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Anne Dachel on the Rising Autism Numbers

Autism pose By Anne Dachel

Today I found a story from April, 2007 that I don't remember ever seeing before.  It was written by Kristina Chew and it was a critique of something I had written. Chew is the mother of a son with autism and she's someone who's very outspoken on the subject.
 
This is the story I found: The Autism "Problem/Crisis/Epidemic/Emergency" (HERE)
Chew focused on one of the issues I'm most outspoken about: We are not prepared for the coming population of adults with autism.
 
Chew wrote: "Centers for Disease Control and Prevention Director Dr. Julie Gerberding has referred to autism as a 'serious public health problem,' and A-CHAMP and National Autism Association (NAA) member Anne McElroy Dachel takes the title of her April 10th article Autism: A Serious Public Health Problem from Gerberding's words. Dachel is quite concerned with language in this piece, and asks why the CDC has yet to refer to autism as the 'crisis' and even a 'national health threat.' "
 
Chew included several quotes from my writing.  Her main point was that I'm wrong.  There's no need to worry about what will happen to all the kids who have an autism diagnosis.  She doesn't offer real proof of her claim.  She merely says, "And the good thing, as Dachel herself notes, is that we will notice all of these autistic persons; we will see them, unlike the situation for previous generations, whose autism was not apparent, understood, or identified: I just had a conversation with an autistic person from a 'previous wave' yesterday (she lives across the street from us). We are able to see them now because we know what autism is and are able to understand when we see it.  "And, provisioned with what we now know, I don't think we will be drowning."

Chew said the same thing that Paul Offit wrote about in Autism False Prophets. (HERE)  Offit also has no concerns about the future when all the children with autism become adults.  He dismissed the increase in autism by saying we just used to call autistic people 'quirky,' 'different,' or 'unusual.' 

Actually, I'm tired of people saying that expanding the spectrum and including high functioning and Asperger's Syndrome accounts for the explosion in the numbers.  Why do I personally know so many young people with severe autism, whose symptoms can't be ignored?  How could we have just missed these people in the past?  Where are those misdiagnosed adults with classic autism---those with the same symptoms we see in so many children today?



I'm not talking about Chew's autistic neighbor who was able to have a conversation with her, or Offit's people who are kind of 'quirky.'  I mean adults who can't talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth.  I also want to see adults like this who once talked as toddlers but who suddenly lost those skills.  Neither Offit nor Chew has ever been able to show us those autistic individuals.

Does Chew truly believe that the explosion in the numbers in Maryland can be explained away by saying that autism just wasn't "understand" and wasn't "identified"?
Maryland Jul 10, 2009 Press Release: Governor Martin O'Malley, Speaker Busch Address Maryland Autism Summit. (HERE)  'It's alarming how many more Maryland families face this troubling diagnosis each year only to discover there is so much we as a nation have left undone," said Michael E. Busch, Speaker of the Maryland House of Delegates.

'...Ten years ago, 1,600 Maryland children with autism were being served by Maryland's educational system.  Today, that number has grown to 7,500.  Yet, it remains unknown just how much of the increase is attributable to better diagnosis and how much to the prevalence of the disorder.  Currently, 2,300 students between the ages of 14 and 21 will be "aging out" of the public educational system over the next 5 years.'
 
Does Chew think that the California numbers are just people whose autism was not "apparent" 20 years ago? (HERE) California State Senate Autism Committee: "There were "14,000 students with autism a decade ago.”   Today, “46,000 students and growing."
Kristina Chew received national coverage in Oct 2008 as part of MSNBC's Today Show report on vaccines and autism featuring Nancy Snyderman yelling at Matt Lauer, "It is not controversial Matt!"  (HERE)  Chew was included saying, "I know that vaccines did not cause my son to become autistic.  He was born with autism.  He was born the way he is.  He's always been a little different.  He's not autistic because of a shot."  According to her, vaccines don't cause autism and there's been no increase in the rate.

It was almost three years ago that Kristina Chew challenged what I said about autism being an epidemic.  In the meantime, what's happening to support or disprove my position? 
 
Lots.
 
We are seeing the start of the tsunami.  It may only be a few waves at this point, but people are worried about what's happening.  They're using the word "crisis" when speaking about autism. These are some of the stories out there that should be sounding an alarm about the explosion in the autism rate and about a generation of disabled adults that no one can explain:
 
Jan 13, 2010 Autism Speaks again calls upon the federal government
(HERE) "Autism Speaks chief science officer, noted that recent research indicates that a significant amount of the increase in autism prevalence cannot be explained by better, broader or earlier diagnosis and that, 'It is imperative that the federal government, primarily through the National Institutes of Health and CDC, quickly and significantly increase funding for autism research to explore the factors that are contributing to the increase.' "
 
Baltimore Sun Dec 19, 2009, Autism found in nearly 1% of children (HERE) called autism a "public health crisis'' and said that " '750,000 children are now estimated to have an autism spectrum disorder, and those children will be growing up to be adults and will need services throughout their life span.' "
 
KING5 TV Seattle Dec 29, 2009, The World Within: Independence for adults with autism (HERE) " 'You know, we spend... the first 21 years of their lives getting our children ready to go out in the community, the reality is right now is our community is not ready for children like Alyssa,'... "
 
Canada Oct 6, 2009 New findings reinforce the urgency of autism as a major global public health crisis.  (HERE) "Autism is an urgent and growing global public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors."
 
