Virginia Denies Insurance Coverage to Autistic Children
Corporate Funding of Scientific Studies: Not for Tobacco, Not at PLoS

The Autism Speaks Baby Sibs Research Consortium, aka Everything that is Wrong with Autism Research

Autism speaks backward By Katie Wright

I recently came across a press release from the Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) about their recent meeting to examine autistic regression (HERE). Naturally, I think this is great; this issue has been ignored for so long. How terrific that a mainstream research body delves into this subject!

For anyone who does not know, my son Christian had a horrific regression at the age of 2. The mainstream medical and autism community could offer no help or insight whatsoever in 2004. The suffering is these medically complex kids is intense, the interventions few and the research on them practically non-existent. If it were not for the help I found from DAN! Practioners my son would still be living in pain.

So I eagerly read the official synopsis of this BSRC meeting. My enthusiasm quickly cooled. It felt like 2004 all over again.

I have researched regression’s causes and treatments almost everyday since my son became sick. I hate it. I received two Masters in Counseling Psychology. I hated all the stats and research methods courses. I thought: “I am going to work with people, I will never need to know this stuff again!” Well now the joke is on me. It turns out I no longer work clinically at all, but devote all my efforts to research. Almost every Mom with a child like mine does the same. We are pretty much in this alone and it is up to us to figure out why our kids regressed, became ill and how to heal them.

BSRC’s recommendations for regression related research includes: eye-gazing coding, on line diaries, eye tracking and EEGs. It could hardly be worse. First of all it is well known, well documented that when children are regressing their eye contact becomes poor. Autism research has been there (invested millions in this already), done that, researched that, reported on that- time to move on. EEGs always sound good but they reveal useful information about 1% of the time. Putting a toddler through the nightmarish processes of a 24-hour EEG needs to yield better results. So few neurologists understand how to look for the very subtle spikes and merely tell parents, “Everything is fine.” Christian had terrible absence seizures. It was actually obvious. He had 4 EEGs. Finally someone found the subtle spikes but guess what there is almost nothing you can do about it anyways. Back to square one.

After that I am thinking, “Where is the proposed research on sibs developing GI disease, night sweats/ night terrors, severe eczema, adverse vaccine reactions…issues all closely associated with regressive autism?” More than any other form of autism, regressive autism is a total body disease: kids have brain inflammation, immune dysfunction and develop colitis like GI disease. Tracking eye-gazing could not possibly be a lower a lower priority. Ask any family.



Does BSRC understand kids like mine at all? Why aren’t there parents of regressive kids on this committee? In the past I have pushed for more parent representation on this body as well as others. Now I see they have appointed Alison Singer to the board. I don’t know if Singer even believes regression exists or how many families she represents.  Where is the diversity? Why would the BSBR staff attempt to study something they know clearly little about yet refuse to include parent experts like Wendy Fournier, Jane Johnson, Lyn Redwood? Yes, yes I know some BSRC researchers have studied regression the past and for that I am very grateful. BSRC documented the true existence of regression in 2004. Since then these researchers say, yes regression exists but we have no idea why. Where is the urgency to figure this out?

Why is the BSRC populated mostly by psychologists? When will we finally get past this ridiculous idea that autism is a psychiatric disorder? Where are the parents and the clinicians, the biomedical experts on this committee? Imagine a breast cancer research consortium staffed entirely by men? Not likely, right.

Yes, many of the researchers have done a wonderful job studying the importance of early intervention. That is great. We get it and we appreciate it. E.I is wonderful but the intervention services reality is still dire. ASD kids wait months and months for services. There are waiting lists for waiting lists for ABA teachers. Inclusion nursery schools are almost impossible to find. Like so many parents I had to drive over an hour away each way to therapists and pay out of pocket for the majority of my son’s services. Too many parents are killing themselves doing everything possible and not enough kids are making significant progress. Serving kids living now with autism should be a research priority. BSRC needs to invest far more energy and resources into interventions for children living with autism today.

