Katie Wright

Children's Of Boston Plays it Safe With Autism Research.

Fish on bike By Katie Wright

In writing about Dr. Hanson’s article for Children’s Hospital of Boston, “Is Autism Really on the Rise?" (HERE)  my intention was to draw attention to the serious disconnect between how researchers perceive autism and how our children experience autism.  Nowhere is this disconnect more apparent than in research priorities. All too often we see autism research centers conducting almost entirely genetic/ face processing orientated autism research which hugely diverges from the actual research and treatment needs of ASD children, many of whom are chronically ill and have no place to go for medical treatment.

Matt Cyr of CHB wrote that I implied that CHB conducts the research they do for financial gain. I never said that and do not believe that to be the case. I see no nefarious motivations behind the institution’s dated and irresponsible autism research agenda. I think CHB is simply doing research that is safe, noncontroversial and relatively easy to get funded and published. However, this strategy has not served our children.

Let’s look at research CHB is currently conducting:

  • Spatial Processing, why autistic kids like electronic media
  • Face Processing
  • Let’s Face It (more face gazing)
  • 88 Middle Eastern Families and their genetic clues to autism
  • Tuberous Sclerosis face processing vs regular autism and face processing
CHB has received millions from the NIH and AS to study these subjects.  My point is not that all this research is worthless or that CHB doesn’t care about kids living today with autism. The problem is that these topics, such as facial gazing, are dated, grossly over funded, redundant and  offer little help, relevancy or hope to the families who secured these research funds in the first place.  Autism families all over the country have worked incredibly hard advocating for more research dollars for this disease. We have taken our children to Congress, to the Senate, campaigned relentlessly for the CAA, raised money from friends and families in the hope that we might finally achieve some causation and treatment breakthroughs that will help our children. Sadly, that has not been the case.  I challenge any autism researcher to find families clamoring for more eye gazing research or more research into Tuberous Sclerosis. What you will find are families whose children desperately need clinically applicable research into combating brain inflammation and regression,  PANDAS and autism, GI disease, dietary interventions, seizures and toxicity...

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Winner: Sean's Food Allergy Friendly Muffins

Sean's FoodThe contest winner is Andrew Kahan.

Managing Editor's Note: I had to add Katie Wright's comment on this post: You name it I have tried it. I have followed the recipes, read the books, etc but NOTHING I have done has ever come close to Jennifer Becker's SCD or GFCF food! Jennifer is an incredibly talented chef who comes from a family of chefs. She is like a walking encylopedia of autism and dietary interventions. Jennifer lives this everyday with her son Sean who has made significant progress since Jennifer basically taught herself how to care for his damaged GI system by feeding him the right foods. Of course Jennifer knows our kids need good quality therapy as well but she makes the food part easy. I have no financial interest in Jennifer's company but when something works for my son I want to tell everyone.

Jennifer Becker is donating a dozen fresh baked muffins - any FLAVOR to our winner. The muffins contain NO gluten, casein, dairy, soy, egg, refined sugar, rice, corn.

“Sean’s Food” is committed to producing the freshest, most wholesome foods that support the dietary restrictions often associated with autism, Asperger's, adhd, celiacs disease, crohns and colitis. Founded by Jennifer Becker, Sean’s Mother. “It all started when I realized how nutrition and diet played a significant role toward healing my son, Sean’s autism. ” We will personally prepare baked goods for those on restricted diets. All products are organic as well as free of gluten, soy and casein. Additionally, many are free of egg, sugar, corn, rice and potato. At “Sean’s Food,” we are dedicated to making things available that would otherwise require hours spent in the kitchen.

Visit Jennifer's Sean's Food website HERE. 

Children’s Hospital of Boston: Is Autism Really On the Rise?

Fat_cat_4 By Katie Wright

Hmmm. I wonder? Children’s Hospital of Boston which has been the recipient of tens of millions of our hard won autism research dollars still cannot decide if 1 in 91 American children on the ASD spectrum is real? To use their words, these numbers do not represent a crisis, a national emergency or epidemic but merely a “mystery.” It is all too “unclear” and confusing to say if the increase is real.