WTVG-TV Toledo OH Nov 24, 2009, The number of adults with autism is growing (HERE)
"The numbers are staggering. ...But what happens to those children when they grow up? . . . Experts say people with autism need lifelong support. The growing number of cases means our country will eventually have to fund more services for autistic adults."    '.
 
 Pennsylvania Nov 25, 2009 The Pennsylvania Autism Census Project Final Report (HERE)
"According to the study, in 2005 there were close to 20,000 Pennsylvanians living with autism. Given trends, we expect that number to rise to at least 25,000 by 2010. 

"The report also illustrates that the number of adults with autism will increase dramatically in the near future, growing by 179% to more than 3,800 in 2010 and to more than 10,000 by 2014."

"Things just aren't getting better, and individuals with autism are growing up. Now we need to include school-aged children, teenagers and young adults in our mental snapshot. The number of autistic children expected to need extensive adult services by 2023 - more than 380,000 people - is roughly equal to the population of Minneapolis. And, the bill for autistic children entering adulthood over the next 15 years is an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period."
 
Erie, PA Jan 6, 2010 America not ready for autism onslaught (HERE) A letter to the editor from a PA pediatrician:  "...Pennsylvania will see a dramatic increase in the number of adults with autism in the near future. In 2005, we counted 1,421 adults with Autism Spectrum Disorders who were 21 years of age or older, just 7.1 percent of the total ASD population in Pennsylvania. We estimate that this number will increase by 179 percent to 3,825 in 2010 and by 621 percent to 10,140 by 2015.
 
San Diego, CA Jan 7, 2010 Autism numbers go up, autistic children grow up (HERE) "The image of autism is changing.  Autism is no longer depicted by the adorable curly haired toddler sitting quietly in the corner, stacking blocks in perfect order, while his peers engage with each other in a whirlwind of interaction and activity.  Unfortunately, now, it's time to put a few more toddlers in the corner.

"As a community, state and nation, we must deal with this tidal wave of children, adolescents and adults with autism. Our goal must be to improve the lives of people with ASDs and pursue basic research into the cause or causes of this increase."

Arizona Republic Jan 14, 2010 Children of autism approach adult world  (HERE) "The new face of autism is a young adult, trying to carve a place for himself in society.

"In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older."
 
Please notice that these stories are ones posted since Oct.  They're from all over the U.S.  They were not hard to find.  I have lots more I could add.  None of them are talking about the world Kristina Chew described.  It isn't that we finally got the name right.  As a society, we've never had to deal with people like this.  We don't have the programs or accommodations for autistic adults.  Most of all, we don't have the money.
--
Anne Dachel is Media Editor of Age of Autism.
 

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Anyone who follows the group of parents who dutifully listen to their vaccine pushing pediatricians are foolish. This bunch wants you to believe that doctors are always right and we should just take all the psycho meds handed to our kids and accept the fact autism is not caused by anything other than bad genes. It is apparent that these types have NO minds of their own and do no research. I also find it oddly coincidental that shortly after Anne wrote this the mom mentioned here is now writing that her child is only having great days at school and no behaviors. Sure. It clearly shows the phoniness put on by the ND misfits. Who in their right mind would listen to them?

To "Autismjustdoesn'thappen", very well said. If this ND movement of parents is so accepting and thrilled with their children as they are, why do they spend an unusual amount of time bashing AOA and anyone else who does believe that their son or daughter had vaccine reactions which resulted in autism?
Also how could any parent, no matter what their views on causation is, deny the massive increase in autism? Even the majority of doctors admit the increase even if they disagree on why. Anyone who denies this increase must be living in an alternate universe.

To John
I am the mother of a 14 year old with autism and I am an occupational therapist who has worked for 30 years in the school system, in special ed. My special ed. teacher, para-educator, OT and PT colleagues were saying in the 1990's, "Where are all of these children with autism and PDD coming from". This was long before the change in diagnostic criteria and before I, too, became an autism-affected parent. Now, everyone in both regular and special education asks the same question, with the push for inclusion in regular ed. and the expansion of autism classrooms in almost every elementary, middle, and high school. What is sad is the 20-something and young 30-something teachers and related service providers think that the population explotion of children with autism in the public schools is the way it has always been. Many of them accept the "caused by genetics" lie as truth, because their perspective is that this is just normal. Unfortunately, those of us who watched the dramatic rise in autism from the 80's to 90's to what is now labeled as "normal" are in the process of retiring. I wish someone would interview school system staff when they do various media reports on the rise (or better diagnosis) of autism. We could give them an earful that would be hard to refute as "these children were always among us".

I can't even imagine what will become of the kids of these PID's (Parents In Denial) in 10 years. I suppose they had better bring back institutions because that's where they will end up if these oddballs keep on with the Pollyanna attitude of "my kid is just different in a wonderful way." Sure.