I started googling the committee’s principal investigators. This search leads me right to autism research’s deepest darkest ice age. Dr. Joseph Piven, BSRC committee member, recently gave a speech to families and professionals. Piven dug out an ancient quote to share with the audience: “autism Dads are aloof, rigid, hypersensitive…they are obsessive, detached and humorless…they are not original thinkers.” And we are paying for this guy’s opinion? Is Piven 100 yrs old? Did I mention Piven has a 9 MILLION dollar NIH grant to study, wait for it… brain imaging? Naturally, there are a half dozen professional eye-gazers from Yale on BSRC, as well as Cathy (queen of the stone age) Lord. Lord recently expressed her dislike of the IACC plan stating that there was undue emphasis on environmental factors! Right on, another ice age academic with her finger (not) on the pulse of the autism community.

How ironic that as all autism orgs are working hard to obtain stakeholder seats on IACC, BSRC is still a closed shop to families. There is just way too much insularity on this committee. These scientists are all pals, known each other a long time, pretty much hold the same belief systems and don’t have a child with autism.  Not one parent of a child with actual regressive autism was allowed to be part of their deliberations. Insane.

Check out the authors of some of this team’s articles on PubMed. It reminds me of the producers’ credits on “Entourage.” There are like 20 authors on most of their publications. They are largely the same scientists serving on BSRC.

BSRC’s goals for last year included more head measurement data gathering (God spare me now!) When will be move on from this one? Brain inflammation causes the overgrowth of myelin. Let’s move on to what is triggering the inflammation! Another goal is to “make progress on treatment” what the heck does that actually mean? And finally BSRC wants more data banking. Good grief not more data banking! Where is the community input? Where are the concrete goals? Where is the accountability? Where is there any outside critiquing of this committee’s progress?

Finally in the report’s acknowledgements this group excessively thanks EACH OTHER for all their hard work. It gets to a point when academics who work together for a long time, isolated from community input really, truly start to believe they are working for each other. They thank each other, they thank the NIH, they thank the grad students, but you know who they didn’t thank- autism families and kids? I am sure it never occurred to them.

Katie Wright is a Contributing Editor for Age of Autism.



Comments

Julie Penny

Sara, Wow your experience at UNC says everything. Thanks for sharing.

Bob

You nailed it on so many levels.
It's like "1 B.C." with these people.
I especially loved this funny line:
---This group excessively thanks EACH OTHER for all their hard work.---
'Sez it all!!!

They are undoubted well-intentioned, but at the end of the day they're all just *nest-feathering*. It's all about maintaining their grants to research the same things, over and over.

The truth is, they don't want the focus to shift to environmental factors, because that is not where they are credentialed. The research dollars would necessarily go to OTHER researchers. So it is not in their financial interests to research the real causes; it is in their interests to take some more measurements of eye movements and cranium circumferences.

Great column!

-Bob
(4yo son w/ idiopathic autism - started off neurotypical, then regressed @18mos)

Sara

OMG - I can't believe the quote that Dr. Priven shared. I enrolled my youngest son in the sibling study at UNC about a year ago. After hearing that, I feel like taking a shower. Maybe that explains some of the bizarre questions we were asked during the required hour long interview sessions. Questions like "Do you or your husband believe in ghosts or the supernatural?" "Do you or your husband believe in the existence of aliens or UFOs" "Do you or your husband believe to have experienced an alien abduction?"

We've been through 2 MRIs and several eye tracking tests with my son. Fortunately, he does not have autism. Interestingly, I have never been asked about my children's vaccine history . My oldest son with autism (having had the full schedule) and my younger 2 sons having had none. These "high risk" siblings would be an OPTIMAL group for studying vaccinated versus unvaccinated.

Nicole MS

I agree with so much Katie said; gave some really eye opening info about why AS should not be taken at face value.
That said, when mentioning a teaching modality, she only mentions ABA. That is something that has not changed since 2004...it took me until Apr. '06 to find Son-Rise Program (our family's God send) after nightmarish years w/ ABA.
Also, I totally agree that parents of regressed children should have a voice in how things are done. I noticed her use of the word "diversity" & found myself thinking about it in a different context...thinking about the neurodiversity folks {many of whom are adults w/ ASD}. They don't appreciate being portrayed as tragedies (& who would like that?)...which makes me wonder if Katie could maintain her passion for investigating/reporting the truth, without painting ASD folks as tragic?
I recall in those early years when my loving, expressive husband & I felt quite tragic..now, I would like to see more consideration of the feelings of those who have ASD.

Jeanne

Clap...Clap...Clap...clap..clap..clap,clap, clap, clap.. STANDING OVATION!!!!! Thank you Katie for all you do!!!

