Please attend this important 30-minute political briefing hosted by the Canary Party and EBCALA.

Mark Blaxill will add to his April 2nd presentation from the “1 in 88″ press conference, which detailed the most current CDC prevalence rates. Mark will also speak about the dangers of redefining autism using the new DSM V criteria which may end up erasing the autism epidemic as we now know it.

Ginger Taylor will look at the epic failure of the Interagency Autism Coordinating Committee (IACC) in the past and highlight why the newly appointed members will most likely keep the same failed trajectory.

Rebecca Estepp will examine the executive branch of the federal government and why more lobbying needs to be pointed towards the President. She will review how executive branch decisions made decades ago are now affecting our community. And most importantly, Rebecca will call for making autism and vaccine safety critical issues in the 2012 presidential election.

By Mary Holland, Esq.
EBCALA Managing Director

The Vermont legislature recently considered legislation to repeal the right to philosophical exemption from mandatory vaccination. The exemption allows people to refuse mandatory vaccination for themselves and their children without any stated reason, such as a religious one. The right to philosophical exemption is of paramount importance to those in the autism community who believe their children’s autism was vaccine-induced.

While the Vermont Senate voted in favor of the repeal, the Vermont House of Representatives voted overwhelmingly, 125-4, to retain the right to the philosophical exemption. I had the opportunity to testify before the House Health Committee on behalf of the Center for Personal Rights and submitted a letter in support of vaccination choice as a human right. The issue in Vermont will now go to a House-Senate conference committee.

Attempts to revoke philosophical exemptions have been part of a national campaign over the past year. A Vermont editorial notes that the proposed repeal was based on a template from the pharma-friendly American Legislative Exchange Council.

Mother sues bus company
over daughter’s treatment

By Timothy A. Adams, Esq.
EBCALA Board Member

On March 30, 2012, a mother in Connecticut filed suit against First Student, Inc., a company contracted to provide transportation to students in the Trumbull Public School system. According to the lawsuit, from March to May of 2010, a bus aide, Jennifer Davila assigned to care for a non-verbal 9-year-old student—Isabella Stagliano, instead, physically and emotionally abused Isabella during her trip to and from school. The abuse occurred under the supervision of the bus driver—Davila’s mother, Evelyn Guzman who was often preoccupied sending text messages while operating the bus.

Although school districts usually require employee backgrounds checks as a condition of employment (through the police or Department of Justice), the district may not require independent contractors, such as transportation providers, to also conduct thorough background checks of its staff. Districts rely instead on insurance policies and indemnification agreements with their contractors which help them to avoid liability, but do little (if anything) to protect students. As a result, the school district in this case was not named in the lawsuit and will likely avoid all legal responsibility. To prevail in their negligence claims against the bus company, the Stagliano’s attorneys must demonstrate that the bus company and/or Guzman, its employee/agent both owed a duty of care to Isabella and breached that duty by failing to protect the child from Davila who they knew (or should have known) would harm her.

We Need Your Help at Autism One

Will you be at the Autism One Conference in Chicago, May 24-27? We need volunteers to staff our booth and help to coordinate our silent auction. Please contact us to find out you can get involved.

*Registration is required for both attorneys and parents. Register online now.

Continuing Legal Education available: 7.25 hours with reciprocity in most states.

CLE Options:

• Attend Conference
• Watch Live Webcast
• Purchase DVD to Watch Later

Track 1 is a thorough overview of the many legal challenges that face the autism community. This track will pull together tremendous lawyers and advocates who are fighting for justice for the autism community.

• Know Your Parental Rights with DSM5 ASD Changes
• Know Your Family Law Rights
• Know Your Vaccine Exemption Rights
• Know Your Medicaid Rights
• Know Your Life Planning Rights for an ASD Family Member
• Know Your Insurance Rights
• Know Your First Amendment Rights:
  An Inside Look at Andy Wakefield’s Defamation Case

Speakers: Mary Holland, Katie Weisman, Jodi Bouer, Esq., Mitchel Perlman, PhD, Steven Koser, Lisa Colin, Esq., Kim Mack Rosenberg, Esq., Alan Phillips, Esq., Michael Sanders, Lisa Rudley and Dan Olmsted.

Track 2 is one of the best training available anywhere on what ASD parents, advocates and lawyers need to know about special education law. While Track 2 is not appropriate for the advanced special education lawyer, it is entirely appropriate for lawyers who have expertise in other areas and are seeking to deepen their knowledge in this area.

• IDEA Overview
• Preparing for Advocacy
• Assessments & Evaluations
• IEP Strategy
• Advanced Special Education Topics
• Questions & Answers

Speakers: Timothy Adams, Esq., Lynne Arnold and Mitchel Perlman, PhD.

Read session descriptions and speaker bios.