Henderson, thank you for saying what I feel. I believe I have one child who is "vaccine-injured" and another who is "born-this-way" and "vaccine-injured". One child lost skills after vaccines and one had tons of medical problems after vaccines. You are dead-on target in a very poetic way.

Thank you, Ann. I wonder whether in the future there's going to be quite a population of epidemic deniers who've lost their minds completely and will need services.

I'm thinking of the mother character in the 80's film "Five Corners". John Turturro plays an excellent psycho (pre-autism epidemic, so he's just a regular old-style violent sociopath). His mother, a woman surrounded by floral wallpaper, muzak and porcelain chotchkas, has obviously been living in a detached dreamworld while her son has rotted all his life. In the end he lifts her up and demands that she face the reality of what he is once and for all-- then he throws her out a fifth floor window.

For some reason, the portrayal sums it up for me. When people don't have the truth for their minds to chew on (pun not intended), I think they lose it.

PhillyLisa, thank you for your kind words. One of the reason I am as sucessful as I am, with a job, and my own place, i sbecause how hard my mom pushed.

I didn't always like it. I would struggle with fustration trying to do all that was expected of me and fake normal at the same time. But it was because she did those things that I was able to live on my own after I graduated.

She would tell me all the time to never use my disability as a crutch. That if I couldn't do something, sit down and think about how I could find a way to accomplish it. Because the world is not going to accomodate you or pity you she told me.

Sounds harsh, but it did prepare me for life. I ame out of that home knowing how to cook, how to budget, how to clean, how to prioritize, etc. Because I was treated like the other kids and was expected to do everything they did, and no excuses would be accpeted.

It was tough, and sometimes I hated her for it. I thought she didn't understand. But she did the best thing for me she could have. She forced me to find my own way to be able to do things, to get along in the world that has such few accomodations for those like me.

She encouraged me to think about the things I was doing. Taught me how to problem solve by having me think of different ways I could approach what seemed to be an impossible task.

I usually try to advise parents to do the same. There are things about your child you can not change. They are going to meltdown, they are going to have sensory issues, and society will always be a scary place for them.

But you can teach them how to cope this way, until a time when that cure finally comes. Because of that, when I do meltdown, I trained myself to the point where I have a five minute window to find an empty room so I do not harm anyone or any object.

I hope that helps some!

How great would it be to see our children pulled from the rubble by an army of workers determined to save their lives?

http://photo.newsweek.com/2010/1/survival-and-devastation-after-haiti-earthquake.slide10.html

Instead we see this.

http://ndn1.newsweek.com/media/6/deadliest-quakes-SLAH.jpg

200,000 may be dead because poverty isn't an issue. Our children are injured and may be dying because poverty isn't an issue. By eliminating poverty by providing proper healthcare, sanitary living conditions, food, nutrition, access to clean water, and basic living accommodations there would be no need for vaccines, or at the very least no need to cover-up vaccine related injuries.

The story of Haiti's poverty.

http://www.newsweek.com/id/231179

Im sorry for using the horror in Haiti to illustrate a point, but it is the way I see it. Whether it's 200,000 people dying in an earthquake or one child freezing to death in a winter snow storm, death is death to me, one is too many and no less horrible.

I have a son who is working in research at a university. I told him if you really want to know where the answers are go on the autism blogs. Those moms have connected the dots where no scientist has. He asked me a couple a days ago if I knew anything about methylation and I just laughed. "Honey why do you think you take B12/folic acid shots and all the other supplements I give you. " He doesn't methylate like his younger brother proven by DNA testing luckily for him he was born in 1988 not 1994. Same genetics different environment. He has seen what the DAN protocol did for his brother and he is now among them. There is hope.

Darian, I hope you will continue to post here. We need to hear your perspective. My daughter is only ten years old, but already I see her struggling with many of the same things you have experienced. She is doing well, but I have no guarantee that she will completely recover. I don't ever want her to feel something is "wrong" with her, yet I have to help her navigate a world that is completely foreign to her. I don't always know when I'm expecting too much of her. There are times I think I push her too far, and other times I panic because I know I've got to work even harder to help her to be independent. It's not about me not accepting her as she is. It's about ensuring she has a future when I'm gone.

Sorry, something in my previous post got garbled - the sense should have been something like this:-

"I would be fascinated to know what the professionals were really saying to each other at the time (mid-1990s), but the current situation with young adults echoes just what we were having to endure with pre-schoolers then."

Of course, the situation is incomparably more catastrophic now, because we are dealing with adult-sized children, beyond the physical capacity of parents to cope and who only have little say in their support. And while services are often well-meaning, the knowledge and the resources are absent.

For this situation I blame very much all those parents who have publicly played the game of deference in the years when things should have been said and something could have been done.


It is interesting to recall that much of our early friction with health professionals was through their insistence that our son hadn't really regressed - it was just our perception. We doubted at the time - based on the text book accounts - whether he could be autistic because of the progressive loss of faculties and were very puzzled by both their confidence that he was autistic and their blatant denial of regression. The early row was not about vaccines (the adverse effects of which we had already been indoctrinated to ignore) but just about their utter failure to explain what was happening, while leaving us without useful services (which in turn was partly due to the unprecedent influx of new cases at the time and partly to really not knowing what to do anyway).