Julie Penny

Thank you Katie for being on the frontline and researching the composition of Autism Speaks’ BSRC and alerting us as to their mindset. Only by shining your spotlight on them can that information ripple outwards for us to act on...and, it does ripple outwards.

Autism Speaks gulls people into contributing to them. People make the erroneous assumption that the organization is funding research on solutions—treatments—for their kids immuno and gastro sufferings when, in fact, Autism Speaks is prolonging their sufferings by spending those donations elsewhere—on avenues of research that bring our kids (grandkids) no relief whatsoever. People are wising up.

Barry S.

Katie,
Keep it up! You are inspiring and full of class. I can always count on these stories to keep me motivated to continue the fight and lose the word "Autism" alltogether! It is despicable and is the "out" for all of the psychos (oops, psychologists) to ignore the 800lb gorilla in the room.
Jacey, love the acronym and that is an organization I would FIGHT FOR!

Barry

n

Lets not forget most parents are negelecting their own health issues to help their children. Then we ask the question am I in physical pain or is it emotional pain that you are suffering. So you go futher underground. (that's the answer for what they can't find wrong with you--you're just nuts--sort of like my daughter's regression at a young age--just a worried mom)Think I was worried then wait until your child reaches teen years. Even if your child does recover you still have a lot to worry about. THese kids are in train wrecks to be compared too. You'llnever be the same. But I do say "a better quality of life is better than the hell they'll live out as adults. Never give up. Hopefully the research will continue. I do thank all of you who contiuously treat your children. We'll have the chance to learn something out of everyone. God bless you.

Jim Thompson

“Finally in the report’s acknowledgements this group excessively thanks EACH OTHER for all their hard work.”

Katie. Thank you for the excellent report on the inept priorities of this outfit. Instead of peers giving each other recognition for significant scientific progress it appears that the priority is to give each other recognition for their success in obtaining financial support.

Autism Grandma

Katie, I just love reading your articles, and your straight and to the point review of the facts. I also love how you don't mess around with being "tactful" when it comes to people like all these idiots doing so called "research". It's midnight as I write this so I have less tactfulness as the day wears on...too exhausted to be conservative as to how I express my thoughts and feelings, and too disgusted with our corrupted medical system to be "polite".

Since researching alternative medicine for the last 15 years due to my own chemical poisoning, I thought that nothing I read about the medical system would ever shock me anymore until I started researching autism 2 1/2 years ago when my grandson was pushed off the cliff after his last batch of vaccines. I was in shock for the first 6 months but now I am just angry, "Busted and Disgusted".

Here is how I see the Bigger Picture. "Research" is just another scheme in the entire medical scam. Just like Cancer research, the goal is NOT to find any real solutions in the world of natural medicine, but the funding is handed out to the people who are researching in line with pharmaceutical interests. The researchers are not as ignorant of the realities of autism as it appears by their statements and behavior. They are simply chosing to go along with the medical agenda in order to prosper their careers and financial interests. They are not about to "rock the boat" for the sake of our children. And the horrific reality is that billions of research dollars are wasted because the Big Pharma Autism Agenda revolves around covering up the CAUSE. They research anything and everything EXCEPT vaccines for obvious reasons.

As long as this country remains in the stranglehold of Big Pharma, not much will ever improve for autistic children or any other children for that matter. Regardless of what anybody thinks of Obama, at least if we had low cost health insurance that would cover everybody for everything regardless, that would help our children, and everyone else who can't get any health insurance coverage. Things may start changing if the government is paying out on health care costs because then they would have a motivation based on reducing expenses for autism, and the reality of prevention would enter into the picture.

I was just reading today about the Pentagon researching and utilizing alternative medicine for brain injured military personnel because these therapies are producing effective results that reduce ongoing lifelong medical care. This obviously reduces the COSTS to the government military health care. When the government has to cover the costs of long term care for brain injured patients they have a motivation to find cost effective treatments that actually work. If the government has to cover health care for millions of children with autism, the motivation is then created to actually LOOK FOR THE CAUSE in addition to looking for answers in alternative medicine that will remove patients from lifelong health care. The way it is now private industry FOR PROFIT health insurance is in cahoots with Big Pharma and they like it that way.