Alisyn Camerota: Parents need to listen to this next segment. There has been a shocking new report from the CDC that 1 in 88 children are now being diagnosed with autism. Just five years ago, that number was 1 in 150 children. So what is causing this dramatic jump? That’s what parents like our next guest want to know. Rebecca Estepp is the Director of Communications for the Elizabeth Birt Center for Autism Law & Advocacy. Rebecca, great to see you.

Rebecca Estepp: Thanks for having me Allison.

Alisyn: Your son was diagnosed with Autism in the year 2000 and since then, you have been a very vocal and involved member of the autism community. But even you, on Thursday, were shocked when you saw these new CDC numbers that now the rate of autism is 1 in 88 kids. What was so surprising for you?

Rebecca: Well I was shocked to finally see the number but in lots of ways I wasn’t shocked. I was really upset that the government hasn’t done more about this. They were put on notice in 2000 by advocates like myself. Parents testified in Congress, they did papers, we marched on Washington and yet nobody listened to us. And now fast-forward to last Thursday, when we have been yelling the sky is falling, the sky fell and 1 in 88 kids, 2% of our boys have autism. What I want you to understand though, this is for 12-year-olds. They were eight years old in 2008.

Alisyn: The numbers, these latest numbers are based on 2008 when these kids were eight years old. So you are saying that there is a whole slew of younger kids that have not yet been sort of picked up by the CDC and noticed.

Rebecca: Exactly. We are seeing very consistently a 12% increase in autism every year. And if we are only looking at the kids that were born in the year 2000 when President Clinton was in office, what does that mean to the kids born in 2008, 2010; what does it mean for the kids born today?

Alisyn: And when you say that you have been trying to raise, to sound the alarm of this for years, you have been using the word epidemic, the government hasn’t liked to use the word epidemic. But at this point, what do you want the government to realize?

Rebecca: I want them to realize that they have failed. If they were like an NFL team and they have gone 0 and 16 for the past 12 years, they need to go; they need new coaching; they need new staffing. This is not okay. The future of our country and our young people depend on that. If you keep increasing it by 12% a year, we are going to be dealing with 1 in under 20, for the kids that are born today; if we follow the same trajectory, if we use the same criteria and that’s staggering. That’s frightening for all the moms that are pregnant right now.

Alisyn: And of course no one has ever been able to get to the bottom of really what causes autism or why this spike is happening. Do you think that now that these numbers are so alarming that there will be new treatment methods, there will be new research?

Rebecca: One can hope. The thing that keeps making me hopeful is that last year Stanford came out with a very important study that showed that the model that the CDC has been following of a genetics-only type research is wrong. We know now that autism is mostly caused by environmental factors. And the thing that I know from the study that came out on Thursday is that the rate of autism went up everywhere in the United States. So that means that kids are not eating the same food, they are not drinking the same water, they are not breathing the same air but what they do have in common is the vaccine schedule. I have looked up the statistics. 98% of parents still give vaccines. That’s the common factor. These things were injected straight into their body and you have tens of thousands of parental reports of vaccine injury.

Alisyn: And obviously the vaccines have always been called into question and they have in fact been pooh-poohed by the medical community however, you are saying that it’s time to look back at that because that’s the common denominator. Rebecca Estepp, we appreciate you coming in and sharing your mother’s perspective on this, and hopefully these new numbers will get people’s attention. We really appreciate it.

Rebecca: Thank you.

Related Links

• Watch Video
• Download Mark Blaxill’s PowerPoint Presentation
• Read Press Conference Release

Speakers include:

• Mary Holland, EBCALA Managing Director
• Mark Blaxill, SafeMinds Board Member
• Katie Wright, National Autism Association Board Member
• Barry Segal, Focus Autism Founder
• Louise Habakus, Center for Personal Rights Founder
• Rebecca Estepp, EBCALA Communications Director
• Khalid Rehman, M.D.

Mary Holland: Thank you all for coming. Today is a somber day. We are here to examine how we have reached the catastrophic rate of autism in 1 in 88 children and 1 in 54 boys. This, the autism epidemic, is a national health emergency. We, a coalition, of grassroots organizations representing over 100,000 people, are sick and tired of all the happy talk about better diagnosis and uncertainty about whether the real rate of autism has increased. We say, “Enough. We are in a crisis and our government has failed us miserably.” First, we will hear from Mark Blaxill, Editor-At-Large of the Age of Autism newspaper, chair of the Canary Party and board member of the Coalition for SafeMinds. He is also the author of a book about the history of the autism epidemic. He will review in detail the CDC’s most recent statistics and put them in context. Please hold all questions until the end of the press conference. Mark.