OK, does anyone else feel nauseated by this? The geniuses at CH Boston placed this most inane and borderline offensive headline on the front page of their website. Another researcher and non parent defended CH to me saying that it isn’t their job to develop an official position paper on whether the autism increase is real. Fair enough, but it was CH of Boston took it upon themselves to publicly declare that they do not believe there is an autism epidemic or crisis. I also called and e-mailed CH of Boston for a comment or clarification- no response. As a result of their non response I think their headline speaks for itself: CH of Boston would not describe the fact that 1 in 91 children and 1 in 58 boys on the spectrum as a crisis. What will it take? 1 in 10 boys, 1 in 2 for CH Boston to wake up to reality?

My second thought was a) who is giving CH of Boston money for autism “research”, b) how much, and c) what is CH of Boston doing with our research dollars? The answers in a nutshell are NIH and Autism Speaks science, tens of millions and basically studying genes. CH of Boston stars in the annual Boston Autism Symposium, This symposium is all genes, all the time, no environmental triggers, no innovative biomedical science, no vaccine discussions, no research about regression, little family input and has been basically been progress free. I swear, check out the past 5 years of symposiums- they are all the same! Same characters, same studies! Time stands still there!

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Dr. Nancy Snyderman: Danger! Married White Female!

Getty Lineup Managing Editor's Note: I added a little something at the end of this post for your enjoyment, my fellow dangerous types.  Tell us in the comments why you're dangerous.  ;) 

By Katie Wright

That’s right! Last week Dr. Nancy held up a pie chart illustrating the groups of people are most concerned about vaccine safety. You have seen these pie charts before, especially in the context of crime. Usually this type of visual aid communicates public problems like what % of women have been victims of a violent crimes or the % of men have committed crimes or are in jail, and so forth. Nice stuff.

While pointing to her pie chart, Dr. Snyderman angrily directs the viewer to the high % of “educated but misinformed white Moms” who have concerns about vaccine safety.  The gist of it we have been brainwashed by the internet and it is preposterous for us to question CDC safety standards. We have all heard Synderman’s rant before: these Moms are endangering children, Moms don’t know how to use the internet (appropriately!), health care workers (possibly married white Moms lurking in this category as well!) who refuse to get the swine flu vaccine are “selfish” and on and on.

Well, today I am admitting that Synderman has found us out. Yes, it IS a conspiracy! White college educated Moms of America are on a covert mission to ensure our vaccines are safe. We have secret gatherings at Banana Republic. Maybe you have seen us at Starbucks? We hold clandestine meetings at Whole Foods, because when we are not working on our evil plan to make vaccine safe we are buying organic food! Yes, Nancy it is all true! Our nefarious actions include reading and researching and using the internet (again, that dangerous tool!) to learn about vaccine safety issues.  Dr. Nancy apparently believes on she and select members of the medical community can properly use the internet and we should visit only their pre-approved sites? Dangerous white married Moms can also be found at Staples, buying supplies for our child’s home program. In short, we have infiltrated all of America!

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Katie Wright on the IACC: An Autism Mom Goes to Washington

A mother's protectionManaging Editor's Note: Katie Wright has written extensively on the Interagency Autism Coordinating Committee.  You can read her posts HERE..

By Katie Wright

You know how watching something on TV is never quite the same as the real thing? I’ve been listening to IACC meetings for 2 years and wanted to see this committee in action. My Mom and I also wanted to attend IACC in order to support the five families affected by autism who would be addressing the committee. Very rarely does IACC hear from parents of severely autistic children.

Dr. Insel started off the meeting apologizing to Lyn Redwood for Dr. Landis’ note. The apology was overdue and should also have been coming from Story Landis, but Redwood graciously accepted. The room was absolutely packed with autism families. My Mom and I were in awe of their abilities to get through the onerous NIH security check points and be at the meeting on time. Meanwhile at least 4 IACC committee members were absent. It seems to me that if a parent traveling alone with a severely autistic child can get to this meeting on time, so should IACC members. Even Insel pointedly remarked to the group that many, many people would like to sit on this committee and all members need to make a better effort to be present and on time.

As if on cue, federal members Dr. Jennifer Johnson and Dr. Lark Huang strolled in 45 minutes late holding coffee and snacks. Apparently, they were in no hurry.

Then, at long last, parents told the story of their child’s descent into autism. Elizabeth Emken was there with her handsome 17 yr old son, Alex. Elizabeth spoke about how loved Alex is and how grateful their family is for Alex’s good health and general happiness. However, Alex is severely disabled. He cannot communicate with more than a few words at a time, he cannot live independently, he will not get married or have a family and Elizabeth, like all of us, worries about what will happen when she is gone.