Jake Crosby

Alison Singer, having resigned from Autism Speaks, deserves no place on the BSRC or the IACC.

Henderson

I'm even more terrified with the new DSM-IV criteria coming down the pike.

The "aspergers diagnosis is going to be removed!" brew-ha-ha is a smokescreen for the terrifying reality I now see before us:

The psychiatrists/psychologist really won't let go - the new DSM-IV won't say a word about autoimmune, mito, bowel, etc.

OMG

Henderson

I don't understand how on earth Alison Singer was appointed - this is terrifying! The psychologists/psychiatrists types are terrifying! This is NOT good. S--t! I'm terrified.

But - From BABY SIBLINGS RESEARCH CONSORTIUM
2007 ANNUAL REPORT:

"D: Gene Environment Contributions to Risk for ASD

Project Leader: Lonnie Zwaigenbaum
Steering Committee: Lonnie Zwaigenbaum, Helen Tager-Flusberg, Ezra Susser (Columbia University), Alycia Halladay (Autism Speaks), Andy Shih (Autism Speaks), Geraldine Dawson (Autism Speaks)

A proposal to conduct a feasibility/planning study to explore the role of
gene/environment interactions as risk factors for ASD based on our infant
sibling cohorts was submitted by the BSRC to Autism Speaks. The proposal
was approved and we expect to move ahead on this project in 2008."

This is AWESOME.

Also, the initiative at Drexel:

"Early Autism Risk Longitudinal Investigation (EARLI), will follow a cohort of up to 1,200 pregnant women who already have a child with autism. The study is considered one of the best-equipped to discover biological markers and environmental risk factors for autism due to its elevated autism risk pregnancy cohort, wide ranging data collection with extensive bio-sampling, length of time it follows pregnant women and their babies, and multi-disciplinary team of expert investigators."

This is AWESOME!!!

Guys, I love Autism Speaks. The problem is NOT Autism Speaks - the problem is the psychologists/psychiatrists - WHICH DO NOT WORK FOR AUTISM SPEAKS!!! Autism Speaks does NOT control science. They are just a drop in the bucket of funding (imagine government grants, pharma grants, state grants, university funding, etc., etc., etc.). Any funding from Autism Speaks - is just partial - and Autism Speaks cannot and does not control them.

The problem is "Autism" is a DSM-IV criteria disease and not a body disease - the psychologists/psychiatrists will do ANYTHING to keep it that way.

Why on EARTH would they share "their" pie with anyone? The pie is theirs - and they aren't giving a piece to mito, autoimmune, gastro, etc. without a fight.

We are witnessing the fight.

I am TERRIFIED that Ms. Singer is there.

Dr. Stephen C. L'Hommedieu

Katie,

I appreciate your frustrating and heart wrenching synopsis of the continued irrevocable impasse with autism research.

“Does BSRC understand kids like mine at all?” No, and they don’t care.

“Why would the BSBR staff attempt to study something they know clearly little about yet refuse to include parent experts like Wendy Fournier, Jane Johnson, Lyn Redwood?” This is because the true goal is to conceal the real cause-- vaccinations. Having sincerely dedicated people on the board endorsing productive research would be a threat to containing the truth.

“Why is the BSRC populated mostly by psychologists?” Because this perpetuates a perception that autism is a result of “autism Dads [that] are aloof, rigid, hypersensitive…they are obsessive, detached and humorless…they are not original thinkers.”

“BSRC’s goals for last year included more head measurement data gathering (God spare me now!) When will be move on from this one?” This will stop once they “prove” autism is simply because their brains are wired differently.

“…researchers say, yes regression exists but we have no idea why. Where is the urgency to figure this out?” Go back to the beginning and ask, “Does BSRC understand kids like mine at all?”

Parents will have to take the responsibility for getting their children help. There are alternatives for many. Toxic metals are always an issue.

Katie, you already knew the answers to your questions.

Thank you for your excellent reporting.

JenB

Maybe they are hoping to learn how to predict regression before it is triggered. "See, we told you this was coming, and of course those three+ vaccines given to your feverish child had nothing to do with it." That ability may also be useful in finding all those undiagnosed autistic adults so they can "help" them as well.

In reality, eye-gazing is probably just a nice, safe, attractive, non-implicating, non-profit-risking area of research, but throwing more funds into dotting all the i's and crossing more t's on what autism "looks like" on the outside at this point seems immoral.

