larry King Live, Dr. Poling was referring to Hannah as having mitochondrial disorder (again, not dysfunction).

On Age of Autism (to read copy & paste this: http://www.ageofautism.com/2008/03/dr-jon-poling-o.html), Dr. Poling then said this:

"Thus, I will refer to Hannah’s metabolic condition as a mitochondrial dysfunction, not a mitochondrial disease."

So, is he "opting" for dysfunction instead of disease? One can only wonder why. Compare that to what is in the court documents (available here: http://www.huffingtonpost.com/david-kirby/the-vaccineautism-court-_b_88558.html):

On October 4, 2001, Dr. John Schoffner, at Horizon Molecular Medicine in Norcross, Georgia, examined CHILD to assess whether her clinical manifestations were related to a defect in cellular energetics. Pet. Ex. 16 at 26. After reviewing her history, Dr. Schoffner agreed that the previous metabolic testing was "suggestive of a defect in cellular energetics." Id. Dr. Schoffner recommended a muscle biopsy, genetic testing, metabolic testing, and cell culture based testing. Id. at 36.

FYI: This (above) refers to the signs mitochondrial dysfunction (similar to what my own daughter has). Those results, prompted this testing:

A CSF organic acids test, on January 8, 2002, displayed an increased lactate to pyruvate ratio of 28,1 which can be seen in disorders of mitochondrial oxidative phosphorylation. Id. at 22. A muscle biopsy test for oxidative phosphorylation disease revealed abnormal results for Type One and Three. Id. at 3. The most prominent findings were scattered atrophic myofibers that were mostly type one oxidative phosphorylation dependent myofibers, mild increase in lipid in selected myofibers, and occasional myofiber with reduced cytochrome c oxidase activity. Id. at 7. After reviewing these laboratory results, Dr. Schoffner diagnosed CHILD with oxidative phosphorylation disease. Id. at 3. In February 2004, a mitochondrial DNA ("mtDNA") point mutation analysis revealed a single nucleotide change in the 16S ribosomal RNA gene (T2387C). Id. at 11.

Hannah showed signs of mitochondrial dysfunction, which led to the biopsy and other testing. Those results showed that she had oxidative phosphorylation disease.

I'm not being stubborn about semantics here. There is a BIG difference between DYSFUNCTION and DISEASE. So, Dr. Poling, what exactly does Hannah have--according to her test results? It is deceiving to say she has dysfunction when, it appears, that is not the case. Dr. Poling can call whatever his daughter has, whatever he wants. However, if he is going to be the spokesperson for autism-vaccines-mitochondria business, he needs to not blur the truth.

I think it's very possible that some children with regressive autism could have a form of mitochondrial disease, and certainly more would be found to have mitochondrial dysfunction (as it is found in many neurological conditions, see here, here, here, and in other studies available online). But to point fingers at vaccines, with zero scientific evidence, is shameful. Obviously, it won't hurt for scientists to look into any possible mitochondrial-autism connection, and if it means anything.
In our case, our daughter's irregular test results are all related to her static encephalopathy and autism, just like her seizures, and other health issues are all related. My daughter was born this way, vaccines did not effect her negatively at all. I am grateful to the vaccines, as they have prevented additional hospitalizations when she contracted chicken pox and the flu. Had she not been inoculated for those, her illness would have been prolonged and more severe. Instead, we were able to care for her at home, and she was sick for a couple of days with each.

One last note, this study showed that intense exercise can cause mitochondrial dysfunction. What doesn't cause mitochondrial dysfunction? And, can we really draw any conclusions from mitochondrial dysfunction, what it means to autistics, how it truly affects humans, and what (if anything) could be done to prevent it? Certainly not yet, and maybe we'll never know. There is a possibility that mitochondrial dysfunction means very little, when it comes to autism and treatment, and also possible that the majority of us would be diagnosed with it in the future (so then, are we all at risk of getting autism from vaccines????).


Interesting enough, Jenny McCarthy, David Kirby, and Dr. Poling will all be on Larry King Live tonight. Should be one heck of a time.

More on my take on the whole mito-autism thing here.

Thank You Dr. Gupta

I have to say I am grateful to Dr. Sanjay Gupta for NOT wearing a puzzle ribbon today.

These are the type of rainbow ribbons we prefer to wear in our household:

ANTICIPATION

I suppose Andy Warhol was right on.

My mother called me today, to say that CNN was airing short profiles of autistic people and their families. She was happy to report that most were positive stories, and they were showing autistic adults as well. So, I turned it on and saw this great story. I wonder if Jenny was tuned in to CNN today?

Anyway, at lunch this weekend, discussion turned to the "Naughty Auties" special (which I missed) and then Autism: The Musical. I've gotten quite a few phone calls and emails in the last few days, friends and family alerting me to different news specials I may want to watch.
Earlier today, my older daughter tells me about the Autism-Teletubbies commercial she saw when her sister was watching cartoons. This was comical, she relayed the ad practically verbatim. I joked, "so, are the Teletubbies coming to live with us?" My very serious eldest, unamused by my question, says, "No. But, they did give a website, www.autismspeaks or www.speaksautism or something like that." Great.

So all of this in the last couple of days, coupled with the commercials promoting World Autism Awareness Day, and the many fund raisers going on during Autism Awareness Month, I have this feeling of anticipation. All of these groups and news organizations have hyped tomorrow so much, that I am anxious and excited for it. I realize that April 3rd will be no different than today. It's not like some momentous event will occur tomorrow, changing all our lives. But still, I feel I will have a hard time sleeping tonight. My mind will surely wander--what will be aired? What messages will get across? How many times will I cringe? There's a part of me that is very hopeful. Maybe, just maybe, some really good perspectives will be shown. It's possible that good programs for children and adult autistics will be born out of the information presented tomorrow.

Thus far, the overriding theme seems to be about adult programs. I hope this carries over for tomorrow, along with financial planning (aka don't throw blow through all your money and go into debt while your kids are still in the single digits, what will you do for them in their teen and adult years??). That would be a welcome and refreshing change for autism awareness. I suppose I will watch quite a bit of TV tomorrow, my DVR is already set to record a few programs. I suppose I should hit the grocery store for some snacks just for this occasion (sarcasm).

You can visit CNN and see what they've already aired, and what is on the schedule for tomorrow. Better get your popcorn...

Hoop Dreams

If you happen to catch a story called "Hoop Dreams" on Headline News' Glenn Beck show, it is a great one. 27 autistic children get together "like any other kid in America" and play basketball. Christine Dunn (sp?), a parent of an autistic son, developed the program which is based in Staten Island. Her son looks forward to basketball, learning new skills, and best of all, making friends. His mom says he is "happy, and that's the most important thing."

Now that is cool!

The story should be up on the link shortly (it just aired as I type). I apologize if my quotes were not exact. I happened to be blogging something else, and this story came on, so I typed as I watched.