Download Mark Blaxill’s PowerPoint Presentation

Mark Blaxill: Thank you Mary. We have the chart up here on the screen that shows the latest results reported by the CDC, the ADDM Network last week. The number that you see in the middle, that bar in the middle is the average of all 14 states in the report in ADDM of 1 in 88. We should pause on that. We have finally broken the 100 barrier in a day that we are supposed to be celebrating autism awareness. I don’t think any of us feel any mood to celebrate that we have exceeded 1% of American children born in 2000 suffering from autism. But obviously, as you look at the states, they vary. There are two states that had been excluded previously from some of the ADDM reports that are now over 2% of children, 1 in 50 diagnosed with autism. Nine of the following states have rates over 1 in 100. Only a handful, less than a handful, only three states are below 1 in 100 and those states Wisconsin, Florida and Alabama are higher levels than anyone who had ever spoken about autism until recently.

To put that in some context, when a number of us were first confronted with the diagnosis of autism in the 1990s, and I first heard about autism when my daughter was diagnosed in 1998, the number that we heard back then in terms of the prevalence was 1 in 2000, that it was rare. And then fairly quickly those numbers started going up and 1 in 166 was the number that you heard fairly frequently. And then more recently, the last time the ADDM numbers came out about two years ago, little over two years ago, we began approaching the 1 in 100 barrier. There was one study that said 1 in 91; there was another study, the last round of ADDM reports of children born in 1998 reported in 1 in 110 and then now, not only are we talking about 1 in 88, we are talking about some states, some very nearby states reaching the 1 in 50 barrier. To put that in context for Utah and New Jersey, that means the rates are 1 in 49 in New Jersey, 1 in 47, over 2% of children born in 2000 in those states.

You break those down, and a lot of people like to do this. I have a daughter affected with autism so I don’t always look just to the boys side. But everyone knows that the rate of autism is higher in boys something like in the ADDM numbers about 4.3:1 and so that means the rates in boys are absolutely catastrophic. New Jersey, if you were a male child born in New Jersey in 2000, your risk of being diagnosed with autism was 1 in 29. I always like to focus on New Jersey because I was a child born in New Jersey in 1958 and I can guarantee you that we didn’t have an autistic child in every classroom. But that’s basically the numbers that we are talking about. And again, rates of autism in boys in most of the states is over 2%.

And try as the CDC might to assign these numbers to better diagnosing or to better awareness of autism, it’s really hard to ignore the increases even in their own sample over the period that they have been reporting and they have a very narrow window of reporting. But in the six years that they have had enough of these states in the ADDM network to compare, they have seen explosive increases in almost every state on the order of 80% increases in just six years. That’s almost a doubling in a short period of time.

And then you can break that down over the total history of the ADDM reporting network and you can see some of the oddities here. ADDM has only reported from going back to the birth year of 1992 so we are really only looking at an eight year window of increase. Some of the states you can see by the dotted lines, Utah and New Jersey reported very early and then were excluded from the network and then as they have been included, their rates are the highest in the entire network by a very large margin. But across the board, there has been — in this drift with almost every state rising above 1 in 100 in this last round with a couple of exceptions. Interestingly, one state, only one state in the whole sample showing a significant decline in 2000 that being Alabama but the rest were seeing a very, very sharp increase that sustained overtime.

But those are the ADDM numbers and I think that’s the best that we have. That is the only source of really officially approved autism numbers that we have. But it’s important to understand how flawed, how critically flawed the CDC’s program of surveillance is. First of all, one of the things that you will often hear is that oh well the rates of autism have gone up but the diagnostic criteria have changed because the DSM-IV that was introduced in 1994 included Asperger Syndrome for the first time. So somehow we have these quirky smart kids who are Asperger’s and we are just being more inclusive and encompassing.

Well that’s an interesting hypothesis. You would think that a surveillance mechanism that was designed to get into the problem would actually test that hypothesis and say, if we are going to measure autism, we will measure Asperger’s and then we will measure the other categories, PDD-NOS and Autism Disorder. But the CDC’s ADDM network, for whatever strange reason, does not break out or does not report the breakouts of the data between those categories so that we have no way of evaluating the impact of Asperger’s category in the diagnoses. All previous measures would suggest that the Asperger’s number is a modest proportion of the total but we don’t know and the CDC won’t report it. It’s a crucial flaw.

And more broadly you have this vague claim that well we don’t know what’s going on with autism, maybe there is an increase but all we know is that we are, the medical community is doing a better job diagnosing. As parents, our jaws drop. That is the most ludicrous explanation of this increase that you could possibly imagine. There are autistic children in this room. I defy you to look at a child diagnosed with autism and be confused about what their diagnosis might be. This is the most obvious diagnosis that you can find. The notion that the medical community and the CDC is doing a better job diagnosing and that explains these increases is simply ludicrous but it’s irresponsible in the extreme when we are looking at a number of 1 in 88.

And then getting into the details of the surveillance I think there are any number of flaws. First of all, as you saw on the previous chart, the surveillance begins in 1992. Everyone who has followed autism numbers in the United States knows the inflection point for the increase was 1988, 1989, 1990. You would think surveillance should go back that far. We have consciously put blinders on our sense of history so that we can’t watch how far down the numbers really go.