Judy Chinitz spoke bravely about her son, also Alex, and his nightmarish descent into regressive autism and concurrent onset of severe bowel disease. Judy spoke about spending years caring for her son as he endured a decade of bloody diarrhea, extreme pain, chronic illness and the inability to sleep. Alex was taken from doctor to doctor; no pediatric GI knew how to help Alex and most dismissed him as “just autistic.” Out of desperation Judy enrolled in a graduate school nutrition course after reading Elaine Gottschall’s “Breaking the Vicious Cycle.”  By the time Alex was eleven his health stabilized as a result of the SCD diet, but sadly Alex remained profoundly autistic. Moms like Judy wonder how different their children might be had they had the benefit of the sound medical intervention their children desperately needed.

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Dr. Landis Resigns from the Interagency Autism Coordinating Committee

Apologize By Katie Wright

I think our community should accept Dr. Landis’ apology. I too have made mistakes in public. Landis quickly took responsibility for the content of the note. Prior to her resignation, Landis pledged to support vaccine research. As a Mom of a once healthy and typical child, who is now profoundly autistic and chronically ill, I greatly appreciate Landis’ support for the study of children who have been adversely affect by vaccines and regressed into autism. I am sure these actions will galvanize IACC to reinstate the vaccine research proposal that Insel and other federal members had unlawfully removed from the strategic plan. Comprehensive and independent vaccine research upon the effect of multiple vaccines and their toxic adjuvants on babies’central nervous system has never been done. It is about time.

The only element missing from Dr. Landis’ statement was an apology to Lyn Redwood. As our community is well aware Lyn Redwood and Lee Grossman are the sole IACC autism advocacy representatives. Lee and Lynn are the only ASD organizational representatives of the nearly 2 million American families living with autism. When hostile IACC committee members like Dr.Yvette Janvier dismiss a mere discussion of our children’s suffering as “offensive” it has been Redwood who has urged the committee to come to grips with the fact that autism is frequently a multi-system disease with profoundly disabling co-morbid disorders. Redwood has continually advocated for research into regression, adjuvants, adverse vaccine reactions as well as GI disease and dietary interventions studies that would be relatively inexpensive and lead to a better quality of life for some many of our children. Lyn Redwood is a parent, a pediatric nurse and has been autism advocate longer than anyone in that room.

Redwood deserves and apology not only from Dr, Landis but also from Dr. Matt State and Dr. Ed Trevathan. I was astounded that these gentlemen sat back allowing Landis to accept all responsibility, for what was surely a group effort. I am honestly unclear about who wrote what. The parent who gave me the notes only witnessed State and Landis passing the paper back and forth. State is clearly as culpable for the sentiments expressed in the note as Landis. 

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Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?

Story landis Managing Editor's Note: Click on the photo to enlarge it. The PDF of the full note is clearer (HERE) and includes a bizarre comparison to the cochlear implant community and homosexuality.  There's an IACC meeting today, and you can CALL IN: See HERE.)

By Katie Wright

The way the Reagan administration responded to AIDS in 1981 is looking pretty good compared with how some NIH bureaucrats are now reacting to the autism epidemic.

Never before has a community of advocates and suffering kids been treated with such contemptuous disrespect as the NIH and IACC treats families affected by autism.

When we last left off with the IACC story, we learned that according to Dr. Yvette Janvier, GI diseases and immune disorders do NOT exist amongst the ASD population. In fact, Janvier was “offended” by the mere suggestion. (Click HERE to read about Dr. Janvier.)

When the subject of adverse vaccine reactions and vaccine court arose, Dr. Landis and Dr. Matt State rolled their eyes and furiously passed notes with each other each. No, this isn’t 5th grade; it is the Interagency Autism Committee, sponsored by the federal government. 

After the meeting adjourned a parent in the audience noticed a bunch of notes on the floor near where Lyn, Story and Matt had been seated. You will not believe what Story’s note said. Well, you will believe it but you will be appalled. CLICK HERE TO READ THE NOTE.

“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”

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Why is IACC's Dr. Yvette Janvier “Offended” by Sick Autistic Children?

Bad-Smell-Ad Managing Editor's Note: Katie continues to write on the travesty that is the Interagency Autism Coordinating Committee. Click HERE to read the Katie Wright category. If the name sounds familiar, it's that her Mom and Dad founded a large autism organization several years back. When the numbers were still 1 in 166. 

