Academy Award-nominated Film Promotes False Hopes

[Guest guest]

Please forward to Radford.

Dear Mr. Radford:

I know FC is is controversial, but it does work with some individuals. Just

because the scientific community did a couple studies and says it is not real,

is just as unprofessional as saying there is no way that thimerasol could be a

cause of autism.

I am the father of a 21 year old young woman who has been using FC for over 10

years. The scientific community has snubbed it because its basic premise is,

children with autism are intelligent and trapped in a body that won't cooperate

with them. Why is it so hard to believe that they may have intelligence trapped

inside? What about the Rapid Promting Method? I am sure you have seen or heard

of it on 60 minutes. If not, an Indian lady named Soma has been working with her

non-verbal, retarded son for years and by implementing her method, she found

that he is very intelligent. She has come to the US and is working with other

children and finding the same results. I am sure that the scientific community

will have a harder time disproving her method, because the child is independant.

In the 1950s and 1960s they thought that children with Cerebral Palsy were

severely retarded and there was no way they could have intelligence. Today that

thinking is outrageous.

Just because our children have bizarre behaviors and do strange things, does not

mean they are stupid. I don't think you can have an opinion of FC, if you have

not experienced its true effect.

The documentary " Autism Is A World " Is about a woman who started out with

Facilitated Communication and now types independently. The nay sayers still say

the FC is not real. This young woman proves that FC is not only real, it can

change the direction a family takes when dealing with there child or adult with

autism. It is not a cure. It is a communication method that works for some

people with autism.

My daughter is still nonverbal to this day, but she has not had a tantrum in 10

years. Tantruming use to be the only way she could communicate before FC. I

think that 50%, if not more, of the negative behaviors our children with autism

have are directly associated with the fact that they cannot let their wants and

needs be known. A person who can't speak and uses FC to communicate does have

reduced behaviors.

The scientific community can't accept this fact, because to do so would throw

out 35 years of research and published opinions to the contrary. They can't come

to grips with the possibility that these individuals could possibly be

intelligent people trapped in a body that won't cooperate. So, what do they do?

They go to the media and crucify it. They try to show how it can't be real. One

story on Frontline by a doctor from Boston was all it took to make FC go

underground. I am sorry, but many therapies and methods have no scientific proof

and work. Look at this country and its fascination with alternative medicine.

Over 50% of the U.S. use alternative medicine to treat their ailments. My own

mother has rheumatoid arthritis and was using prednisone and it made her sick.

So she has been using colloidal minerals and taking gelatin for 5 years and has

not had a flair up since. Why doesn't the medical community approve of it? They

can't make a fortune off of it. That is why. Why doesn't the medical community

embrace FC? Because many professionals that have spent years spousing our kids

are retarded and can't possibly know what is going on. How could they put their

egos aside and be more open minded? Not very easily.

You made a comment about families signing up for FC workshops and buying $800.

equipment. Where did you get your information? First, Doug Biklen and Syracuse

did not sell the equipment. We bought a Canon communicator ourselves for under

$250. Also, you can use a computer, a letterboard or a piece of paper with

letters on it. You do not have to buy expensive equipment to do FC.

All of a sudden, research dollars are pouring into autism research. Why, because

it is a lucrative business? If I started a business with no guarantees, no proof

of what I offer works, no guaranteed outcomes, no product, how far would I get?

Not very. This is not to say that all researchers, therapists, doctors are

greedy or don't have their heart in the right place. There are many

professionals that I have met over the years that are committed and care about

our kids. I also think that research is important. I just have a problem with

the " holier than thou " attitude that some of these professional have. Parents

with children in the autism spectrum are not crazy, they are committed to

turning over every rock, investigating every angle, looking into every

possibility to help their child. Some of the things we try may be considered

over the top. Well, try living with our kids day in and day out and see how you

would deal with it.

The medical community needs to get off of their pedestal and listen to the

parents and what they have to say. We know more about our kids than anyone. In

the old days, doctors blamed cold unfeeling mothers. Today, doctors can't accept

that a toxin (mercury) could be causing some of our kids to have autism. The FDA

recommended taking Thimerasol out of vaccines in 1999. Today the drug industry

still puts it in the flu vaccine that is given to children. Do we really need to

study it more to determine what the Federal government already knows? How much

more study do we need before we address this? When the rate of autism is 1 in

100, 1 in 50, 1 in 25? I am not saying that all children with autism have it

because of mercury or MMR or any one thing, but I don't need another study to

know that some of these kids are being affected by it and we need to change our

attitude about it. Again, the medical community and the pharmaceutical industry

can't afford to admit it. They have been trying to get a cap on damages for the

pharmaceutical companies for a long time. The Patriot Act had a last minute

amendment added to limit their liability. It was reversed when congress

reconvened. Just watch when and if it does get passed how fast they admit it.

There are congressmen that I have talked to that said the country can't afford

it. The industry would collapse over the lawsuits that will come. So, the

government will have to step in and deal with it.

I apologize for going on, but you stuck a nerve. I am passionate and I also have

been around for a while and I hear about almost any therapy out there. FC is not

a hoax. It does not give false hope for those that it works for. The world was

flat for years. Scientists can be wrong. As a matter of fact, I think they admit

to being wrong more than right. Isn't that the foundation of science? If your

wrong keep experimenting until you get it right. Well, the people who studied FC

got it wrong. They are probably the same people who say there isn't a huge

increase in the autism population. It is just better diagnosis.

Regards,

Ven Sequenzia

Amy's Dad and

President of the Autism Society of Florida

Miami, FL