Autism Speaks

[Guest guest]

Kendra Pettengill has just joined the EOHarm list. I don't point out

every new member who joins, but Kendra just had this commentary

published about Autism Speaks. (Kendra, fwiw, Bob is

subscribed to this list. And where did you get that NAAR is a spinoff

of CAN?) -Lenny

September 5, 2006 at 13:42:21

Autism Speaks

by Kendra Pettengill

http://www.opednews.com

Not surprisingly, Autism Speaks has very quickly become the largest

Autism organization in the U.S. The organization has the largest

fundraising capacity and far reaching advertising ability of any

Autism Organization in the world. Why is this not surprising? Because

the founders of this group are none other than the President of NBC

and his wife, motivated by the diagnosis of their own Grandson with

Autism.

The disappointment in this new and powerful organization is the

direction they decided to go with their goals and fundraising efforts.

They are doing what so many organizations have already done and

continue to do, raise money for 'research'. The unfortunate part of

this is that ARI (Autism Research Institute) was already doing this

and so was the M.I.N.D. Institute and so was N.A.A.R. an offshoot of

CAN (Cure Autism Now). So, research into Autism was not really the

most needed function of a new non-profit here in the U.S.

What is really needed, and does not exist in any really functional

form, is help for the already existing hundreds of thousands of

children already affected by Autism.

When I first heard about the diagnosis of their Grandson, I guess I

knew they would start some kind of an Autism non- profit. I was giddy

with anticipation that finally here was a group, started by people

with far-reaching connections, the potential to earn huge sums of

money that could actually help people dealing with the affliction of

Autism today. I was crushed when I heard that they would be just yet

another 'research' funder. We still have hundreds of thousands of

children being written off as expendable.

Why? Because we know that there are treatments available to children

with Autism that can make a profound difference in the outcome of

their lives. Treatments that have brought many children to the point

of being determined as " indistinguishable from their peers " . Many of

these children have 'lost' the diagnosis of Autism and are fully

functioning in typical classrooms with minimal or no support of

special education programs and they are excelling. But we know all too

well, that these treatment programs are very expensive, educated

providers are too few, and for the most part insurance companies are

able to exempt Autism treatment of any kind, leaving treatment out of

reach for most American families.

An organization with the capabilities of Autism Speaks, could have

made such a difference in the real lives of people living with Autism.

ly, we have all seen too much from organizations such as the

American Cancer Society, the American Diabetes Society, ad nauseum

that all cajole us to come out and " WALK FOR A CURE " , and no cures

seem to be forthcoming, and most certainly not in our lifetime.

We all also know that the primary funders of these organizations are

pharmaceutical companies that by their own admissions, are not looking

for a " cure " , but simply more and more new and potent drugs to keep

you alive a 'little longer' or maintain you on those drugs for life.

There is no profit in a 'cure'. Those independent researchers that may

be looking for a real cure are simply not funded by these national

organizations because the pharmaceutical boards have the final veto

power over who is funded. Cures are counter- productive to the goals

of the pharmaceutical companies.

There is not a single National Autism Organization in the United

States that actually helps families obtain meaningful therapy for

their child. ABA (Applied Behavioral Analysis) is one therapy that has

been scientifically studied and proven effective in helping treat

children with Autism. Even parents doing Chelation therapy and

Biological Treatments usually combine these therapies with some kind

of an ABA program.

I will use my state of Oregon as an example. Here in Oregon there is

no meaningful nor affective services offered to families. Doctors are

uneducated in the newest advances in biological treatments, and really

have no idea where to steer parents that have just received a

diagnosis for their child. Our schools, like in other states were ill

prepared for our current epidemic and are overwhelmed, undertrained,

and simply looking for ways to cut costs to give all autistic children

something, even if it's worthless and ineffective, which is what is

happening. Parents are left to investigate on their own, if they have

the initiative. Many parents simply accept their 'fate'

and leave it to the schools to offer whatever services they may offer.

Their children will never 'catch-up' with their peers and their

predicted outcome will not change.