By Katie Wright

Nancy Wiseman and Lyn Redwood are parents of ASD children. They have both lived through the nightmare of dealing with an acutely ill autistic child. Nancy spoke eloquently about her daughter’s rages and how uncontrollable the child was because she  seriously ill. Wiseman discovered her daughter had PANDAS and bowel problems. Once this immune disorder was addressed and treated, Nancy’s daughter made incredible progress. Lyn spoke about all the ASD kids who are nonverbal and suffering horribly from both obstructed bowels or incessant diarrhea. Lyn and Nancy urged the committee to make addressing the issue of GI pain and treatment a top priority. Lyn emphasized that such research would be low tech and inexpensive compared to most ASD research, yet could tremendously improve a child’s quality of life.

In response Tom Insel said that his treatment committee did not talk about GI treatment and dietary intervention, nor is this a priority.

Insel has clearly decided, based on his years on non experience as a parent of a sick ASD child that dietary intervention research is not important, end of story, back to robot technology!

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Age of Autism Wrap Up. What a Week!

Proud-momBy Kim Stagliano

Like a proud Mama, I took a look at our lineup of posts this week and thought, "Wow." 

J.B. Handley kicked off the week with his post, Autism Not Really On The Rise. 96.7% Impossible. 

On Tuesday, Katie Wright wrote, IACC: They Had To Have it Their Way.

On Wednesday, Mark Blaxill ran, Blockbuster Primate Study Shows Significant Harm From One Birth Dose of a Mercury Containing Vaccine.

And on Thursday, Dan Olmsted turned his laser focus toward Hah-vud in, Crimson At Harvard.

Thanks to everyone who read and commented on the posts. Don't forget to forward our links, send them to FaceBook and Tweet them. We appreciate your support. This weekend we have our commenter of the week, cookbook contest winner, Kent Heckenlively and more.


IACC: They Had to Have it Their Way

My way or highway

By Katie Wright

When the IACC committee members were choosing outside scientists and parents to help inform their research plan, one would think they would reach out to different thinkers with diverse areas of expertise. Why create yet another sub-committee if IACC is only going to pack it with clones?  How will such an endeavor expose IACC members to innovative points of view or under-represented research opportunities? It won’t, but maybe that was the point!

Lyn Redwood and Lee Grossman nominated Dr. Bryan Jepson for the “What is causing autism committee.” Dr. Jepson is a father of 2 boys on the spectrum, published researcher, author and full time clinician at Thought House, a clinic treating ASD kids with medical problems. Fairly perfect credentials, right? But no…Team PreHistory, Insel, Landis, Singer, etc. all rejected this father and physician in favor of Dr. Matt State and Dr. Lars Perner, I suppose because genetics is such an under-represented area of autism research. Team Insel did not want to include a DAN! physician who actually treats autistic children everyday. No, Team PreHistory had to have Matt State and Lars Perner.

Neither Sell nor Perner bothered to take part in yesterday’s conference call. Well to be fair, Perner joined the call in the final 15 minutes and said nothing.

It seems to me, and I am sure many other families, that if you nominate someone to serve on this very important committee, that they actually a) want to do it and b) are committed to showing up. Bryan Jepson would have made this a priority and would have been an active participant and contributor to this committee. Listen, we are ALL busy and our families don’t want to hear excuses.

Story Landis could have seriously used the help of Bryan Jepson. Landis was the panel chair and was almost instantly lost amongst procedural points, current autism research content and the purpose of the committee. Landis may be a great steam cell scientist, I don’t know. But I do know Landis seemed frequently confused, exhibited little knowledge of both autism, as a disease and the current research literature.  She was a very poor choice.

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Best of AoA: Senator Harkin Takes On Tom Insel at Autism Appropriations Meeting

Sen tom harkin Senator Tom Harkin (D) Iowa, was named Chairman of the Senate Health Committee yesterday, succeeding Senator Ted Kennedy who recently passed away. More to follow.

Meanwhile, take a look at what this might mean for the autism community, in this post from Katie Wright from August 7, 2009.

By Katie Wright

Huge thank you's to the eloquent and courageous Autism Moms who spoke at yesterday’s Congressional hearings! View the hearings HERE.  They were so wonderful and made our community proud!

Mrs. Boyd (I did not catch their first names) said we do not have a choice about whether or not to aggressively research causation factors- including vaccines. She stated emphatically that she is pro-vaccination but parents  everywhere are choosing not to vaccinate their children in record numbers because they feel the schedule is too aggressive and no research has been done on the effects of 36 vaccines on babies under two.

