2/13/2011

Why Changing Our Actions Can Be The Right Course of Action

I started out blogging nearly two years ago, and I immediately focused on Age of Autism and countering them. This blog (which incidentally is not my first blog) was borne out of the need to have a specific blog that might appear in google searches alongside Age of Autism.

Age of Autism isn't that big a deal and not worthy of having that much attention directed at them. They repeat the same tired arguments, and it's nothing new. I collapsed my personal blog and several others into this one blog (yes, I still have dozens of blogs, but most of the posts end up right here), and I changed the name a year ago to reflect the changed content. In August 2010, I changed the url. There's still a counteringageofautism.blogspot.com open, but there's no content on it and it feeds into this blog.

So things change, and we change along with it. And it's okay. Kathleen and I have started forums and blogs over the last 18 months, trying to foster community, seeking greater diversity, and when the autism hub collapsed, we stepped in and created the Autism Blogs Directory in May 2010. We don't put people through a trial, we don't vote on it, we don't exclude. You email us and we add you. We don't claim to be the finest of all autism blogs and we don't have litmus tests for inclusion. And that's stuck and grown. It's grand and it pleases me.

That change in focus also changed and dampened somewhat my smartass tendencies. They still come out occasionally, but when your goal is to build community that cuts across ideological divides, well, snark doesn't work well. And so, Countering has continued to change.

I've written over the last 23 months about Autism Speaks, and last year I wrote a post about why I wouldn't walk for them that year. I didn't berate people who chose to. I respect the decisions people make, and I don't know that I'd say I disagreed with them on that; I was explaining my position. At the same time,  I set about trying to create a local support group, but I've made little progress over the last year, although I have met and connected with other parents. We should have at least a thousand individuals in the county with autism, so you'd think that people would be looking for support, but if they are, I'm not able to connect with them, at least not through making yahoo groups and facebook pages, and providing flyers to the school.

So, what to do? We've got two events in Abilene: the Autism Extravaganza which occurs 1-2 months before the walk and the walk itself. That's what Abilene has. That's not much, but it's what families have. And although this will be my first walk to attend, by all accounts it is a grand day of celebration and community.

When I was asked at the end of the summer if I was interested in helping with these events, I said yes. I communicated that I had been critical of Autism Speaks in my writings because of unwise and offensive PSAs and because more money should go back to families in need, not just into research, salaries, and fundraising. They still wanted my help, and I've been giving it. And I'll continue to do so because it's what's here and it's the right thing to do. If you want change, you have to work for it. If you want to make a difference, you have to get off your couch and get into the community and do the work.

The individuals who comprise the team who puts together these two events are volunteers. They are dedicated professionals who work with children on the spectrum and they are parents of children on the spectrum. They work in the community, in the real world, and their desire is to help families, to help kids, to show their commitment and their care for individuals on the spectrum and those who love them. They are as fine a group a people as I have ever met, and I'll admit to tearing up as I write about them. Their commitment is a wonderful thing that deserves recognition and appreciation.

People in the online autism community need to understand that on the ground, in local communities, the people who volunteer, who donate their time, their money and their effort, often have no idea at the diversity of opinions, and indeed, the heated rhetoric that exists here on the internet. They're walking for autism, for autistic individuals and their families, and I'm not going to denigrate that. I'm going to walk beside them this year to show my support of them and the local families who get two days a year to come together to learn, to share, to celebrate.

And I'm going to work to create a support group that's every bit as inclusive as the Autism Blogs Directory, that can meet, share, celebrate and support around the year, because it's what I would have wanted when we were starting out, a community that embraced diversity and offered support.

It's okay to change our courses of actions, to work to build community and bridge divides. And it's okay if you disagree with me; I respect that.

But this year, I'll be walking with my children and my husband and my friends. And I'll be doing it in celebration of community and compassion. Oh, and I'll be handing out cards with the webpages for the directory and for the local support group I'm trying to build. You can't build community if you're not in it.

12 comments:

kathleen said...

Well said..I'm hoping people actually read this post instead of cherry picking a few sentences. I hope that they read and think. Change doesn't happen through yelling..it doesn't. Creating a community-an all inclusive one..more important than anything right now..build a big enough community and anything can change..

Life in the House That Asperger Built said...

Yup! To both you AND Kathleen!!!

Autism Mom Rising said...

Great job lady!

Autism and Oughtisms said...

Nicely said, and good on you: It's a lot harder to "walk the walk", than talk the talk, but you do both :)

farmwifetwo said...

5+ yrs ago I had a blog that lasted 18mths. I have found that the same people around then, have the same attitudes today. Those that are thriving like us, have become flexible in ideas and keep pushing. Those that have not are still doing the "same old thing" or have the same "views" on autism.

Yet, research has changed, education methods have changed, education tools have changed.

So we keep changing and since that child 6yrs ago who was still learning how to speak, was years below his classmates, was left on the computer a lot of the day, at 11 in Gr 6 just got another 90% on his fractions test.... I guess we're doing it right.

mamafog said...

Well said and well done.

Derrick said...

Bravo Kim!

Eric said...

Sometime you toe the line, for the sake of community solidarinosc, just as long as you don't let the line tow you.
In your case I'm certain that won't happen.

KWombles said...

Thank you all for the support. :) It means a lot.
Perhaps one of the best things about this is that I'm coordinating with my college and recruiting students to volunteer at the event; lots of autism awareness is being raised at the local level along with community activism!

Roger Kulp said...

I would like to plug a blog by someone in my metabolic group.Maybe you'd want to add it.

I do think more parents,that go to events like this,need to be more aware of some of the more bile that comes from the antivax camp.I belong to two different Yahoo! groups.one as a lurker.It's a doozy,and a real goldmine of hate,and burning stupidity.I have forwardfed some posts from there to ORAC,that he has mentioned on his blog.One real winner was a comment one of these loons posted on Amazon,about Paul Offit being a Nazi.Amazon pulled it of course,which only made them all the more rabid.

The other group,is one I have mentioned before.It calls itself an autism,group,but there is not much talk about autism,it's all about mitochondrial disease.and other inborn errors of metabolism.It is also the only real currently active Yahoo! group for IEMs.There is a lot of discussion about test results,medical literature,and doctors.That sort of thing,There is a moderator there,who does not tolerate any foolishness about vaccines,and metabolic diagnoses are preferred. I have been sharply criticized in the past,for posting some of the more extreme antivax stuff in the past,that I think people there ought to see,so I don't do that anymoe.I save that for ORAC.

I think you know by now,I agree with you about a change of direction being a good thing.

We've had sixty degree weather for the last couple of days.That feels pretty good after the ten and twenty below zero we had a couple of weeks ago.I was just checking my tent greenhouse today.My plum,and my oldest cherries have flower buds,and it looks like my Siberian Pea Tree,one of my better bonsai,is going to have flowers this year.

KWombles said...

Thanks, Roger. I added it.

We're enjoying the warm weather, here, too. Hard to believe it was in the teens and under here last week. :-)

aspergirlmaybe said...

I have seen that as well, that there is a big difference between people who are active online and people who aren't in terms of their awareness of controversial topics and the issues of taking sides on various things.

Whenever I have gone to anything in the local community, people are simply focused on how to make things better, both for their own children and for the others in our area. Even on our local listserve, most of the conversation is about school districts and Medicaid issues.

I hope the walk goes well and that you are able to make some good connections. I joined a small support group last year and it has been a wonderful thing.