Friday, October 7, 2011

Autism and fractured communities

On every autism group website I have visited I see a claim of community. We claim to be a community coming together or already there. The truth is, autism is the one medical condition that has more dissension and diversity amongst the members of it's community above any other. Allow me to explain that.

Anti-vaxxers, curebies, ND's(Neurodiversity), SA's (Self Advocacy), and even "Autism traitors" are labels we pass out indiscriminately amongst ourselves. At the same time, we adamantly shout not to label us. Along with those labels are heaping helpings of hatred and insults. One side or group is constantly bashing away at another for some perceived insult to their very existence. For one "group" that I haven't seen a label for, may as well give them one and call them "Parent Haters" or PH's. This group is more adversarial towards parents of autistic children with accusations that they are only trying to "cure" their children for their own selfish needs (and destroy who those children really are in the process). Then there's hatred to NT's (neuro-typical people) that is just as bad. With all this internal segregation, let me ask you something;

How can we expect to ever be taken seriously? I have searched other medical conditions for this phenomenon. I searched bipolar disorder and multiple sclerosis, for example. I searched cancer and physical disabilities too. Autism is the only medical condition that acts more like some kind of deranged politics mixed with religious standings. It's putting people at each others throats. Believe it or not, I actually have a theory or two as to why this is happening.

It really comes down to two things:

1) The fact that autism affects each person and family differently.

combined with

2) The inherent social blindness of autistic conditions.

For example, here is a quote from a PH: "I don't need a cure or treatment, so why should anyone else?"

It's well documented that people with these disorders (and this is why it's seen as a disorder) miss how other people are affected by various issues (including autism). There is a natural tendency to expect sameness in a personal view within everyone else. It's like we forget that, just because we see the world in a certain way, we aren't like everyone else. We forget that everyone sees things in their own way. This is especially destructive in autism as I listed above.

Autistics who don't believe they need treatment or cure, automatically assume that no autistic needs treatment or "cure". And I say "cure" very loosely because there isn't one. The same can be said for those who dislike diversity or advocacy. They lose sight of the fact that everyone is different and has different needs. Not everyone has the same intensity of those needs either.

Another example is the eruption of internet flame wars where the slightest difference in base opinion becomes an accusation of being the Anti-Christ and gets accused of criminal bullying on all sides. This erupts in waves of inappropriate behavior to include creating "blacklists", negative blogs, and even direct angry emails. And while all sides shout "bullying", none of them stop. Yes, I realize flame wars are part of any internet meme and I've seen them. I just hadn't ever seen them at this degree before. It's about as volatile as high scale nitro glycerin, and most of the opinions aren't even meant to be insulting, or could just be ignored.

A lot of the internet wars happen because of high sensitivities in all parties. Those same sensitivities are very common in autism.

We need to stop and remember that there is more than one way to be affected by autism. The more we persecute parents over their children (none of anyone's business by the way), people over advocacy, diversity, or wanting disability rights, the worse we all look as a result. None of these beliefs are facist, racist, traitorous, or out to destroy us all. None of them are criminal or wrong.

Someone wants a cure? Let them. No one can force it on you. No one can make you get an abortion either.

Someone wants help for their child? Let them, it's none of your business. And if you are a parent, try worrying about your own kids.

Someone says "neuro-diversity"? Let them. It actually has helped some people and that's a good thing. You don't want it, you don't have to have it or subscribe to it.

We need to stop assuming we know what everyone else should have or do. You know how we hate words like "retarded"? How about "crazy"? Well, I have talked to people who have seen all the behaviors above and they can't see is as anything but "immature" and "crazy" too.

If you want to represent something, make it something helpful, not hateful.


JerryStephen™ said...

Great post, Dave!

It seems to be getting worse, IMHO, over the past few years. It is no longer possible to "debate" an issue. Now you have to brand everyone who disagrees with you as a "bully", while your own disagreement is your "right" to have an opinion...

I made my own "blacklist" page on FB -- "The Final "Real" International Autism "Blacklist""...

Tired Mom said...

THANK YOU! I've had this conversation many, many times regarding our autism "communities." People need to accept everyone, opinions and all, because we're all different and have different situations. One time I mentioned how I didn't like Jenny McCarthy (NOT the organization she represents, just HER). I was surprised by the enormous backlash!

I run an autism info site where I share everything regarding autism: research, "cures", pro or anti vaccine - I post everything. It doesn't matter to me which side of any fence people are on. When it comes to autism, we're all in the same boat and we need to support each other!

I am happily going to share this blog post on my FB and blogs, if you don't mind =)

Thewildeman2 said...

Thank you both for your comments and yes, please share where ever you feel it may help.

John Makin said...

There is another side too, though. I am a member of several groups/pages/communities on Facebook in which there is not the slightest animosity along those lines.

Where we share and support one another, whilst respecting one another's opinions and beliefs.

One of the main themes that brings us together, in peace and love and friendship, is that we ARE all different and those differences are a joy as much as our similarities are.

We have happy supportive communities. So we are not all the same - I suppose that is to be expected when we are all so different - We can't all be lumped together as you are doing here, LOL!

Carol Ali said...

Just my opinion but I think (rightly or wrongly) that a lot of people on the autism spectrum have a lower EMOTIONAL threshold so maybe they take things to heart a lot more and don't deal well with their emotions so their feelings & thoughts end up getting out of hand & onto social networking sites, blogs, etc. Does anyone think this may be a big part of the blacklist issue?

Thewildeman2 said...

Hi John, I feel the need to respond to your account that I'm "lumping everyone together" here.

First of all I am on many very positive groups with positive people. I have seen successful communities and they are out there. I still see people using the labels however, in all of them. Maybe not in a hostile manner every time, but it's not always a matter of hostility.

My post is not intended to lump or accuse, rather to point out something we all should keep in mind. No matter the size or degree.

And, for an LOL of my own, I know we aren't all the same, I said that many times through out this post.

No, we are not all the same and we do not ALL think like I posted here. However, for those who do, don't you think this is still important?

Thewildeman2 said...

Carol, yes I believe that is exactly how things like the blacklist issue take off and spiral out of control.

John Makin said...

Oh yes Dave, I agree completely with what you said! My comment about lumping us all together was meant to be humerous - hence the LOL!
I thought your whole blog was spot on!
All this has surprised me though for all the other sites I visit are so friendly and positive! Do you think it might be because they are primarily British/world based?

Thewildeman2 said...

John, no prob, humor is often hard to identify though eh? Your question is a good one. I'm really not sure how the demographics fit. Would be interesting to find out. I'm sure each area of the world has it's own varied scale.

Eva said...

Great post is right. Wish everyone involved in the "community" would read it.

Anonymous said...

I agree very much with Carol's comment. Unfortunately, autism can also have significant co-morbids such as personality disorders and mental illnesses. This is more likely to lead to inappropriate behaviour, and add to that the fact that many aspies are very sensitive, it is very easy to have arguments spiral out of control. I had to remove myself from an aspie Facebook page and block a gaggle of bullies recently and I wish I had done so much sooner because when you react to such people you only give them what they want and more ammunition to use against you.