We are reporting and the CDC emphasizes it’s a 2008 report. Actually it’s a report of 8-year-olds born in 2000. We are effectively 12 years behind the current cohort and 4 years behind where we could be in terms of understanding 8-year-olds. So the CDC is treating this as though it’s just an interesting phenomenon and maybe we will report on it when we get around to it. And then when you actually get into the data, it’s enormously biased. What they do is not good faith analysis. New Jersey, when it started, was the highest rate state in the entire sample. Then for God knows what reason, the CDC excluded New Jersey from the sample for many years until they just recently put it back. And it also excluded Utah. Now as they put back in those two states, we see those are the highest numbers in the sample and those will be pulling the average up.

So, all previous numbers were probably artificially low. But then even inside some of these states, New Jersey was added back. But we have only added back one county in New Jersey whereas the previous report said several counties. Crucially Brick Township, which was one of the first places where we observed the autism epidemic, was excluded in this most recent report. Ocean County is no longer in the ADDM network who knows why. But why would we exclude Brick Township, the place where we started doing surveillance if we were trying to do rigorous tracking, it makes no sense. And then obviously the exclusion of many states Minnesota, Oregon, Maine, some of the highest ranking states in autism prevalence and other numbers that we get from the Department of Education are not in the ADDM network. So we are adding states like Alabama and Florida where we know the rates are relatively low.

And then all of this is going on in the context of a recently erupting debate around the new diagnostic criteria that have been declared purposely to try to change the whole framework for autism diagnosis effectively. When the DSM-V is introduced, it will be erasing history, will be saying well the numbers that we are looking at going forward are not the same as the numbers going back so therefore it’s really impossible to tell what the trends really are but we just know we are doing a better job creating these new diagnostic criteria. I am cynical. If I sound cynical it’s because I am, because the CDC is falling down on the job and in the midst of the greatest crisis in childhood health we have ever seen, we all deserve better.

I will tell one quick story and I would like to talk about New Jersey and I can spend a lot of time on this but I will just point to a couple of facts. The red line there is data from Brick Township, from the Brick Township survey. It’s actually data that some of us obtained in an inquiry with the CDC. And the Brick Township was where the CDC actually broke out categories. So we have totals just for Autistic Disorder, the most severe form of autism in the DSM-IV. And when we asked the CDC to share with us the rates by year, the thing we learned was that in 1988 and 1989 there were 0 cases of Autistic Disorder in Brick, New Jersey and then over just a very short period of time through 1992 and 1993 that rate went up to 1 in 128, Autistic Disorder alone, not the broad categories that they reported in ADDM.

Then they started reporting ADDM data in the solid black lines there in the middle. And the numbers that we see that are here now 1 in 49 are part of the ADDM network. If you look at this perspective, the total perspective of history, you see that not only has autism gone up by 79% in eight years, it’s gone from 0 to over 1% of children in a decade. If that’s not a crisis, if that’s not a burning platform for asking what’s going on I don’t know what is. And therefore I think that’s where I would like to close and echo what Mary said, autism is a raging public health emergency and it’s time that we as an autism parent community demand accountability from the public health officials who are in charge of watching over this epidemic. And specifically the Obama Administration, President Obama campaigned on a pledge to be the autism president and this is what we are getting. I think what we need to have from public health authorities, from the CDC, from HHS is dealing with reality, face the emergency, declare it to be one. Obviously we need to redirect resources into environmental causation and I think we need new leadership and specifically we need resignations of people like Tom Insel at NIH who has been in charge of autism research for far too long and from the people at the CDC who are watching over the ADDM numbers and just complimenting themselves on the better job they are doing of diagnosing.

We need real community participation. There is a federal advisory committee that was recently announced. It was a slap in the face to the parent autism community in terms of the representation and who was included and who was excluded. An enormously politically loaded agenda is reflected in those appointees and that needs to change. And we also need action from Congress. We need investigation by the General Accounting Office of why we are wasting all this money on flawed research and flawed surveillance when we should be getting after the cause of the epidemic. We need Congressional hearings into this historic failure of federal agencies and we also need the federal government to tell the truth about vaccines and autism. Mary’s written a very compelling paper about the fact that vaccine injury is definitely part of the picture in the autism epidemic. We don’t know exactly how much of the picture it is but it needs to be on the table with the other environmental causes that we are looking at. Thank you very much.

(Applause)

Mary: Thank you Mark. Next we will hear from Katie Wright, Board Member of Focus Autism, the National Autism Association and the Coalition for SafeMinds all sponsoring organizations of this press conference.

