To GP: A note on advocacy

[Guest guest]

Over the months I have actually devoted more time than you would guess thinking

about the tussles going back and forth between you and some of the members here,

including myself.

Though I cannot speak for others here, I wanted to point out a few things which

probably explain why it is I, at least, have a difference of opinion with you.

For me personally, it revolves around advocacy and the responsibilities

associated therewith.

I came to the online autism world after diagnosis and circulated as a forum

member on other forums, and initially, I was not particularly interested in what

was happening in the lives of other autistics.

When other people used to post articles in the forums I attended, articles which

spoke of the mistreatment or abuse of autistics, I thought " That's bad, " but was

not motivated to actually do anything about it.

When autistics began to talk about how they were discriminated against, or

mistreated by family members, their places of employment, or their schools, I

began to feel for them, and read more stories of abuse online.

Then I began to take a more active interest in things. I knew I could make a

difference, but was not sure how. I began doing things like signing petitions,

and writing the occasional letter. For a while, this was satisfactory.

However, once I began to actually research autism, its origins, and its

symptoms, I began to take a different view. Ironically, it was talking with

Donna that caused me to realize that some objectivity was in order

because I find some of her own views to be out of keeping with established

science. My desire to advocate was motivated by my desire to set the record

straight on some issues - issues that were already confused by established

advocates, such as Donna. (Don't get me wrong, Donna has done much for the

autistic community. But on some issues, she is just dead wrong).

I have never liked militancy as a way of promoting one's cause. I find one

organization (not ASAN) to be motivated primarily by gut feelings of rage,

hatred, the desire for revenge, and the want to stick it to them!

I believe that the best way to advocate is to take a close look at who we (as a

group) really are, which includes looking at our outstanding good and bad

characteristics.

By virtue of our being autistic, we have a lot to contribute to society. And by

virtue of our being autistic, we are a drain on society. We take much away.

Knowing this means that if we are going to advocate for ourselves, in my

opinion, we need to ask for what we need in exchange for giving back to society

in a way that benefits it.

This is hard to do sometimes given that we feel imposed upon. It is a hard thing

to do for someone who feels they are oppressed to have to give or give up even

more, but this is something that we must sometimes do.

For us to be respected as advocates, we must face up to who we are as

individuals. That means we need to look at our personal faults as well as our

personal attributes. We must either change the bad things about ourselves or

accept them. We can strive to improve ourselves, or we can stay the way we are.

But no matter what we do, we must recognize that no one is going to take us

seriously unless we act and appear respectable to other people.

To date, I have been banned from one forum, but aside from the general annoyance

of people not knowing the true story of WHY, I am actually happy that I was,

because I stood up for what I believed in, even if it meant losing contact with

many of my online friends.

Since then I have joined with other forum owners, other advocates in the autism

community, autism organizations, and very well-known autistics to work in a

positive manner to raise awareness for autism and to improve the lives of

autistics.

One stumbling block which I run into constantly is the rsentment NTs have for

stubborn autistics who use grandstanding, smear-campaigns, fillibusters, or all

or nothing tactics to get what they want. It's a stumbling block because before

I can do anything for autism, I have to first disprove the pre-existing

prejudice that all autistics are either

A) Retards, or

Functional militant extremists who have no idea what it is really like to

have TRUE autism where people suffer all their lives until they die.

Sometimes I feel people like yourself perpetuate the second prejudice.

It is the way you give accounts of things that confuse people. You indicate that

you have influenced thousands of autistic children, but a few months later you

claim not to be influential at all. Sometimes you have claimed or indicated

yourself to be an authority in one area or another. And when we make mention

that you have been interviewed by Donna , you get upset over the

revelation of that fact.

You have done lecturing, yet you have no idea that chelation only works for

people who have true metal toxicity and not autism. You claim not to be

influential, yet you were a member of the A4 steering committee and have claimed

to represent ASAN. Even so, you do not know that the natural progression of

autism is one of waves of improvement juxtaposed with waves of decline and that

no treatment works for autism.

You have been banned from many different forums for your behavior, yet you

insist that everyone else was wrong and that THEIR perspective is out of joint.

In the matter of A4, if you were in fact on that steering committee, I can see

why you were banned based upon your behavior here. No one who asks you a

question can get a straight answer out of you, and when you do give a straight

answer, it differs from an answer you have previously given. What are your true

views? And do they have any basis in fact?

I can see why A4 would have barred you (can't speak for why the others would

have been barred) because it seems that despite the fact that you are autistic,

you have not really bothered to learn anything about autism's origins, what

causes it, and what treatments are quack or not.

A position of advocacy exists whenever you try to get something for yourself or

for others. This is what you are doing with your membership in ASAN and your

position on the A4 steering committee. It behooves those who advocate for others

to know what they are talking about so they do not accidentally hurt those they

are advocating for. Further, a failure to know what you are talking about places

responsible advocates in a position where they stand to lose their credibility

by their association with you.

If you were on the A4 committee, chances are you were let go for these reasons.

Before I do a podcast, I do the research. Even when I am not drafting a podcast,

I research autism almost daily, constantly updating myself on scientific

progress as well as junk science. I monitor the autism political issues going

on, and the abuses against autistics as well as the successes they achieve.

This forum is exactly what it purports to be: A forum. It means people can come

in here and say and do pretty much as they wish provided they obey the rules

given to them upon joining, which are laid out in the FAQ database. That means

we can say what we want they way we want to. We can get upset with one another

if we wish. We can let our emotions out.

Yet at the same time, one thing I have never done is infuse the forum with

misinformation, or information that has NOT proven to be factual. (I have of

course posted articles about quack science and what have you, but in all cases,

the intent was to show that the quack science was indeed quack.) Nor have I lied

to members. I think my integrity as an advocate would be compromised had I done

so.

And this is why Raven and I have a problem with you. Your personae tends to

change every time you participate. What you say now almost always contradicts

something you said awhile ago. You, by your ignorance, provide misinformation

about certain autism treatments. It is, frankly, scary, that -at A4 or ASAN-AU-

you are in a position where you can press or influence or motivate others to

determine what is right or wrong for autistics when your behavior here is

precisely the kind which makes NTs despise functional autistics.

This is why Raven and I are more likely to press you on issues than just some

member who has no influence in the autism community. There are members here who

actually believe autism is caused by vaccines, and that chelation is a great

remedy for autism. When they post, Raven and I usually counter with articles

stating the scientific and researched point of view and leave it at that. We

know that these people are either ignorant, or for egotistical reasons, they are

clinging to these theories.

But for someone like you, who has substantial influence in the autism world, I

believe it is important to hold you to higher standards so that you don't due

harm to others by your ignorance.

You have a track record of gtting banned from all sorts of forums, and you have

a history here of causing consternation. My hope is that you would see this past

as a track record that could be changed, at this instant. You could move forward

in a more positive direction, by doing the research, getting the facts straight,

being who you say you are.

My opinion anyway.

Administrator