BRSC - "Bring Real Science Consortium"

Is Dr. Piven actually trying to pin autism on "refrigerator fathers"?

I seriously do not know how you all have the patience to continuously deal with AS, NIH, IACC, CDC, NIMH, etc. on a regular basis. Takes a special group of people.

From all us parents, I say, "Thank You, Katie." When you finally take over AS, we will call this group: BRSC - "Bringin' on Real Science Consortium"

Off to the fray....
Jacey Capurso

AnaB

My best guess is that they focus so much on eye gaze because they want to diagnose kids younger and younger, so the condition can be dealt with by early intervention. This way they never have to really deal with the question of causation.

Teresa Conrick

Thanks, Katie for your continual reporting on these characters.

First, who appointed Alison Singer into this group? She is another Igor to Offit, or a sock puppet to Industry or whatever title fits. She does not represent any child injured by vaccines so this tells me this group is not honest and will not look at the true medical symptoms of vaccine damage = immune dysfunction - heavy metal/mercury damage - MMR causation/Varicella ie live virus damage as....Dr. Paul Offit is making up infomercials on "less antigens" and "10,000 simultaneous vaccines" faster than you can sing ..."588-23-HUNDRED..EMPIRE" (is that only in Chicago..?)

Anyway, second point is exactly what you said Katie -- why, oh why are DSM-carrying brain evaluators (MD, PhD, and SW) talking about an immune illness? They are trying so hard to keep autism in "their" domain as there is so much money to be made - research - psychiatry meds ---genes---the almighty orgasmic triumvirate. Then you have Catherine Lord and I love your description:

"Lord recently expressed her dislike of the IACC plan stating that there was undue emphasis on environmental factors! Right on, another ice age academic with her finger (not) on the pulse of the autism community."

I would say her finger is also in her bank account and in the power of an antiquated system of seeing behaviors as the end all be all to autism. She and Piven need to retire to Sunny Genes R-US Retirement Community- bye-bye.

"Dr. Joseph Piven, BSRC committee member, recently gave a speech to families and professionals. Piven dug out an ancient quote to share with the audience: “autism Dads are aloof, rigid, hypersensitive…they are obsessive, detached and humorless…they are not original thinkers.”"...Is this 2010? Is this guy out of his mind? He must be copying and pasting from Kanner back in 1943- how nice that he let's us moms off the hook this time compared to Kanner and Bettelheim...

from Kanner:

"One other fact stands out prominently. In the whole group, there are very few
really warmhearted fathers and mothers...... The question arises whether or to what extent this fact has contributed to the condition of the children."

Dr. Joseph Piven may be the next name slung in the FaceBook crowd who diligently made mincemeat of Bob Marshall from Virginia after he made his biblical bizarre thoughts known by saying "disabled children are God's punishment to women who have aborted their first pregnancy"...
(http://www.newsleader.com/article/20100222/NEWS01/2220318/Legislator--Disabled-kids-are-God/-s-punishment-%28Audio-added)

Maybe Bob and Joseph are cousins sharing the same stupid and ignorant genes. Now why can't Catherine Lord investigate that?

Elucidatus

Katie,

Say all you want about the BSRC absent minded psychologists but don't ever say anything about my "Entourage." That's all I got left of a life I used to live long ago. Anyways, I am just kidding. It's amazing to see that these knuckleheads are still looking at 10+ year old data.

Katie, please let us know how us parents can try and become a part of this committee. Do we have to pretend that Autism is all in the mind and start bringing measuring tapes to measure the size of our heads? It's never gonna change.

Ugh

Thanks Katie for finding out what is really going on and for speaking out against it! Is there no way to stop it all?! When I think of the billions that must go into all this useless research I feel so sick because I know our kids need real medical research so badly. I see autism as a purely medical problem that originates in the gastrointestinal tract but most people I have talked to see it as a developmental/genetic(=hopeless)disorder of the brain. If the general public drastically changed their concept of autism would they put up with research dollars going to psychology studies? What if the next autism rally was all about reframing? "Autism is a medical disorder. We need research to heal our kids' guts!" Might that be a step towards change? It is obvious from your article that change will not come from within these dinosaur organizations.

cmo

It is far, far beyond obscene that the US medical system, who sadly feel they are the best in the world...cannot locate the cause of a problem thirty times more common than polio.