Mrs. Halvorson is a farmer’s wife and mother in Iowa. She epitomizes every Mom in America struggling mightily to heal her sick autistic child. Halvorson bravely recounted her daughter’s terrifying descent into autism. Like so many of our children, Halvorson’s daughter regressed in autism and became seriously ill after too many vaccines too soon. Her daughter’s labs revealed toxic levels of heavy metals – metals which have assaulted this child’s brain and body.  The family must also struggle to find the money to pay for the child’s treatment, none of which is covered by insurance.

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Diana O'Neil Keeps Teaching Job In Part Because Kids Too Disabled to Speak for Selves?

Bad-teachers Managing Editor's Note: Katie Wright's post is below. I was struck by these offensive and in my opinion, discriminatory declarations in Florida's Herald Tribune article about the acquittal of teacher Diana O'Neil (See article HERE.The verdict followed a week long trial during which prosecutors attempted to prove that O'Neill's actions could have caused physical injury or mental harm to her students.That standard was made more difficult to prove than in some other cases because all of the students involved are so severely disabled that they cannot speak.They also have so many physical problems that there is no way to know whether she would have seriously injured them when aides say they saw her hit them on the head with objects, kick and push them.Although prosecutors argued some of the children received bumps on the head, bruises and scratches in O'Neill's classroom, the defense said that those do not qualify as injuries.The prosecution did not try to prove mental harm upon the children. Their mental capacity is unclear, and the prosecution would have had to prove that O'Neill's actions prevented them from acting in a "normal" manner.

By Katie Wright

Diana O’Neil is a brute whose violent actions in her grade school class would have landed her in jail had she not been a teacher. That’s right, O’Neil is a special education teacher who kicked, hit and pushed the special Ed children in her class. O’Neil fed the students roughly causing their mouths to bleed. O’Neil pulled the skin off a child’s lip. O’Neil hit students on the head with water bottles, activity boards and an arm brace.

O’Neil repeatedly verbally abused the special education students by labeling them “a waste of air” and “retards.”  Diana O’Neil stated that one child “looked like a butt hole” and that her students “could not be any more retarded.”

O’Neil is a cruel and violent individual who does not deserve to call herself a teacher. Teachers aides reported that abusive behavior had been going on for months. However, O’Neil has been allowed to keep her job after a brief suspension.

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How Thoughtful House and Drs. Wakefield, Krigsman and Jepson Helped My Son

Katie%20Wright%20and%20christian_1 By Katie Wright

My son Christian would still be living in horrible pain if not for the wonderful doctors at Thoughtful House. After  enduring 2 years of nightmarish, non-stop diarrhea and traveling all over the country meeting doctor after doctor who pronounced Christian “autistic but fine” or “he’s autistic, what do you expect?” or “he definitely isn’t autistic but we don’t know what’s wrong” Christian finally got the medical help he needed at Thoughtful House. Dr. Wakefield, Dr. Krigsman and Dr. Jepson were the ONLY physicians with the courage to address the autism/ GI disease and help kids like mine. While the AAP and the rest of the medical community turned their backs on our children for fear of uncovering why so many children were regressing into autism with GI disease, TH opened their doors and actually treated our kids. This determination came at great personal and professional cost and I know I speak for so many parents when I saw we are infinitely grateful.

Katie Wright is a Contributing Editor to Age of Autism. She has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half.  Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Katie Wright on IACC: "Can You Hear Me Now?"

Deaf ear Managing Editor's note: Katie Wright, Contributing Editor for Age of Autism wrote this piece for SafeMinds. Reprinted with permission.

By Katie Wright

I first read the Interagency Autism Coordinating Committee (IACC) member roster and thought why does the National Institute for Deafness have a seat on an autism research committee? Then again, maybe there was common ground! Maybe Dr. James Battey of the National Institute on Deafness should take over IACC entirely because he is an expert on the hearing impaired, a condition that seems to affect almost every member of IACC.

IACC was created as a direct result of the hard work of thousands of families with autistic children who called, wrote and even visited their congress people and Senators to get the Combating Autism Act (CAA) passed. Parents organized phone campaigns and sit-ins in offices of non-supportive legislators. My parents, Bob and Suzanne Wright, traveled to DC dozens of times to lobby for our families, in efforts to rectify the near total absence of autism research within the NIH. Families everywhere worked tirelessly, and at their own expense, in order to make the CAA law.