Katie Wright: Thanks Mary. That was very impressive Mark. I am more here to tell a story about Christian. Christian is the reason my parents started Autism Speaks and he is right there in the corner with a blue shirt. Anyways, this is the first time Christian has ever come to anything like this so I am so proud of him. Nothing in life is easy for Christian. It started in 2004. I had a healthy, talkative, athletic, almost toilet trained two-year-old boy. Within the span of a few months, Christian stopped talking, he lost every word of his vocabulary, he could no longer climb stairs and he would scream for much of the day and night. He didn’t sleep through the night for the next three years. At the age of two, my son pointed proudly to his baby brother and asked to hold him. After Christian’s regression, he no longer recognized most members of his family including his brother. This all started after multiple vaccines. Christian had a high fever, screamed for hours, developed inflammatory bowel disease and chronic immune problems. Despite access to the best hospitals and the best doctors in the country, no one knew how to help. In fact, so much time was wasted by doctors performing test after test trying to find the rare genetic disorder that they were certain was causing his regression. They never found it.

Despite our best efforts, it took my husband and I years to meet people who knew how to effectively help Christian. It is only thanks to other autism mothers and fathers and a small group of doctors usually trained at the Autism Research Institute that Christian’s severe medical problems have finally been treated or at least controlled. Outside this small group, we have been alone every step of the way as have probably all these parents in the room — finding ways to treat our son. The CDC and the NIH have done almost no research on helping my child and the hundreds of thousands like him. Neither the CDC nor the NIH has developed treatment protocols, clinical trials, nothing. Instead, they founded a dozen autism centers for research and I have this in parenthesis in my thing. These bloated bureaucracies waste tens of millions of taxpayer dollars. They call themselves ACE which is even sadder.

ACE engages in early intervention and genetic research only, they provide no actual services to children living today.

Recently, Dr. Friedan, the CDC announced the new 1 in 88 number as if you were announcing 1 in 88 American children are left-handed. He has zero sense of urgency, absolutely zero sense of urgency towards stopping this epidemic or treating children now. All Friedan talked about was the need for early intervention. So Dr. Friedan, I have a 10 year old son with severe autism, chronic immune problems also who completely lost his speech because of autism and Friedan’s response would be early intervention. Guess what, my son got early intervention, he learned the signs. What now? We need a radical, radical change in direction. The entrenched unelected bureaucrats Coleen Boyle, Marshalyn Yeargin-Allsopp and of course Tom Insel have to go. They have failed our children for 20 years. Autism is a national health crisis. It’s going to take a lot more than a Learn the Signs campaign to stop this epidemic. We are nowhere, I mean nowhere in terms of stopping, stopping this epidemic of autism. ABA is the only accepted autism intervention and I think it was developed over 25 years ago. The only way forward is comprehensive independent research on the most aggressive vaccination schedule in the world as well as massive investment in environmental and biomedical research to help children living now.

Mary: Katie, thank you very much and thanks to Christian for being here. Our next speaker is Barry Segal, entrepreneur, founder and chair of the Focus Autism Foundation.

Barry Segal: Thank you Mary. Let me start with what Donald Trump says and I can’t believe I agree with him. Autism is out of control, a 78% increase in 10 years, stop giving monstrous combined vaccines immediately. Space out small individual shots. Small babies can’t handle massive doses. Get smart and fast before it is too late. I got involved in autism quite by accident. I sat next to a woman on the plane with a severely autistic son. We started talking and found we had mutual friends. I started reading about it and eventually met some people in the field and Katie Wright was major for that. I met her parents, Jenny McCarthy, Gary Goldstein, Dr. Romero and we had dinner with Bernie Marcus and his wife Billi and he is absolutely clueless on the vaccine situation. It became very obvious to me that vaccines single-handedly didn’t cause autism but with many vulnerable children they had a major impact and the leaders in the field all know this. And I have said this many times; there are two kind of people those that can and those that can’t. You don’t want to motivate people that can. You get a few good months and that’s it. What the CDC and their intervening agency, Autism Committee have been doing for the last two decades is atrocious. The people who have presided over the failure should be fired now.

Autism organizations are now calling for greater awareness. You have got to be kidding. Everybody is aware of the growing problem. Light It Up Blue might be good for fundraising but it does nothing to address the real issues in autism. Fundraising is good but the funds have to be used properly. Holly Peete is on the board of Autism Speaks and her husband’s book Not My Boy, he describes my son had a sharp fever, rash, etc., called the doctor, everything is okay, take Tylenol, and my son didn’t say Mother for four years. Holly knows better. She (27:16 inaudible) vaccine issue, what they should do is put me on the board and we will see what happens.

I have read hundreds of cases of immediate reactions to the vaccines, usually the same symptoms, earaches, antibiotics and reaction to the shots. But in my personal sphere, five people are telling me things like my son had a severe reaction, high-pitched scream, (27:57 inaudible) back, called the doctor, take Tylenol, he will okay. He was but he struggled in school where his sisters were tops in the class. This is significantly not being dealt with. The parents aren’t even aware of the causes.

I really shouldn’t do this but as far as the — concerned, to me, that’s like McDonald’s selling diet pills. Time is of the essence. You don’t need long term studies to verify this and you need immediate action and not necessarily by the agencies that have let this happen but by the people who care.