With Autism Speaks, it is an endless "Let's walk in circles" / send in money picnic.... to build excitement for the next year, they decide to "walk in circles".... in the other direction.

Kevin

Time for a little prayer for patience and grace. We shall overcome!

Lorinda, My son has done phenomenal on Taurine as well. We were so shocked! I never expected such an innocuous amino acid to have so many benefits.

Brain scan of Autism Speaks board found nothing

This board is filled with Psychologists & Psychiatrists. Leave the kids alone. Scan the brains of the board of directors who assembled this group.

PhillyMom

"I think these people are totally over how stupid they look to us. What do they care what we think? We're either abusers or genetically mentally ill, take your pick. Or mix and match!" ~ Gatagorra

Guess what? I don't care what they think about me. They are either scientifically myopic or ethically challenged (or a combination of both). They are diverting research time and funds away from areas that may yield an improvement in our kids. At the end of the day, we know that we are doing everything we can do to help improve our kids health and future.

jen

These "academics" sound like a waste of skin (Dr. Piven and Cathy Lord). Today I worked in an elementary program with children who have autism. Out of two classes (six kids in each) there was one girl and 9 out of 12 would have been classified as ESL. (english as a second language). What is happening to all the immigrants??!! I think I know and I sure as heck think it's obvious enough for researchers to really watch them with all the catch-up vaccines.

nhokkanen

Thanks, Katie, for shining some light on autism funding vampires, whose irrelevant pet psych projects suck the lifeblood out of urgently-needed biological research into children's painful GI and immune system disorders.

Imagine donating to a kidney charity and learning your dollars were funding a study to observe irritability and irrationality in untreated diabetics. Ethical bankruptcy, right?

Why pay any more money to have "experts" stare at kids whose disorders of behavior and vision are manifestations of their medical conditions -- their biologically-based illnesses?

You're right; these atrophied researchers are "isolated from community input." They could learn a lesson about scientific dedication from you -- someone who has been forced by the necessity of reality to stop doing what you want, and instead do what you must.

Gatogorra

Thanks, Katie. Ugh-- eye gazing. It's like "wheeze gazing": let's just stare at the kid dying of an asthma attack and take data.

I think these people are totally over how stupid they look to us. What do they care what we think? We're either abusers or genetically mentally ill, take your pick. Or mix and match!

Going back to the fridge-parent theory does a nice job of quarantining the cause for the epidemic back to family of origin and discredits the witnesses. Who's going to listen to the views of monster parents who induced such horrors on their kids? Or parents who are genetic carriers for mental illness?

I'm totally not surprised that industry-biased panels are now mingling both contradictory views. It's kind of like a melange of fascism and Stalinism if you think about it. Imagine autism parents are diplaced victims of WWII, wandering along the battle lines on the Russian front, sandwiched by ideological dangers and horrors on either side.

In Russia, you could be put away for intellectual corruption: your beliefs caused your madness or you were mad because of your beliefs. To the Nazis, your views were evidence of genetic corruption. Damned either way.

For Freudians, it was once heroic to say everything stemmed from mom because it was taking the opposite stand from eugenicists about cause of behavioral/cognitive disorders. At least the Freudian types weren't calling for euthanasia as geneticists tended to. Kanner once went toe-to-toe in a published debate with the eugenicist Foster Kennedy, to argue against Kennedy's public call for "mercy killings".

But the fridge theory isn't heroic anymore; it's just another reactionary way to silence the witnesses and victims of a crime. Sickening.

Lorinda

To Cherry and other parents who have kids with autism AND seizures: My son is 17, with severe autism, epilepsy, and is non-verbal. He was one of the "vaccine" kids with regression of skills. He has back-to-back grand mal seizures. Recently, we started giving him Taurine, an amino acid, that is supposed to help with seizures. I didn't expect it to work, but it has been amazing! He has gone over 6 months without any seizures. If he gets sick or has an infection, it doesn't control them completely, but when he's not sick, it has been a life-saver. My son is like a new kid too! L-Carnosine (not L-Carnotine) is supposed to help too but we haven't tried that one yet. I would highly recommend trying these amino acids. They have no toxicity levels, are safe, and no side effects. If you want more info, feel free to e-mail me at: specialneedsadvocate@yahoo.com. God bless!