I would be fascinated to know what the professionals were really saying to each other at the time (mid-1990s), but the current situation with young adults echoes just that we here having then. Adult services have not the slightest basic training for what is beginning to happen, amid absurd and confusing claims from the official bodies that it is all really quite normal. This is making our lives very hard.

I am delighted if Kristina Chew feels that she has been adequately supported and has confidence for the future, but as for speaking for the rest of us and our children, she and her friends are doing untold mischief.

bensmyson,
It isn't just you.

Becky wrote, "I care what Kristina Chew thinks," which reminded me of a bumper sticker:

"If you haven't changed your mind about something, are you sure you have one."

Yes, I would be interested in Kristina Chew's informed perspective. We have almost 3 more years of data and studies.

Thank you for your kind words Benedetta. It makes me feel good, to get a reply. :) I have been known to get on my soap box about the issues facing us high fuctioning adults.I argue into I go blue with people trying to explain that just because I can fake normal with the best of them, I still have many serious issues.

THough not nearly as many as others I know with AS. We are talking about highly intelligent individuals that yet could not take care of themselves if they lost thier family tomorrow. They don't have bank accounts, never had a job, never went grocery shopping for themselves or for thier mom.

No one is there to see our struggle. Society thinks that we should be intelligent enough to handle ourselves, and if we don't we are looking for a hand out, or that our parents are. Which is b.s! We have sensory issues, meltdowns, severe social problems, communication difficulties.

Yes I can talk to someone, doesn't mean I understand the conversation going on, or being able to tell when someone is being sarcastic or not. We are so litteral that for example as children, if someone tells us they have a frog in thier throat, we would go looking for a doctor to remove the frog!

There is nothing for us in supports after school either. There is no support there to help us learn how to be on our own. How to read social situactions, how to get along in society so that we will actually leave from our front door.

We get ignored, insulted, called pampered brats or just plain lazy, when no one is there when our parents watch us struggle each day just to be a part of the world. They don't know how hard it is, how much effort it takes for us to get through each day.

And I appreciate people like you Benedetta, who recongnize our struggle, and fight for the rights that were stolen from us as infants. I say we find the pediatircians who shot up said kids, and shoot them up with the same vaccine, with mercury that they use to have included, (there use to be more I have been told when I was an infant).

Then I want to watch how they react. Call me an overeactor. I would find that if they had adverse reactions to those vaccines, it would be poetic justice. Experience what we go through each day because of you you damn drug dealers! And that is what they are any more. They are no better than the drug dealer out on the street trying to sell you the latest drug craze.

And the drugs the doctors offer you aren't really any better for you than the street drugs, or so I have found for me.

Can you imagine if our kids' plight got even a fraction of the media attention and MONEY that has gone into the Swine Flu farce?

The fact they they even want to deny the fact that our kids even EXIST says it all.

They have damaged our kids through irresponsible Public Health mandates, then turned around and let them down and kept them down at every possible opportunity. Now they want to pretend it is business as usual and this is the way life has always been? That is just so sick and twisted. I know the public is pretty gullable, but this is ridiculous!

As Adolf Hitler used to say:
"What good fortune for governments that the people do not think"

I bet he is giving a double thumbs up from hell right now.

Kudos to all the parents who love their children unconditionally, support them, care for them, make personal sacrifices, and share knowledge.

What I find troubling are writings by some parents, particularly those in academia, who intellectualize, overthink and narcisstically fetishize their every thought and deed regarding autism, wrapping even the most grim realities tightly in self-absorbed denialist rhetoric.

Reality is insistent, and eventually pushes its way through the insulation.

Excuse me Becky but the ND crew are the most arrogant people going. Have you had the chance to read the blogs of immature people such as Kev Litch, Liz Ditz (now there's a complete misfit), K. Wombles and others? Don't come here and tell people they shouldn't express their opinion about those who seem to thrive on bad mouthing parents who are simply trying to help their kids.

Excellent points made about regression. I had my son over 20 years ago. No one said anything to me about watching for the signs of autism. I had never seen or heard of a child who'd ever regressed. No doctor ever advised me to pay attention if my son suddenly stopped talking, started spinning in circles, rocking back and forth and no one could tell me why he started doing these things.

The brilliant doctors now regularly looking for signs of autism at well baby checks aren't suddenly recognizing behavior they used to ignore....KIDS WERE NEVER LIKE THIS BEFORE.

The AAP can stop taking credit for this disaster any time.
Anne Dachel
Media

Well, Henderson gets my vote for comment of the year so far. Dead on. Think how many of us that autism has turned into active writers. We blog, we comment, we tell our story. Even people like me that never before shared an emotion in public.

So, this thought that for century after century children disappeared in the same way ours did but yet nobody bothered to mention it or nobody bothered to incorporate it into a single fairy tale is quite absurd.

Deb - The dual diagnosis of ASD/Down's is actually pretty common (within Down's). If I remember correctly, from a presentation I saw once, they can be quite severely impaired. Here's a stat (7% of Down's have ASD):
http://autism.suite101.com/article.cfm/autism_and_down_syndrome

Where are these regressed toddlers in history?

Where in our sacred texts of every ancient written religion of the world? Where in our sacred oral traditions of the many religions from anywhere on earth?

