Past history of hard feelings with and SCIA

[Guest guest]

Karla,

You are right there are hard feelings with and SCIA. Maybe I can

explain what happened in the past so you understand the posts people have

made. , Bill, Kathy and Jen all have some legitimate concerns. Having

said that, I do disagree with the post that said this is the site and

it should be for discussing . I think we all should discuss anything

and everything that could possibly help any child with Autism.

and I were best friends and would talk several times a day in order to

further the mission of SCIA. As a matter of fact, it was my husband who

coined the name Stop Calling It Autism (SCIA) for Dr. Goldberg. We used it

as a title for something I ghost wrote for Dr. Goldberg. liked it and

took it for the organization, failing to ask permission from Dr. G.

Kathy on, Bill Klimas and I were board members for SCIA. That is how

much we believed in what was doing. But that all ended after did

some things that were unethical. Like many before him including some

doctors we know, his ego got in the way of doing the right thing and hurt

what he was trying to accomplish. Having said that, I still believe in

SCIA's mission that Autism needs to be recognized for what it is, a medical

disease rather than psychiatric problem.

My concerns first started with giving medical advice to parents who

were on the SCIA list serve (which no longer exists). is very

intelligent and definitely had the desire to help his son and others.

However, he does not have the medical background and was just a little too

sure of himself. told me he thought he knew as much or more medically

than people who went to medical school and are highly skilled in what they

do. People like Kathy and Dr G who have spent a lifetime learning the

science of how to help our kids.

As board members, we warned over and over again to stop giving out

dosages and other stuff that could put our mission at risk. He toned it

down some, but continued despite my daily reminders that he shouldn't do

this. I know he just wanted to help children get better, and had his heart

in the right place. However, he failed to acknowledge each child is

different and has different medical issues. As a result what helped

could hurt another child who is not being followed medically. was

putting kids at risk. I repeatedly told him it was okay to say what worked

for , but not give medical advice.

That was only the beginning of my concerns. wanted total control of the

SCIA organization without any checks and balances. He came up with bylaws

and asked the board to sign off on them.

We would not approve bylaws that put one person, , in the position of

founder/executive director/chairman with veto power over virtually

everything. I told although I know he would never do anything wrong,

we needed bylaws that would protect the organization from anyone and

everyone, even him.

did not like how we wanted the bylaws changed. He did not want anyone

to question what he thought was right. His solution was to replace the

entire board of directors without notifying any of us. After months of hard

work, he fired us. He replaced us with his wife and sister without so much

as a phone call.

He thought what he needed to accomplish for kids justified any action. What

failed to understand is that no one individual is more important than

the mission or the organization. SCIA wasn't his, even though he started it.

It belonged to the kids we were trying to help. I'm sure his wife and

sister are great people. However, it is the diversity of ideas and coming to

consensus that helps an organization accomplish great things. A leader who

is insecure needs everyone to agree with him does not benefit any group.

I thought and I were friends and was so excited about what we were

trying to accomplish. To be honest I missed after he canned me from

the board. I was used to talking to him daily about what we hoped to

accomplish for all children with autism. I'm sorry things ended this way,

but I must caution others about working with . Although I don't

completely understand what he is saying medically about mitochondrial cells,

I do know Autism is a complex disease and not the same for everyone

affected. If Autism were that simple, it would have been cured a long time

ago. Blindness might be an analogy that easily exemplifies what I'm trying

to say. There are many different causes for being blind, but the end result

is lack of sight. My kid has and needs antivirals and antifungals to

function normally, but that may not be the cause or solution for other

children with Autism.

So there is a reason for the concern surrounding SCIA and the posts. We all

wanted to succeed and still do, but because of past history have

questions about SCIA. Hope this helps explain why people posted as they

did.

Best,

Marcia

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2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTI5Mzc4MDMxOA--> Re: Autism according Stop

Calling It Autism! (SCIA)

Posted by: " Karla Fine "

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p%20Calling%20It%20Autism%21%20%28SCIA%29> karla_fine@...

<karla_finesbcglobal (DOT) net>

karla_fine@...

Thu Dec 30, 2010 8:00 pm (PST)

Why are you all so hard on and his posts. He is just like any

other parent telling us what worked for him and his son. He is sharing

information. He is not forcing us to do what he did. I don't get it. It

almost sounds like a personal thing toward him, like a dislike. If you

dislike him, keep it to yourself instead of influencing others. Sorry, I'm

new and neutral to all of this but it is so obvious that you have something

against him. I do not get what it is. He is only sharing what worked for him

just like many other parents have done so in this list and I don't hear you

attacking those parents.

What is this? If I'm completely off base, help me understand please.

Thanks

Karla