Craig Willoughby

I wrote about my experience with my son's seizures on my blog here:

http://my-socrates-note.blogspot.com/

We went through the whole gamut of tests; EEGs, MRIs, blood tests, etc. My son's tests came up with some interesting results. They did a 48 hour EEG and saw that he was having seizure activity right before going into REM sleep. So, essentially, he isn't dreaming. I found the whole thing extremely fascinating, to be honest. I guess we were lucky to get in contact with this Neuro as he is surprisingly good.

michael framson

Nature's clock is ticking and it seems Autism Speaks plans to run out the clock doing nothing, absolutely nothing, that will matter to the thousands of children like Christian. And the thousands more that will follow in Christian's footsteps.

Nature's clock is ticking and Autism Speaks seems infected with some pathogen that leaves them Brainless, Clueless, Useless (BCU). I guess that's the new normal for mainstream academic autism research.


Cherry Sperlin Misra

Kristine, Im somewhat surprised that you think that you cannot have another child because you have one autistic child. Considering that the millions of dollars of genetic studies have turned up almost nothing ,you have only to check out your environment . Do you have unusual sources of mercury or other metals in your environment? You can stop eating fish and cut out the high fructose corn syrup and get mercury dental amalgams removed. You can move to another area if you are near to a crematorium or factories that burn coal.Next, you have to plan which vaccines you will give or not give. You need to plan to breast feed and begin vaccines at 6 months or later or never. People who do not vaccinate their children seem to have very healthy kids- and highly intelligent too, by the way. You may choose to not have more children due to your inordinate fear, but in reality we know precisely how to avoid autism. The tragedy is that we cannot provide that information to the mothers of the world and if we could, in most cases their earlier brain washing about the safety and necessity of vaccines, would result in disbelief. If anyone here at AOA disagrees with me in this, dont hesitate to speak up.

Darian (nickname)

Don't even get me started! Every month, ond day of the month I have to watch helpless as my better half suffers through grand maul after grand maul after grand maul! He has had 14 gran maul siezures in a single day! And yet they still can't find what is causing them?

You all know probably how his poor mother feels, watching him suffer so much! How hard it is to lift a 27 year old man when he is tightly compacted in siezure mode to move him to a bed.

It breaks my heart every single time! He is so wonderful! He should not have to go through such a horrendous ordeal! But no one seems to care! And this article seems to proove this even further!

I will light a fire underneath thier hindquarters if I have too! I will not allow him to have to suffer without any help if I have breath left in my body!

They HAVE to get serious! To many lives are on the line while they screw around!

JB Handley

I really wonder who will have the courage to step up and call BS on all this ridiculousness. It will have to be someone inside the walls of Autism Speaks, since clearly when the mother of the child who inspired the founding of the organization speaks, they don't listen.

Kathy Blanco

Two things about seizures in autism. If caught early, it may stablize. Because I didn't I have a child who has non retractible seizures. Here is my theory. The earlier caught the better. First test for any or all infections, I mean out of the box thinking, such as Herpes 6B, known to cause temporal lobe seizures. Lyme like bartonella, known to cause seiuzres. Test for XMRV, test for CMV, test for EBV, all known to cause seizures. Even fungal creatures, like klebsiella, can cause lesions on the brain, again, treat. I am also looking into Gangyclovier, as several medlines suggest this would help those with seizures. Ketogenic or modiefied atkins diets, the other course. Of course, rule in or out metabolic problems, mitochondrial problems, and treat.. Treat especially the insidious LKS disorders (seizures while sleeping). With all the strategies, one must not forget, heavy metals, chelation, minerals especially magensium gluconate. Improve metallothionein. Improve diet, gluten and milk, bad for seizures. Try the Edgar Cayce castor oil packs, have a friend who actually cured her child with that (google that one). Rebuild myelin, important, CLO, omega threes...and make sure iron, copper and zinc are in proper balance. Those are just a few of the things to look out for. Oh, and don't take no for an answer.

K Fuller Yuba City

Like chickens with their heads cut off. The brains are disconnected but they just keep running around in circles.

Nicole Feaster

Katie,

Thank you for shedding light on the 'spinning of wheels' occurring on the BRSC. I agree with Anne Daschel's comments. Real change in research won't happen until the crisis point occurs.