Where in our western written tradition that we are so familiar with from our English Lit class? Where are these toddlers in Beowolf, Chaucer or Shakespeare?

Where are these toddlers in "The Epic of Gilgamesh" (or any other ancient text for that matter)?
http://www.ancienttexts.org/library/mesopotamian/gilgamesh/

Where in our nursery rhymes?

Where are they? And, more tellingly, where are their mothers?

Given that all of "our" cultures where generally paternalistic and pretty anti-female (yes, that is a sweeping generalization of every culture on earth - go with me). Given this assumption... one can only imagine what all of these texts would have done EXACTLY what that man, Dr. Kanner did. Blame the mother or some other female. For that man from hell it was the "Refrigerator Mother".
http://en.wikipedia.org/wiki/Refrigerator_mother
For many traditions on earth, god forbid, it would have been even worse (e.g., the burning of witches).

I cannot believe that screaming/weeping mothers holding their child in their arms, wailing into the night... I cannot believe they have always been with us... If they were, they'd be in OUR stories.

Where is the RETRIBUTION for this sin - the theft of a personality, the theft of skills, the theft of a child?

Where are the "evil" women who are punished for this sin?

Where are the "evil" women being flagged, stoned, burned for "stealing" someone else's child's personality through witchcraft/spells/trickery?

Where are the "evil" women who "deserved" to have her child's gifts taken from her by a vengeful god for her evil and wanton ways, for her blasphemy, for her adultery, for her sins?

Regressive autism: their laughter, their joy in learning, their personalities, their gifts stolen from their wailing and weeping mothers have NOT always been with us!

THIS IS MY PROOF!

I am one of the weeping and wailing mothers. I screamed into the night. I wept tears unlike tears that never experienced before. I wept for weeks on end. I screamed at the top of my lungs, ravaging my throat - in my automobile - where no one could hear me. I wept from the bottom of my heart, from the bottom of my soul, I wept the blackest tears.

My child is both: "born this way" and "vaccine injured" - I could go on and on about the signs when he was an infant, but it doesn't negate the fact that he was vaccine injured as well. It is horrifying to have your belief system shattered (that the government is looking out for everyone - even the One-in-a-whatever). To understand that you too have joined a sisterhood of mothers screaming that their child was vaccine injured. Screaming that the child that was there is suddenly gone.

For us, the toxic cloud we live in (for GENERATIONS), the pesticides, the antibiotics & pollution for MY mother, MY grandmother, my childhood of antibiotics and whatever toxic cloud I went through, my industrial city where I gestated the love of my life - these all loaded the gun, the genetics pulled the trigger that led him into ASD (and not Type One Diabetes, allergies, asthma, you name it). The bomb that blew him to pieces was a vaccination.

I believe EVERYONE'S story, from the "born this way", to the "both", to the "solely vaccine injured".

But I go back to...

Our story did not exist before we entered our post-industrial, toxic modern world. My regressive toddler did not exist. I did not exist.

I care what Kristina Chew thinks.

What I find arrogant and appalling are those in the comments who resort to [bordering on petty] personal attacks in an attempt to get one's point across.

Im getting the feeling that Im pounding a square peg in a round hole, I look in the mirror and ask, "Is it just me?"

Put my son in a wheelchair, wrap a bandage around his head, and pin a pink ribbon to his shirt ya think someone might want to do something about him? Is it just me? Christ how much time have I got left? I'm beginning to panic and Ive only been in this 2 and a half years, is it just me? Where is the frickin support for healing him, getting him to a place where he can be independent? Bend in the grass? Bend? Do we all koombahya and turn a blind eye to the 200,000 in Haiti that lay dead under a pile of rubble because it was a Pat Robertson gift from God? Let's just bend right? I mean seriously, is it just me? Bend, as in bend over and take it? Oh hell no, fight, hit, slap the dog piss out of autism, and send it packing. A brain injury caused by a government backed vaccine program stole my son away from me and my wife on April 18, 2007, lucky I guess it didn't kill him so I guess Im supposed to accept it, to bend, oh 200,000 dead in Haiti what can you do right? Here's five bucks, here's a blanket, oh how about some water?

Like we had no idea poverty and corrupt governments could cause such devastation. Like shanty towns with 100,000 residents living like animals is Ok, let's just bend with it huh? Like the American boycott of Haiti after the revolution from France, helping to keep a mighty thumb down on a onetime prosperous nation. Oh what a surprise! Is it just me?

As if 1 in 150 didnt turn into 1 in 100 wont turn into 1 in 50, as if there is no problem just bend over. As if Im insane for pounding this square peg day in and day out trying to make my son fit, as if they didnt see this coming, as if they aren't the cause. Is it just me god-damn it? Is 200,000 dead not enough blood, they got to take my son as well? Not while Im alive. Get me a boat, hell Im swimming to Haiti, I want to, god knows I do, I want to see someone's child saved by anyone other than their parents. I want to see with my own eyes a WORLD that comes together to save the innocent. Is it just me? Is it?

Pittsburgh Channel 4 TV is doing a series on autism this week and while we get the same old debate over a link between autism and vaccines, they are talking about the cost of autism and they stress that the rise in the numbers is real.
http://www.thepittsburghchannel.com/allegheny/22274713/detail.html

"The government estimates the lifetime cost of care for people with autism is $3.2 million [each]."