(Applause)

Mary: Okay. Thank you very much. Finally, we will hear from Louise Kuo Habakus, Cofounder and Director of the Center for Personal Rights.

Louise Kuo Habakus: Thank you Mary. I am from New Jersey. I have two boys. In New Jersey, 1 in 29 boys has an autism spectrum diagnosis. Infectious disease is yesterday’s war; today’s war is autism. This tragedy affects every single American. You think this is not your problem, this is your problem. This is your problem for personal reasons because autism does not discriminate; it’s coming to your home, to your family, to your children and to your grandchildren. It’s your problem for fiscal reasons; we can’t afford it. Autism is a financial debacle. It’s your problem for societal reasons. Our society can’t handle it. Social programs and schools are buckling under the strain. There are not enough group homes. Autism is a freight train barreling at us with no solution, no end in sight. It’s your problem for humanitarian and ethical reasons.

More than 1% of children, 2% of boys are being destroyed. Whatever you do to the least of these, you do also unto me. History will judge what did you do. Our community, the parent community is aware. We are aware. We are aware of our government’s denialism and inaction. We will not standby and watch. We have five demands of our government. One, when leaders fail they must be fired. We demand that HHS Secretary Sebelius fire those who have been in charge of autism policies in this administration. Dr. Insel, chair of IACC must be fired. The new members of IACC should be dismissed and the new chair of IACC should commence a new search for members immediately. Two, a sense of urgency is long overdue. We demand that Secretary Sebelius meet with a group of representatives from this coalition to discuss the autism health emergency. Secretary Sebelius does not get it; the situation is dire. Three, autism is a voting block and it is a Presidential voting issue. Our nation’s children are becoming brain damaged, what could possibly be more important? We demand that each Presidential candidate declare his position on the autism epidemic. In 2008, then Senator Barack Obama called himself the Autism President and committed to work to solve the crisis. Over 1% of all children means that there are a lot of autism parents. President Obama will stand on his record and we will vote. Four, where did the money go? Why did almost all autism funding go towards genetic research when peer-reviewed science tells us that autism is predominantly caused by environmental factors. We demand a study by the General Accounting Office to determine if corporate or other improper influences distorted research priorities.

(Applause)

Five, with leadership, there must be accountability. Our government is failing us. There has been skyrocketing autism in the face of government inaction. We demand Congressional hearings. And the government will form an oversight committee of the US House of Representatives. It is time for Congress to examine the role of federal authorities in this crisis. No Congressional committee has looked seriously at the role of conflicts of interest and the relationship to autism policy in over 10 years. As part of this process, Congress must examine the Vaccine Injury Compensation Program and how the VICP has been quietly acknowledging vaccine injury and autism for almost 25 years. Five demands: fire those in charge, meet with us, declare autism a Presidential election platform issue, follow the money, and initiate Congressional hearings. Five demands from a large community whose ranks are growing by leaps and bounds every single day. There is no place for anyone to hide. Over 1% of our children brain-damaged, it’s time to face the music. Thank you.

(Applause)

Mary: Thank you very much. So let’s take questions first from the press. Any questions to any of the speakers that you have heard? Okay to anyone opening up for questions. Yes.

Audience

Louise Kuo Habakus: I do. I have two boys. They are vaccine-injured. They sustained inflammatory bowel disease and neurological damage.

Audience

You know, when a parent has a child with cancer, the whole community rallies around. There is cakes and casseroles. People understand and they sympathize. With autism, people look away. Autism is permission to look away. It’s a label that says there is nothing here that can be done. The hardest thing for parents of children with autism is that there are very few doctors who will see us, who will treat the symptoms of our children. The money situation, it costs an arm and a leg to pay for these treatments. We are buckling under the weight of that as well. I see autism parents dealing with this tragedy, they are among the most heroic parents I have ever seen.

Audience

Thank you for asking. New Jersey is global and world, US and worldwide headquarters for over half of the world’s pharmaceutical firms. New Jersey mandates more vaccines as a condition of daycare, preschool and school admission than any other state in the country. I believe that vaccines are definitely associated with this crisis, absolutely. New Jersey is also known for its toxic exposures, lot of EPA Superfund sites, a lot of cleanup needed there as well.

Mary: I wanted to have another speaker come up, who we neglected first, and this is Rebecca Estepp, the Communications Director for the Elizabeth Birt Center for Autism Law & Advocacy.

Rebecca Estepp: Hi, thank you for all coming out today. I can provide a little bit of a unique perspective. My son is now 14, diagnosed at 2 years 9 months in the year 2000. My husband is a lieutenant colonel in the Marine Corps. He is a reservist. He has just returned from this fourth wartime deployment. All of these deployments happened after my son’s diagnosis. And recently, my husband I were discussing which has been harder, the four wartime deployments or dealing with my son’s autism and holding down the fort at home. Autism has been far more difficult than his time spent on the battle lines.