Meanwhile, Secretary Leavitt did nothing to help by allowing the National Institute of Mental Health (NIMH) to remain as lead agency in the effort to answer autism’s riddle and leaving its Director Dr. Tom Insel as the IACC’s Chair. As the scientific community’s understanding of this disorder has evolved, it is apparent that autism has biologic underpinnings that are treatable, meaning that our kids are physically ill – not mentally ill. The nod to NIMH as lead agency continues to place a stigmatism on those affected by autism and delays urgent research by promoting the old association of autism as a mental health disorder.

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The (Not) Combating Autism Act in Action

Paper soldier By Katie Wright

This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.

Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose.

Most of the bureaucratic committee members could not make a decision about how to get out of paper bag. The talking and talking in circles, the requesting for the creation “blue ribbon panels”, more subcommittees and more outside opinion, goes on forever. Why didn’t Tom Insel just appoint autism experts to this autism committee in the first place? Why are committee members constantly struggling to understand the basics of autism science and looking to others to inform them how to make decisions? They wait and wait and wait to make decisions. Insel wants to wait for more subcommittees, wait for more expert opinion, wait for a new administration, wait until the next meeting- wait to grow old? The only thing IACC is in a hurry to do is adjourn! Then when IACC finally does make an important decision, such as to fund 2% of CAA monies on vaccine safety research, Insel hastily undoes that vote after the meeting.

The public members include Lyn Redwood, who represents 100,000s of families, as well as Lee Grossman of ASA and Stephen Shore, who represent organizations serving people with autism. An ASD Mom, Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background. And finally, Alison Singer. Singer, as you may remember, absconded with AS’s IACC seat and now runs a mysterious autism org in her basement. This bizarre org is led by Paul Offit and a handful of autism ancient history researchers. Don’t our families deserve better than this? Don’t our kids deserve REAL representation from established autism organizations?

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Autism Families Shut Out at IACC

Don't care By Katie Wright

Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.

Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?

Elizabeth had explained to Alex that they were going to talk at an important meeting and Alex even rehearsed speaking into a microphone. Because no seriously affected autistic person can sit in silence for the 6 hour duration of the meeting, Elizabeth and Alex had to take many walking breaks. They knew it would be their turn to speak at 3:30. 3:30 was also the published public comment time on the IACC agenda website.

As any Mom reading this knows, tremendous effort is required to time everything just right in a formal situation. Bathroom breaks, snacks, water and walking breaks were all carefully orchestrated in order to be at the IACC podium, ready to go at precisely 3:30. Elizabeth and Alex did their part.

Apparently, Tom and some others were in a rush to wrap it up. I suppose they had more important things to do. Rather than sticking to the schedule (a fairly important issue anyone who knows anything about autism should understand) Tom decided to announce time for public comment at 2. Of course all the Moms and their severely affected sons were not in the conference room then, so Tom and Della, IACC’s assistant, decided to end the meeting 2 hours early. Things are going so great with the autism- why continue the meeting? What could there possibly be to talk about? Shortly thereafter Elizabeth, Alex and other ASD family members walked into a nearly empty committee room.

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From ALS to Autism: Failure Isn’t the Enemy, Denial Is.

Road to nowhere Managing Editor's Note: I have a dear friend who was diagnosed two years ago with ALS. He was told there is no treatment and no cure. He found a website called Patients Like Me, that offered info from patients, not doctors. He found a doc willing to run tests - and learned he was highly mercury toxic. The diagnosis center had given him yet another flu shot just last year. He's on the ALS equivalent of the DAN! protocol and has slowed the rate of descent. All because he didn't take "go away and die" for an answer. Familiar, indeed, Katie.  KS

By Katie Wright

Christian has had a horrible two weeks. He has begun to strike his head with closed fists. The self injurious behavior is bad enough but the inconsolable sobbing that follows is worse. We think Christian is suffering from severe headaches as a result of the sudden change in barometric pressure, but that is only a guess

As this was occurring I happened to hear on TV that it was Lou Gehrig day at Yankee Stadium. Derek Jeter was talking about how important it was to help find a cure for Lou Gehrig’s disease, also known as ALS. The little I know about ALS is that it is a horrible and fatal neurodegenerative disease. I saw a beautiful documentary on PBS last year called “So Far, So Fast” about 3 brothers, one with ALS, all working so hard to find a cure. I learned that most ALS sufferers do not have a family member with ALS and most researchers believe ALS is caused by a genetic predisposition triggered by environmental factors.  While doctors have gotten much better at recognizing and diagnosing ALS, there are almost no medical treatments. Sound familiar?

