God bless the United States of autism

[Guest guest]

RE: Baltimore Sun front page article: Study finds high rate of

autism – February 2, 2007

The autism shocker…….NOT!

So, Dr. Gerberding is finally admitting that the epidemic is

real? `Bout time. I attended a live press conference last year in

Washington D.C. where she assured parents and the medical community

that there was absolutely no autism epidemic. Of course, parents

weren't allowed into the room where she was performing for the

press. We had to sit outside and watch on a monitor. I can only

assume it was because she was afraid of the crazed mercury moms, or

maybe just our questions. While she promised that the high numbers

were due to added diagnostic tools and the expanded definition of

autism in the DSM-IV, we sat in that cold hallway outraged. Many of

us were aware that the DSM-IV expanded autism definition was not

adopted in the state of California, yet their numbers rose at the

same rate as the rest of the country. She also had access to the

California numbers. I know because I personally faxed them to her

office.

And while Dr. Goldstein (KKI) insists there is no evidence to support

that thimerosal (mercury) causes autism, I wonder if he can point to

an undisputed double blind placebo controlled study that absolutely

RULES OUT the possibility? If so, I hope you'll cite it for our

edification. Why should the absence of this necessary research

presume that this unnecessary preservative containing a known

neurotoxin is safe for our children? Is that what he calls good

science? It's what I call best guessing.

So as the truth rises like mercury in a thermometer in hell, don't

pull the " we just didn't know " line on us. In June, 2005 I

personally testified in front of the National Vaccine Advisory

Committee on Capitol Hill. I said, in part:

" On the CDC website the question, " How can mercury affect children? "

is answered this way: " If a pregnant woman ingests mercury at high

levels, harmful effects that may be passed from the mother to the

developing fetus include brain damage, mental retardation, lack of

coordination, blindness, seizures, and an inability to speak.

Children poisoned by mercury may develop nervous and digestive system

problems and kidney damage. " The list I just read from the CDC

website covers many of the most common co-morbid conditions

associated with autism. Another generation of America's children has

been put at risk …. In 1999 the Federal Government " recommended "

the removal of thimerosal from vaccines. In 2001, pregnant with my

son, I put more than 500 times the maximum recommended amount of

mercury in my body. [via flu vaccine while pregnant, still a gov't

recommended practice for pregnant women, young children and the

elderly] I want to know why – 2 years later – my son and I both

received mercury after the government requested its removal for

reasons of safety concerns? Thimerosal is mercury. Mercury is

poison. Please, protect America's children - recall every existing

vaccine containing mercury and explicitly prohibit the use of mercury

in all vaccines immediately! "

I was not the only speaker and not even close to being the best

educated on the autism/thimerosal debate in the room. As the mother

of a child who is diagnosed with autism, I had done my research and

joined a grassroots group of researchers and parents. Oh, and just

so you know, we also dropped information packets on the desk of every

member of Congress that same day.

Okay, so lets clarify here: the epidemic that wasn't now is and the

vaccine fears which have so many pediatricians laugh parents out of

the office have NOT been ruled out? Have I got that right?

So, what DO we know about autism?

Dr. Goldstein continues in the Sun article, " People have historically

criticized the availability of special education, but in kids with

autism, if it's done right, it really helps. " Well, I agree there.

But let's take a look at that, shall we?

I am aware of a document produced by this state which addresses a

holistic research based examination toward educating kids with

autism. It is the land State Autism Task Force Report. Most

parents of a child diagnosed with autism/PDD-NOS haven't read it and

don't even know it exists. Wouldn't this be something the state of

land – after having poured tons of time, effort and resources

into – would want every parent of a child diagnosed with autism to

have access to? While not hidden from public view, it is hardly

being handed out to every parent with a new diagnosis. It states the

truth – that early and intense intervention is critical to giving

kids with autism a chance at autonomy as adults.

Yet even at KKI, the neuro-gurus don't have the most efficacious

method of treating autism (40 hrs/wk Applied Behavior Analysis for

kids age 3 - 5) on the menu. Why? Apparently, they are too

busy " studying " our kids to give them the appropriate intervention

they need. Are we to assume that KKI is unaware that ABA efficacy is

unilaterally more effective for children with autism than

their " eclectic " approach? In a 2005 study comparing published

research on autism treatments presented by Green, PhD reports:

" Proportions of children who moved from delayed to normal range on IQ

(which correlates strongly with academic performance and overall

adjustment):

Intensive ABA: 42/98 = 43%

Typical special ed/El: 4/61 = 15%

Intensive eclectic: 4/28 = 14% "

But wait, the problem gets even more interesting folks. You see,

Baltimore County uses KKI's " eclectic " approach as a model for

teaching kids with autism in their newest early autism classroom.

(As do many, if not most local school districts.) Let's go back a

step here - has the " eclectic " approach been proven effective? Well,

not according to recently published research: among the conclusions

of those who have already studied autism interventions, " …findings

are consistent with other research showing that IBT [intensive

behavior therapy] is considerably more efficacious than " eclectic "

intervention. " (, Sparkman, Cohen, Green, Stanislaw, 2005) The

same study goes on to proclaim: " " Eclectic " intervention … is widely

available to children with autism enrolled in public early

intervention and special education programs. " They continue, " In

short, the effect of " eclectic " treatment … was to flatten or

decrease rather than increase the slopes of the developmental

trajectories of most children. Based on these findings, we would

project that those children will lose more ground to their typically

developing peers the longer they remain in such intervention

programs. "

So WHY, Dr. Hairston, is it impossible to get intensive ABA on an

IFSP or IEP where a child is diagnosed with autism or PDD-NOS? You

can site the high cost of ABA, but what do you think will happen to

these kids 20 years from now? At least their lifelong

institutionalization won't have to come out of the education budget…

Though the cost-benefit estimates for early intensive ABA estimate a

savings range from " $187,000 to $203,000 per child for ages 3 – 22

years, and from $656,000 to $1,082,000 per child for ages 3 – 55

years. " (son, Mulick, Green, 1998)

For all the moms and dads who are just getting the diagnosis now –

these outrages should be your wakeup call not to blindly trust the

CDC, IOM, FDA, AAP or your local pediatrician. At least not when it

comes to autism. And don't think your IFSP or IEP teams necessarily

have your child's best interest at stake. Most teams look at this

research as a slap in the face – as if we're insulting them for not

being able to teach our kids. Hello? They can't and they shouldn't

have to. If you talk to a public school teacher " off the record " I

suggest that - in most cases - they'll tell you as much.

Take my word for it – if you want to help your kid, go get yourself a

couple of friends who have kids with autism. You'll find they are

much more knowledgeable, considerably more reliable and won't ever

tell you that they have all the answers.

Can't wait til Gerberding, KKI and the State of land catch up

with the reputable research the parents have been pounding them with

for the last few years. I'll be watching the news with baited breath.

God bless the United States of Autism.

Deb Gordon