"Adult services can be hard to find, but that needs to change, since 54 percent of the cases of autism are elementary school children. In the next few years there is going to be a tidal wave of individuals needing adult services."

That "tidal wave" will be the undeniable proof of the disaster that has overwhelmed a generation of children.

Anne Dachel
Media

Ms. Chew and I were in an anthology together - I wrote about how and why I fight for my kids. She wrote about being a blade of grass and bending to the wind of autism and spoke at an event I attended about how her son taught HER to get over her fear of swimming.

We are about helping our kids - they are about making themselves feel better. I've no time to dabble in their world.

Darian is correct!!

Those stricken with milder forms of austism do have other problems. Tourettes, obsessive-compulsive disorders, aniexty, epilepsy.

Is not one of of four aspergers stricken with epiliepsy??

My son has all those as well as a flat, monotone - yet he can pass as normal - I don't know if anyone outside the family that don't see his meltdowns like we do know there is a problem.

We have been trying to get SSI for four years. We are not in any hurry, but there will be coming a time when our backs are going to be againest the wall. He might could - can work but he is going to need a great deal - a lot of help either from the government or from us.

And since the government had a hand in creating my son, and we have no justice so far- plus they keep the same policies to create more like my son -- I plan on going to great lengths to get them to pay.

I know it is the tax payer that is paying and it really is not even any skin off (the government and all the people that work for them) 's nose, but I don't know what else to do other than something outside the law.

I saw Kristina Chew post comments and thought she would be engaging in a dialogue about the subject of Anne's article. Instead I find she only promoted her and her husband's websites. LOL

Another comment from Kristina Chew: My husband, James T. Fisher, has also begun writing about autism and Charlie on his blog, The Irish Waterfront.

http://irishwaterfront.wordpress.com/


Thanks again to Anne Dachel and AOA for writing about this AutismVox post from 2007.

Sincerely,
Kristina Chew
http://autism.typepad.com
http://www.care2.com/causes/author/autismvox/

A bit off topic but could there a be a connection between high autism rates and abnormal purine and pyrimdine metabolism??

This is a very common genetic defect that has been linked to autistic behaviors from mild to severe.

According to the The Purine Research Society:

"one out of every 100 live births, a defective enzyme gene occurs, resulting in a partially or completely non-functioning enzyme. Then, like traffic backed up behind a washed-out bridge, the molecule normally converted by that enzyme (the substrate) builds up; the molecule normally produced by that enzyme (the product) becomes scarce. Two important consequences result:

the accumulated substrate may be toxic to us; or the deficiency of the product may handicap our ability to survive and function."

Symptoms of High (urine) uric acid levels: speech delay, toe walking,hand-flapping, increased auditory sensitivity, self-injurious behavior, and decreased sensitivity to pain, seizures.

Symptoms of low (urine) Uric acid levels: developmental delay, seizures, impaired fine motor control, distractibility, hyperactivity, abnormal social interaction, speech deficit, immune deficiency, and frequent infections.

A simple urine test can be done to measure the uric acid levels:

More info:

Purine Research Society- relationship to autism:

http://www.purineresearchsociety.org/index.html

Abnormal Purine and Pyrimidine metabolism - autism

http://autismspeaksnetwork.ning.com/forum/topics/abnormal-purine-and-pyrimidine

Greetings from Kristina Chew and thanks to Anne Dachel for writing about my post.

You can read more about Charlie at We Go With Him:
http://autism.typepad.com

and from me, occasionally, at Care2.com

http://www.care2.com/causes/author/autismvox/


It seems my state, Missouri, has the highest rate of autism in the country. I did not know that till I just looked it up. But however I do not see a rsie in Kanner's classic atusim in the state. I do see a rise in moderate autism. Not high fuctioning but not low either. These would be those who can communicate, though whether thwy want to or not is a different story depending on the situaction, lol!

They have hyper issues with sensory, and tend to stim more than someone with AS (though we do have them, just not as noticable). many that I know of through work usually work at thier community's sheltered workshop. (I don't agree with the whole sub-minamum wage thing workshops do but that is a topic for another time.)

Moderates can control themselves to a point. Though if they get anxious or upset, they do go back to the head banging, or I've seen someone dig thier nails into thier skin and draw blood.

Still a major issue is what I'm trying to say, though not as severe. Thorugh my work with my Division, alot of times I will see Moderate Autism paired with someting else. Usually Mild MR, things of that nature.

Another interesting trend I have been noticing lately is the rise of those on the spectrumm being dual diagnosers.

Time to get back on topic. I see a rise in these cases, though usually in the moderate area, the numbers nation wide for the other end of the spectrum far surpass moderate and AS. Asperger's being diagnosed and noticed for the first time can not account for such large numbers! That is ridicoulous! Even when ADD was the trend diagnoses durring the early 90's the numbers didn't jump that high for ADD!

There is something going on here. And better diagnoses does not cover it, I am sorry. It may explain a small rise, but not such an epic and dramtic rise in numbers in so short a time period! There are simply to many people!