By now, I had a nauseous feeling and sat in front of the TV. The sportscaster then said that researchers have been looking for a cure to ALS for 70 years. 70 YEARS! 70 Years, and still so little progress?  Imagine 70 more years of autism with minimal progress? What the hell are we doing?

Continue reading "From ALS to Autism: Failure Isn’t the Enemy, Denial Is." »

Eric London Resigns from Autism Speaks

Wayback machine Managing Editor's Note: Dr. Eric London (founder of NAAR) has left Autism Speaks to join Autism Science Foundation, with Dr. Paul Offit and Alison Singer, also an Autism Speaks alum. Their stated goal is to conduct autism research with the exclusion of investigating vaccinations, as they are certain there is no correlation.  I'll send a T-shirt to the first reader who can tell us what's in the photo and why. (Kevin D. just won!)

By Katie Wright

Autism has been the most humbling experience of my life. I was wrong about so many things for so long.  Despite his nightmarish adverse reactions, I wanted, so badly, to believe that vaccines had nothing to do with Christian’s autism. It took two years of non stop reading, talking to hundreds of parents and traveling all over the country in search of a doctor who could identify, never mind treat, my son’s chronic medical problems, for me to painfully admit to myself I was wrong. In admitting I was wrong I had to let go of my fantasy that doctors know best, the CDC had this under control and all the right research was being done.

I could continue on in a state of denial, comforting myself, or I could dig deeper in all this ugliness. The choice was easy because my son was so sick and even top quality behavioral interventions were failing Christian. If Christian were mildly affected who knows how I would have reacted.

Eric London resigned from Autism Speaks yesterday. Everyone knows I do not speak for the organization (!), but I think I can safely say this is for the best. Despite being in the field of autism research for over a decade London has never doubted himself or his resolute belief that he knows vaccines never trigger autism. Such dogmatic rigidity no longer has a place at AS, especially in the face of the obvious exponential growth of ASD and heterogeneous nature of this disease. No one parent can, or should, attempt to speak for all.

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Don’t Panic- It is Just An Epidemic of Autism

Relax By Katie Wright

Simon Baron Cohen recently released a study in which he found that 1 in 64 Cambridgeshire children have autism. Any reasonable person would find such a result both astonishing and alarming. Has 1 in 64 British children ever had the same horrible disorder at the same time? If one broke down these numbers for boys I imagine it would be something like 1 in 25 UK boys affected with autism.! And yet Baron Cohen insists that  there is no need to be “alarmist” and that this catastrophic increase is due to “better awareness and detection.” Right.

In an interview with the British paper, “The Independent”, Baron Cohen, “dismissed suggestions that changes in lifestyle or environment were behind the rise. They put it down to improved awareness, and the inclusion of milder conditions.”  I know- it IS preposterous.

It gets even more absurd. Baron Cohen argues that “undiagnosed cases are likely to be at the mild end of the spectrum.” Based upon what? I lived in Cambridge for a year and experienced the National Health System firsthand. After I broke the index finger on my right hand (yes I am right handed) I was given an appointment to see a doctor and get an x-ray in three weeks time. My finger was flopping around and any kind of movement caused terrible pain. I called back my GP’s office to plead for an earlier appt and was told that this is the way the system works and I have to wait my turn.  That is just the way it is in the UK.

So if I understand this correctly, Baron Cohen believes that all these undiagnosed cases of autism are probably high functioning kids with minor impairments and no need for “labels.”

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Bob Wright Grandfather Warrior Speaks Out Against Autism Insurance Discrimination

Bob wright TRENTON, NJ (May 18, 2009) -- Autism Speaks Co-founder Bob Wright today testified before the New Jersey Assembly Appropriations Committee and the Senate’s Health, Human Services and Senior Citizens Committee alongside Assembly Speaker Joseph J. Roberts, Jr., parents of children with autism and other autism advocates in support of the state’s autism insurance reform bill.

“...Imagine the outrage if insurance companies refused to cover necessary treatments for children with cancer or diabetes,” said Wright in his testimony. “That is exactly what is happening with autism, and it must come to an end right now.”

Read the full press release at Autism Votes HERE.