Let's just take the next 3 years and stand around thanking one another and patting each other on the back and see what happens...

Autism is an epidemic

Katie, thank you for another great piece! I don't mean to go off topic here, but there is a petition of support for Dr. Wakefield which has been authored by leading Biomedical Autism physician Dr. Jaquelyn McCandless, MD. She is hoping to obtain as many signatures as possible, which will be presented as part of Andy’s appeal. The petition can be viewed at http://www.thepetitionsite.com/1/complaint-regarding-the-uks-general-medical-council-gmc-judgment-28-january-2010-concerning-andrew-j.

I would encourage everyone to read the petition and sign it if they agree. Also, please forward this link to anyone who you feel would be interested in reading it. Thank you!

Benedetta

Katie;
You are my favorite writer and reporter. I think (not that it will do any good) start forwarding all your stuff to my Congressman.

My favorite zingers:
1. Thanking each other - great one!
2. Lord Queen of the stone age! Right on the mark!
3. Eye contact not a top on family's list comapared to other things going on. So very true!
4. Neurolgist "Everything is fine" I heard that one for 14 long years! You made me feel better about our whole ordeal. I some times think I could have done more but I don't really see what that would have been. Not only can they not figure out the absentee seizures they can't can't figure it out - when a 12-14 year old comes in myclonic jerks (next stage)either - even when our kids have episodes of grand mal seizures either. Oh sure you have a busted nose from falling down but "everything is fine"

Katie - your right on the 'nose' - so to speak

Kristine

By the way, I doubt it would be difficult to connect dots between Piven/UNC and Geri Dawson. I'm sure they are old dept of psychiatry buddies. Hell, they're probably neighbors.

bensmyson

Thanks Katie for bringing this to my attention even though it makes me sick to my stomach.

Anne McElroy Dachel

Katie,
I like to call research like this autism busywork. A five year study monitoring eye contact is clear evidence that no one is alarmed about autism--yet. Autism is a curiosity. Most often, it's referred to as "a PUZZLE" or "a MYSTERY." Experts pretend that autism only involves problems with communication/social interaction. I can guarantee that more worthless research like this will be coming out, after all we have to be doing something about a problem affecting one percent of children. The only thing that will stop all this will be when autism finally becomes a CRISIS for this country. We're fast approaching that point. When autistic adults are lined up at every Social Security Office in the country applying for SSI, when they create endless waiting lists for services and housing, when state governments realize that they're never going to be able to support the masses of disabled adults, autism will assume an emergency status. The biggest question will be, Why didn't anyone warn us this was happening? I can't wait for the answer.

Anne Dachel
Media

Kristine

About Piven, don't even get me started. I told you guys that UNC autism research is in the dark ages. People move to chapel hill because of some mysterious autism services or help that does not exist. It is sad. Every year I get a brochure from Piven's baby sib imaging study. I should call them up and tell them to take our name off the list because I don't need another reminder about how I can never have more children because of the absolute fear of having another severely disabled sick child to take care of. And I don't appreciate them rubbing it in my face. By the way, they've been running that study or something similar (brain imaging) for YEARS like definitely before my autistic 5 year old was born. I'd like to start hearing about the results- I've yet to hear any interesting findings or really any useful information from those imaging studies.
Perhaps Piven could actually start doing something that helps these kids. My son's father works for UNC hospitals and the health insurance they provide discriminates against children with autism. It does not pay for therapies or really any kind of treatment for our child. Thank God they don't pay him enough salary either, because that allows my son to qualify for medicaid which does cover speech therapy at least!!

Steve

What's next? David Duke heads up a civil rights committee?

Where is the Congressional oversight here?

Robin Nemeth

Oh hey I like what you did with the AS puzzle piece picture -- turning it around backward like that. Very nice.

JF

It is a sad day for all autistic children when Alison Singer gets appointed to these discussions. She has never and will never speak for my child. I can't think of a more harmful individual to have as our kids' voice. Well, perhaps Kristina Chew but it's a close second.

Parent

Katie - I absolutely love your pieces and always look forward to your insight. Thank you.

Sometimes I wonder if these groups could find their rear-ends with both hands.

And let me thank the esteemed committee members . . . (eyes rolling).

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