Come on my fellow aspies, you can't look at those numbers and say that just more of our kind are being found. The numbers are just to large for that!


It is frightening that some parents are in denial about the dramatic increase in autism. I think reality will hit when their children are 21 years old, no longer have services and are so large and/or drugged up that parents will be at a complete loss. It amazes me to see the number of parents who write blogs that portray destructive behaviors and severe deficits as "cute and funny" or make endless excuses for not addressing behaviors properly. These ignorant autism parents need to wake up. This won't be fun when the children are no longer little and adorable.

The most compelling information I've seen on the explosion of autism cases is in this report from California:

http://www.dds.ca.gov/Autism/docs/AutismReport_2007.pdf

The statistics in this report show that not only is autism increasing at a staggering rate, the increase is almost entirely from full-blown autism, not milder ASD's.

I have read many of Kristina's blog entries about her son Charlie. He sounds like a handful with a lot of challenges and issues. Their life sounds pretty difficult. Does she think he is a rare case of severe autism? Does she have any clue whatsoever about how many kids are like her son? I know I don't. Does anyone know the answer to how many cases are mild, moderate or severe?

And because she thinks her son was born as the way he is- than no one else's children changed and became autistic coincidentally after a set of vaccines? I don't care if she thinks Charlie was born as he is today- I have no right to tell her differently. But, she doesn't have the right to tell us who saw our children change and become autistic and ill- that they too were born that way.

Autism is a serious health crisis facing so many individuals- who are growing up rapidly. Kristina's son is a very big boy who is now towering over his mom, and wearing shoes bigger than his dad at only age 12. What's life going to be like with Charlie at 16 or 18? What will he be like? Does her son's future scare Kristina like it does so many of us for our children?

One of my biggest concerns is that we are drugging our kids with heavy duty anti-psychotic meds (Kristina openly writes about the medications Charlie takes)- How are those kinds of drugs affecting these kid's dysfunctional brains. This is the brand new experiment on our kids. Outcomes yet to be known.

I think the Trudy Steurnagel case really struck a chord with Kristina because she wrote about the parallels in thier lives- she even titles it " It's Just Too close"

Here's the link:

http://autism.change.org/blog/view/its_just_too_close

Does she think Trudy was/is the only parent living as she did? Raising a young autistic adult male taking a bunch of psych meds with huge communication and behavior issues. Yes, Kristina has a husband who is actively involved in caring for Charlie and that I'm sure is helpful. But, she must realize there are many "Sky Walkers" out there growing up with intense behavioral issues,intense communications difficulties and taking lots of meds like her Charlie. What will the future bring with no supports in place, no money, basically no help to families.

Autism was rare 20 years ago. People who deny that are the true denialists. Something is going horrifically wrong with our children. We have good reason to believe a good portion of these cases are brought on by aggressive vaccination. Too many parents anecdotally report this is the case.

Kristina please stop denying this. Even if you don't believe this to be the situation with your own child- don't tell us therefore it didn't happen to ours.

Kristina, please realize we have this crisis staring us in the face.

Please Kristina wake up.

I have been on my soapbox for 7 years now alerting people to this issue. Right now, we are on the brink of a crisis with our adult population. The 1-150 '94 kids are graduating this year! And there is nothing out there to support them! It's pretty much once you graduate, you drop off the map!

At least if you are higher fuctioning. Right now there are many of my fellows on the higher end of the Spectrum who fall into a catch 22 situaction. THey have high IQ's, and are artiquilette, so they can't go through the state Department of Mental Health to recieve services.

What the people don't see in these so called high fuctioning people is this fact. That most of them, as smart as they are (I include myself at one time), if they were to loose all thier family tomorrow, they would not be able to survive on thier own!

These are in general (I am not discriminating, I'm using data) kids who never held jobs before, never had a checking account, only did basic chores as kids. Many are sacred to go to the grocery stores, going out into public places to get the essentials to get along. This is not all of us, but it is a reality for many, and it shouldn't be dismissed because it sucks.

There are no supports out there for these kids to turn to to learn how to become independent. There is no one there to teach them how to cook, how to clean, how to budget, how to balance a check book, keep track of money. No supports to help them be able to get comfortable with going out in public to get things done that need to be done.

There is no housing for the higher fuctioning. No transitions like program where they can have thier own apartment, with apartments around them being filled with others like them, where staff could be there to watch them and teach them while they live there how to be on there own.

What will happen to these kids is they will be kept behind closed doors. They will be there in teh house of thier parents day after day. No one trying to help them. And when the parent dies, they will be put into a home, and all that person ever needed was just a little bit of help.

Imagine 1-150 being behind those closed doors. That is alot of people who will be collecting on disability folks! And not because they want to. But because there were no supports EVER put in place to teach them how to be on thier own. There is no support afterwards from support staff if need be.

Some of these guys are the smartest individuals you will ever come across! They know thier subject of interest inside and out. There is so much potential there going to waste, and nothing is being done about it!!

Wake up folks! The numbers are real, and we need real supports, right now!! Because as the numbers begin to rise and more and more begin to graduate, without supports, not only do they get locked up and left behind, but the tax payers pay for it, and it costs alot more to pay to take care of someone then it does to pay a small amount to help them learn how to earn on thier own.