It’s been so frustrating to go to Washington time after time after time, ringing the bell, saying, “Please help us,” and knowing that it’s fallen on deaf ears, and it’s bipartisan. Both parties are ignoring us, and it cannot happen anymore. So for all the families out there in America, military or not, we want you report on this. The message has to get out, and I appreciate all of you coming today. Do you have any questions?

(Audience)

Mark Blaxill: Mercy, just I repeat the question; I will take that question. The question is the role of the detoxification in improving and helping promote recovery in children with autism. I think one of things as parents that we all learn is that there is hope in terms of treating autism. Detoxification is an important element in any program of treatment and recovery. There are no magic cures; there are no magic pills. There are some children that do enormously well and effectively recover full function with changes in their diet, with detoxification regimens, with immunological therapy. There are some children that, despite Herculean efforts by their parents, make only modest progress.

One thing we do know is that the science and the biology of what has gone on in autism is very complex. The causation – it’s hard for it to be all that complicated. I personally believe that causation is complicated because we have seen such a dramatic increase in very specific places and in a very specific time period. There is no way that some diffused set of amorphous factors all of a sudden hit the critical mass or the tipping point and all came together at once. Something simple had to happen.

But unraveling that is not at all simple. And what we do know in the science of autism is that detoxification systems like or the biology of detox, molecules like glutathione and every parent I know in autism community is an expert in glutathione. That’s the body’s natural detoxifier and the chelator. The mitochondrial system which is intimately interconnected with glutathione, the biology of health and recovery is intimately tied up. And different children respond to different types of therapies. Some children respond to various chelating agents; some children respond to detoxification boosters.

All of us in the autism parent community who have been forsaken by the medical community are basically on our own with a small cadre of dedicated doctors to whom we are eternally grateful. But they are marginalized. All of us are grappling with those issues. They are tough ones, and there are no simple answers.

Mary: Thank you, Mark. I wanted to call on actually Khalid Rehman, who is a physician and works with the National Autism Association, to further address some of these medical questions.

Khalid Rehman: Thank you very much, Mary. I am Khalid Rehman. I am a physician, and I am a grandfather of a 10-year-old boy with autism. I would like to add another demand, if you wish, that we must stop the Hepatitis B vaccine that is given at birth. The rate of Hepatitis B has gone down significantly, and the only risk that a child can have of getting Hepatitis B from a mom during birth trauma will be if she was positive for Hepatitis B. I have written to CDC, and I have returned response from them saying that, “Yes, we do not test the mothers. We do test them for HIV, but we do not test them for Hepatitis prenatally. So we don’t know which mom has and which mom doesn’t have.“ It’s as if they cannot do it because they do it for other things.

And the answer was which is really very interesting and I have it in writing is that another reason we do it, we just want to get the moms to get going with this vaccination thing right from the very birth. These are their words. Now Hepatitis vaccine has aluminum in it which is neurotoxic. And in some children, due to environmental factors or perhaps genetic factors or perhaps other factors, these children cannot tolerate these heavy metals. And the dose is the same if you are a preemie or if you are full-term baby, so that a little baby can end up getting tremendous amount of dose of aluminum for no reason.

Yes, when they get old enough and you think that they will be out in the community, they may buy (47:49 inaudible) get hurt, Hepatitis B may be reasonable, and they may be able to tolerate it at that time, But not at birth, not within the 12 hours, not even without parents knowing about it that they have been vaccinated. I would like to add that another demand to it because this is something that is easily doable, and we can avoid our children getting this kind of a toxic vaccine.

(Audience)

Khalid Rehman: They don’t need your permission, but you can deny it. And we have been telling my – we just had a granddaughter, and we had to stay on top of it. Every nurse should know; every doctor should know; pediatrician should know; anesthetist should know that this baby is not going to get Hepatitis B vaccine at birth. Thank you.

Mary: Thank you very much, Khalid. It’s a very good point. Yeah, I always wanted to invite Rebecca Estepp back to talk a little bit about developmental regression which is a very big part of the autism epidemic.

Rebecca Estepp: We got a question, it was a good question, asking about regression. The parents in here, raise your hand if your child was typically developing for period of time and then had a regression. I think you will see that of the parents here, that’s almost every single one. That suggests injury. I want you to think about that. That’s not normal; that’s not something you hear parents, grandmothers talking about look out for when your babies stop talking. That is something that is brand new, and we wanted to address that. Yesterday, I got to be on Fox News to discuss this, and I was talking about my frustration of going to Capitol Hill and saying, “The sky is falling. The sky has just fallen. The sky fell.” I want you to know that.

Mary: Thank you, Becky. Yes, Lisa.

(Audience)

Mary: Mark, we have a statistical question. If the children who are born in 2012 were diagnosed eight years later at the same rate as today, what would be the percentage, do you have an idea?