Some parents turn to research, including the internet and are

inundated with stories and hundreds of Autism organizations formed

simply to 'inform' or 'educate', at least from their take of the

issue. If the parents are educated and truly savy with their research

they find the most mainstream programs that are truly making a

difference in the outcome of children with Autism, only to find that

the treatment they now seek is financially out of their reach. Some

will be stripped of what finances they did have by charlatans and

hoaxes willing to take every last dime of a desperate family looking

to simply help their own child.

A good ABA program, directed by a Board Certified Behavior Analyst, a

trained staff of therapists, offering the recommended 40 hours a week

of therapy would run a family anywheres from $40,000.00 a year to

$60,000.00. If your family's yearly income is less than that, your kid

is just 'tough- out-of-luck'. That is the sad reality of most Autism

Treatment. It is reserved primarily for 'the rich' or doggedly

determined and creative. Some families mortgage their house, their

retirement, their futures to provide this treatment. Which means we

may not have to support their child for a lifetime, but we will now

need to take care of the parents, that otherwise would have been

financially secure. This is where the most help is and has been needed

for some time. And, to truly make a difference, only an organization

with the potential size, connections, and earning potential of Autism

Speaks could tackle this immense problem on a national scale.

My guess is that the little grandson of the president of NBC is

receiving 40 hours a week of ABA, probably directed by one of the most

renowned and prominent ABA providers in the U.S., and probably was

never put on any sort of a 'waiting list' to gain access to that

provider. That is great for him, and will probably make a huge

difference in his outcome in life. It is a mystery to me how that

didn't bring them to the revelation that it is probably children here

and now, living with Autism, that need the most help.

I picture regional centers providing outreach and providers to

families in every state in the U.S. I pictured 'scholarships' to help

families in more remote areas get access to life saving therapy. I

pictured teams of ABA providers helping many families at once instead

of just for a single family, cutting costs and overhead. I pictured

education and literature to educate medical providers about where to

steer parents for the most effective intervention available to

Autistic children and their families. Perhaps with this kind of

support more than 2% of Autistic children will receive life-changing

therapy and state-of- the-art biological interventions, including

chelation if necessary.

As it is now, I see Autism Speaks as just another fund raiser, going

through the motions of supporting 'the cause', a 'feel- good'

organization that will never have a serious affect on the children

with Autism that are alive today. Perhaps in twenty years they will

have developed some new anti-psychotic drugs or anti-depressant to

drug my kid into not looking autistic, but will never touch the

underlying reasons for Autism or treat the underlying causes or

symptoms of Autism. ABA on the other hand has brought my child out of

a darkness, into a world of communication, friendships, logical

thinking, full functionality in the typical world, while never ever

using any drugs, and obtaining a new diagnosis of " indistinguishable

from her peers " . This should be the noble goal of any organization

wanting to change the face of Autism. This is the one thing no

organization is offering.

State or local organizations supporting these efforts can only afford

to offer information, advice, moral support, and their own experience.

There is nothing out there to offer services, scholarships, real hands

on therapy...unless you have a whole lot of money. In my opinion

Autism Speaks has been the biggest disappointment since I was thrown

under this speeding Train called Autism. The glittering generalities

and empty promises pour forth, and the fundraising walks on tracks in

cities throughout the U.S. are under way, pouring forth huge sums of

money that will never 'touch' a child that is today currently

suffering from Autism.

I have lost hope for the hundreds of children I see around me every

day, in my own local area that were left behind, while my daughter

'recovered' from Autism. The others never had a chance, and they are

not going to have one any time soon. In another 10 years, 1 in every

166 children is going to swell into the social security system, right

along with the baby-boomers, and it will bankrupt an already shaky

system. The difference is these kids never were able to contribute to

the system before using their funds. And all, because no one took a

step to change their outcomes, and try to make a difference in their

outcomes.

Autism Speaks like every other Autism organization in the U.S.

has in my opinion, written off the existing half a million children

that are alive today with Autism. These groups are looking only to a

'possible' halt to the future children yet to be born, and/or drugs to

push to the current sufferers. Are we suppose to say Thank You? No Thanks.

Kendra Pettengill

Roseburg, Oregon