People like me can go as far as I have. Though I do want a cure, and shan't ever stop fighting for one, I don't turn away from the progress I have made. And that is all pretty much do to a mother who told me to never use my disability as a crutch, and treated me the exact same as the other kids. We were taught how to cook, how to clean, etc. And it was taught in a way I understood, with detailed instruction and demonstration.

I'm rambeling. But people got to realize there is a crissi on our hands. If we do not start thinking about these supports now and start supporting these adults through programs that teach them these things, we will be paying for said adults later, and with those numbers....

Hear me politicans. Spend a little to earn alot! We can become tax paying citizens, and we do vote (on my end of the ASD, I have to add that), and imagine the buying power we could kick back into the economy if we could get support enough to be able to later embark on a career!

*Darian's rant is over*

Agreed, but the problem I have is that the "diagnosis" is being expanded. I just read an article about a child diagnosed with Down's Syndrome and Autism. It just doesn't make sense.

I wish Kristina Chew was right, but she's not. And people like her will learn the hard way. There will be no where for Charlie to go when he's an adult and she is dead. I hope she is stocking away a lot of money (like millions) into a special needs trust for him. Because when our young kids hit adulthood, there will be no services, no housing, no disability benefits. It's already happening, the govt has chipped away at these benefits whether it be education or medicaid reimbursement, medicaid waiver programs, group homes- all kinds of funds cut. There just isn't the money.
These kind of denialist statements from the Offits and Chews are far more dangerous than us skipping the shots.

I can't even walk into my local Whole Foods on a given trip and not see at least one other child flapping, jumping up and down, repeating a phrase over and over about a logo he or she sees on a food item, very obvious behaviors.

Some of us are even requesting the store invest in some shopping carts with an actual seat on the front because our children are too big to ride in the toddler seat, yet they can't walk next to us because they run off. Seems to me if this were always an issue for so much of the population parents and stores would have been considering such community adaptations 30 years ago, no?

In just the past two days I have had several conversations on this topic. One with my family about my wishes and financial supports for my son should my husband and I die much sooner than the 80 years we will need to stay alive caring for our now 7 yr. old nonverbal autistic son. And secondly, with a retired special ed. teacher who was horrified when I mentioned the state "list" for additional respite and such services was over 10 yrs long!

Possibly the public is in denial about severe autistic children because they aren't out and about in the community (duh!). We are extremely fortunate in that my son is mild mannered, though cognitively severe, so we go about our business as usual with him tagging along. A high pitched vocal stim, or a blank stare for an answer to the grocery clerk's questions might give up our jig, but otherwise we can pass a very brief encounter without too much attention on us. Anything longer, I am usually quick to offer up his vaccine induced regressive Autism diagnosis ;).

I don't know what the future holds.. six years ago when I dove into his diagnosis at the ripe ole age of 20 months, I thought we would be further along than we are now. I try not to speculate too much what the next year will look like (another nonverbal birthday is a milestone I would rather not endure, so I took "nonverbal"
and "birthday" and try to never associate the two in the same thought process!).
I was joking with someone not too long ago that there will be so many Autistic adults in twenty years, most businesses will be using PECS (OK fast food already is!).

But seriously, humor gets me by as the real Tsunami is just all too consuming and frightening. I am so sick of defending Autism, the cause, the lack of services, the big picture.. is there not one aspect of this friggin' diagnosis that the Government CAN acknowledge about what we are dealing with on a daily basis????

Oh, Anne,
You are so the voice of all of us on AOA. I only wish the rest of the world would listen
And I just read that all our area schools are doing the second H1N1 shot the beginning of Febraary. Is there no sanity in this world?
Maurine

Already in our state (Georgia), we've been on the "most in need" "short list" for the medicaid waiver since early Sept. 2008.

Our governor denied medicaid reimbursement for physician ordered therapies (OT, PT, Speech)for children with chronic disabilites in Nov. 2006.

He recently ordered more furlough days for our teachers after announcing that teacher pay will now be based on students' grades rather than the teacher's level of higher education. On one hand I can understand this, but on another, I see a problem. How can teachers be successful with so many neurotoxin damaged children? The steady increase in ASD and ADD/ADHD diagnoses over the past two decades is wreaking havoc in our households and our schools.

What in the hell are the TPTB waiting for?

Chew, like others, needs to Shut Up and get out of the way.

who cares what christina chew thinks? she thinks she is smarter than the rest of us b/c she has a phd. she loves to hear herself pontificate. she is irrelevant and the stats are proving by the day how wrong she is. The arrogance of these people is appalling.

Hi Anne,

Or as the present NIH director told a senate committee in 2006:

"But genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur."

http://www.genome.gov/18016846

It also brings to mind my first encounter with Kev Leitch when he disappeared into the night after I pointed out to him that he was citing projected adult cases of autism in a Scottish report as evidence of actual cases (I write here as 'Pluralist'):

http://www.guardian.co.uk/commentisfree/2006/apr/24/thesadnessofmmr?showallcomments=true#CommentKey:b7ebea7c-3adb-4c1f-b961-f898c60e02b2

Oh dear, why are these people so silly?

John


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