Mark Blaxill: Well, we will be projecting, and we will be presuming that nothing had changed in terms of the behavioral parents in the exposures that people face. I am hesitant to draw a trend line through this data. I would hope that at some point, we see a plateau or we see the numbers go down. I think that one thing that we can say is the population affected by autism is exploding. We have been dealing with this epidemic for over 20 years now, and the leading edge of the epidemic is aging out of the educational services system.

We have hidden these kids in special education programs and individualized educational programs, and those end when children turn, is it, 21, 22 – 21. And so a number of our children are leaving the schools. We are going to have the largest onslaught of adult dependent care population that we have ever seen in this country, and we have no idea what to do about this.

Somebody asked the question what the parents worry most about in terms of autism, what’s the hardest thing to deal with. I think the hardest thing to deal with is what’s going to happen when I am gone, what happens when I am gone to my baby. I don’t think anybody who has to deal with autism appreciates the challenge that it promotes inside the home. I think some of my greatest friends and treasured colleagues are in the autism community, and they do extraordinary things. I think, Louis said, it sets you off from the rest of the community and the rest of life, but I think it brings many of us together.

Some families tear us apart. Some people don’t make it through. Parents kill themselves; they kill their children; they do extreme things under the stress. It’s enormously difficult. And one of the things that causes these extreme behaviors and reactions on part of parents is despair that when they are gone, there will be no one to care for their child. And so we might as well declare it over now and not wait 20 years for it to happen.

So our country is not prepared for the aging population of autistic children. I hope that the number comes down. I hope that we don’t see an extrapolation of one to 28 in New Jersey becoming – one in 28 boys becoming one in two boys. But unless we come to grips with what’s actually going on, who knows where that trend line will go. It is going only in one direction and that’s up in eight years. And remember, we are only looking at birth years of children born from 1992 to 2000. We have no official visibility into what happened before (54:18 inaudible) basically zero or close to zero, what was happening after.

It’s hard to tell a parent the child – a pregnant woman today what should you do. All I would do is say to a pregnant woman today don’t trust what you are hearing from your public health officials or the federal government. Be a very critical consumer of the health care procedures that are performed on your child, and recognize that your doctor will not be your friend. Your doctor is pushing product on your child. And until you realize that the system is not set up for health, it’s set up to promote products and money and pharmaceutical revenue, you are going to put your child at risk.

Mary: Thank you, Mark. Kevin?

(Audience)

Mark Blaxill: Yeah, international comparisons are challenging because we have a lot of data from the U.S., and we have less comparable data from other places. One thing that I – it’s important to know about the United States is that roughly 50% of American children have some kind of chronic health condition. We would like to think of the autism epidemic as the canaries in the coal mine. This one reason we chose the Canary Party for our political activities.

But 1% is the most severely affected. If you think of EDD or asthma or obesity or a host of other chronic health conditions, one out of every two American children are chronically sick. That’s a crisis by any measure. I think one in 88 is a crisis but one in two is ridiculous. We spend more on health care. We push more products and services on to American children than in any other country, and we have by far the worst health outcomes.

We know that our autism rates are amongst the highest in the world, exactly how much higher than other countries, hard to say. The U.K. has rates that are – has a medical system similar to ours and has rates that are similar. But we don’t measure autism as aggressively in other countries probably because it’s not as high, and there is not as much reason. We also have much less aggressive interventions in other countries, lower rates of vaccination and most likely better health outcomes in other countries.

We know we have among the highest sudden infant death syndrome rates in the world, in the United States, yet we spend more on health care than any other nation; we spend more on vaccination than any other nation. It would be interesting to ask the question about the connection between our interventions and our outcomes, including not just autism but infant death, infant mortality. There is a whole range of total health outcomes that we have never measured. And one of the things that I think a lot of us have called for as parents is a systematic study of the total health outcomes in a vaccinated population and an unvaccinated population.

Everyone says, “We have studied this problem, and vaccines don’t cause autism.” Well, no, we have only studied one vaccine and one ingredient. No one has ever looked at the total impact of the most aggressive program of vaccine administration in the history of the world to ask the question, “Are we getting better results in terms of total health outcomes for children than when we did nothing or for less?” It’s an expensive study to do, but it’s the obvious question that we should be asking if we are confronting this controversy, this crisis — is are we provoking a problem with unintended consequences with total health outcomes that are in the serious crisis.

Mary: Thank you, Mark. Thank you all for your attention. I think all other speakers would be happy to answer questions informally. Thank you for coming.

Related Links

• Read Transcript
• Download Mark Blaxill’s PowerPoint Presentation
• Read Press Release

Watch video of World Autism Day Press Conference

Speakers include:

• Mary Holland, EBCALA Managing Director
• Mark Blaxill, SafeMinds Board Member
• Katie Wright, National Autism Association Board Member
• Barry Segal, Focus Autism Founder
• Louise Habakus, Center for Personal Rights Founder
• Rebecca Estepp, EBCALA Communications Director
• Khalid Rehman, M.D.

Statements were followed by answers to questions posed by reporters.

Video streaming by Ustream