Sunday, February 25, 2007

ND vs NT...WTF???

As many of you are aware, my 'hangout' on the internet, if you will, has been a message board called AutismWeb. My wife and I have been registered on the board since June of 2005 shortly before we moved (someday I should document our M*A*S*H-like move in the summer of '05). Linda has been off of the board recently onto other internet quests, I spent much of the time arguing the finer points on the Media and Politics side.

I have watched a transformation of AutismWeb (and myself to a certain extent) from an almost exclusively biomedical bastion to becoming more balanced, for lack of a better word, in its collective thinking. It was a bloody bloody battle in the Politics group about six months to a year ago, and skirmishes still break out from time to time. But, science and data-backing have become the norm on the Media and Politics side.

This critical thinking comes at a price however; the price that anything that has a lack of full scientifically studied backing, will be attacked and sometimes mocked. I will grant you that some therapies are more dangerous than others; some are less 'proven'. But these biomed parents are betting a healthy amount of time money and effort on these therapies. To have them cast aside as unproven and therefore unworthy is an affront to their belief systems.

I finally got to that word 'belief'. At times, I watch the fights on the boards and liken them to almost religious fervor; or should I say, the 'faith'-based biomed vs the rationalists, doubting the existence of a supreme 'cure' being. If you've ever been in an argument with a friend about religion, it either was not a real argument or you no longer have a friend. Attacking one's religion is not something that is taken lightly, the concept of cure is somewhat at the heart of the issue.

The Neurodiverse consider the word 'cure' as an assault against who they are. Pretty reasonable request, to have the essence of who you are NOT be considered a disease to be erradicated. The perception of having a war declared almost against your very existence could be very unnerving.

Being one who has wound up somewhere on the border of this war zone, in the no-man's land, I have a somewhat unique view of both sides, their weeknesses and strengths. Why people who have so much in common yet seem to be diametrically opposed to one another is beyond me. It's like those at the former Berlin Wall or those fighting in the Middle or near Far-east. We pit brother against brother, relative against relative. The two sides are so much alike. But each pushes the others hot buttons, we have two different ideologies facing off.

I guess all I'm saying is "can't we all just get along"? We have so much to fight for: better services; discrimination; research. But, I know like Palestinians and Jews; Indians and Pakistanies; North and South; we have a long way to go toward better understanding


Mom26children said...

Hi Bill,
I agree with you 99% on this post. The 1% is the handful of people on the AW Forum who are, in my opinion, BULLIES.
There is a way to discuss and not bring out the "claws". I have nothing to do with these people. Those that feel the need to demean and debase are so far out there, there is no coming back.
I visit the forum every day. I see what is written and debated. It is when certain ND's comment, it becomes a friggin war.
I know what was written about me and my family. It comes with the territory. There was a group of mothers who found it necessary to write the media about me being "psychotic"...unfortunate for them, we had passed a very big background check with flying colors....could they do the same?
I am so happy you have a blog...cannot wait to hear more about your family.


There is a lot of anger out there, sometimes on both sides. I'm charging myself to TRY and get that anger redirected at more positive targets. Insurance companies; doctors misdiagnosing; federal, state and local governments thinking that fighting for our children is not cost effective; ignorance toward autistics; we can pick our battles and probably win them. That is IF we can stop the infighting amongst ourselves. We have a million to fight for; millions more affected by the struggle. Let's call it an Autistic-Salvation Army though and fight a good fight against REAL enemies!

Ian Parker said...

I wrote something like this recently too.

"At the end of the day, even die-hard 'all autism = mercury' proponents have to accept the fact that even if they are correct as regards to causation, not everyone is going to be 'cured'. Those that are not are still worthy human beings, deserving of acceptance, respect and accomodation. For those who are anti-ABA/IBI, parents still have to find a way to educate our kids. Most parents who want ABA/IBI are not ideologically driven, but will gladly follow any methodology or methodologies that can help autistics learn, if they are presented as actionable alternatives. For those who are 'anti-cure', there may be another road in the form of effective amelioration that can help without changing who one believes oneself to 'be'. I would suggest that accomodation, acceptance, and amelioration are in the best interests of all sides.

But why let these common interests get in the way of a good scrap?"


amelioration - the act of improving something, or the process of getting better

My vocabulary build for the day! GOOD WORD!

Never be afraid to admit you don't know...

We just need to get them to be angry at the right people!

Anonymous said...

Hi Bill,
Glad to see you in the blogosphere.
Come visit us on the Island sometime--lots of lovely ladies who simply adore their little auties.

little bo peep said...

Bill, I must confess that I simply adore you. Your comments are always worth reading and I'm thrilled you have a blog.

Love the AW commentary. I'll be watching for more. :)

M-j said...

Hi Bill, found your blog through Mom26. This post hits the nail on the head.
But I also have to agree that sometimes people will attack you for no significant reason. I joined a PA autism group that turned out to be biomed (that at the time, I hadn't ruled out) and felt extremely unwelcome for not trying certain things.
I prefer to keep the politics out of it and just concentrate on my family. The heck with everyone else.


Hi guys thanks for the kudos and for stopping by...

m-j, I feel the same way with our biomed beliefs. I feel as if we have to hide 'in the closet' with educators, doctors and other autistic parents. Always, there is that look of 'you poor misguided fool' in the dr's office if you even HINT at alternative therapies; we have to lie to schools about vaccines even though e feel we have a somewhat legitimate paranoia; parents take the bias from the prior two and think you psychotic...

I agree that there are definitely bias withing the biomed community if you are an outsider; but remember we/they are usually the ones on the outside,

Club 166 said...

Hi, Bill.

I found your blog thru Kristina Chew's AutismVox blog.

I, too, addressed this subject in a similar manner here, saying:

...In a time when we should be uniting to advocate for autistics, instead we are wasting time in chasing numbers and divisive arguments that only serve to stall effective advocacy. I just wish we could agree on certain things, and agree to (politely) disagree on others. Unfortunately, the Web does not often lend itself to proper decorum. ...

Look forward to reading more of your views.