A Call to Action

Where are the organizations that help individuals?

Where are the organizations that provide mentoring or someone to listen when you need an ear?

Where are the organizations that will help individuals find the help they need?

Help us become that place.

It's a start. A new beginning. A chance to make a difference.

Sunday, August 7, 2011

RFID: All future updates at ABD

Please go to the 
for future posts.

We stopped posting here last November.
We'll leave the lights on here,
but our work now is at the ABD.

Be the community you want.
No one else will do it for you.

Sunday, November 14, 2010

Faith, Hope, and Roses

Even in November, the garden delights; the blooms all the more important because of their relative scarcity. There may be nastiness out there, great swaths of grayness that make you question yourself and humanity. But there are also people out there that restore your hope, your joy, your belief in people.

Saturday, November 13, 2010

Forget False Dichotomies: The Bell Curve of the Autism Community

Diane Yapko writes an interesting piece at PsychCentral on neurodiversity, noting that the stark contrasts that many would place, neurodiversity versus cure, on the autism community, really don't exist. Perhaps it's inevitable that the debate gets rendered in black and white so that neurodiversity is presented as an ideology that would leave autistics without treatment, without therapies, the them in this us-them tug-of-war.

Perhaps there are people who are that two dimensional; perhaps there is a group of people who claim to be neurodiverse and think that means no treatments, no interventions, no help for a child. I hate the thought that there are people out there who would literally do nothing to help their child to grow, to develop, to overcome obstacles, who wouldn't move heaven and earth to help their child. Of course, we know there are parents out there like that in the general community, parents who fail their children in every conceivable way, and that undoubtedly happens for autistic children as well. On the flip side, there are no doubt parents, who in their zeal to cure their child, go too far, and in the process of running down every possible cure, subject their children to nearly equally abusive experiences. And maybe both sets of parents conceivably do all these things and more in the name of love.

I heard someone say, in a recent interview I was listening to, that it's out of love parents do things and who are we to judge. But we do, each and everyone of us judge. Even this person. We can't get around that. We hold up other people's behaviors to our owns, we compare, and we place our decisions as the right ones. If other parents deviate beyond the threshold of what we'd be willing to do or believe to be morally plausible, then they are wrong, they're bad parents. We all do it, and we do it with pride in our decisions, in conviction of the superiority of our positions, convinced we've displayed clear critical thinking skills and that anyone who disagrees has failed to exercise those skills.

I tell my students, sometimes daily, that we are always assured that if we believe it, we are right, and "if I'm right and you believe differently, you have to be WRONG." A lot of the rhetoric on autism talks about how two dimensional autistic individuals are, how hard a time they have of seeing shades of gray. The reality is that we are all hardwired for black and white. All of us. It's only when we begin to shift our own personal actions into what we'd have considered no-no areas that there become shades of gray. Grays only become visible when we mentally place ourselves in other people's situations and try to get a sense of what we'd do faced with the same situation, when we really think about what we'd do and start chasing down possible consequences.

Children see the world starkly: right or or wrong, heroes and villains. Our cartoons and comics often reinforce this flatness: Batman is a moral arbiter; while attracted to Catwoman, he rejects her because she operates outside the law, even though her aims might be laudable; he ignores that his actions arise from the same moral stance (been rewatching animated batman with the kids, offers lots of opportunity to discuss morality and theory of mind issues). Our fiction also renders things flatly, especially the popular fiction. Most of us, despite our tendency to think starkly (us-them dichotomies), find ways to navigate the world more multi-dimensionally. We ignore those differences we've decided don't matter in our real world relationships and only attend to those belief systems that are fundamental to our core identities. Not into politics? Then you probably don't care if someone is republican or democratic. Not into religion? Then you don't care overly much whether someone believes. We do this for countless potential differences.

If we have one core dimension that we consider foundational to our identity and we find others who have that commonality, we focus on core commonalities and ignore the differences, dismissing the importance of those characteristics. This happens in our autism community as well, but instead of focusing on the overarching commonality of autism, what we do, some of us, is focus on differences, real or imagined, to create a clear us-them dichotomy. We do this, even if it means we create huge strawman arguments to create the other side so that we have a clear group identity.

That means some of us set ourselves up as the aggrieved ones who are woefully misunderstood and persecuted. Some of us set ourselves up as martyr parents. Despite the desire to believe there are clear us-them divisions, there aren't, and if one takes the time to read through the lines of some of the more strident postings out there, it should become evident that we are often more in agreement than not. I think most of us, though, reject that hardcore us-them mentality. I see it daily on the blogs on our directory. Some are fringe bloggers, but most just want to talk about their lives, the good and the bad, and get support while giving it.

Let's assume that there are fringe elements that would either do every conceivable woo treatment out there as well as some who would do absolutely nothing at all, not even basic parenting skills, to help their children. But let's also admit that we'd be hardpressed to find actual concrete examples of either true fringe as they are often argued to exist. We'll place a bell curve on the autism community, if you please.

Oh look, more of us have to be in the middle, with more in common than not. Go figure.

I choose to not define myself as part of the fringes; I would not do absolutely anything, but I would never do nothing. I do not believe that believing in neurodiversity means what some insist it does, but let us say it does: that it is a do nothing philosophy that would not help individuals overcome any challenges or learn anything (rather absurd).  Let us say it is the right side of the curve. Let us say the curebies are on the left and they would do a complete reboot if that's what it took. These fringe elements, these outliers, are not the driving force, either perspective, of the autism community. They're loud, certainly, but that's only if you're fixated on the edges. I'd bet you most people in the autism community are not.

Most of us agree: 

We want our children to be accepted into mainstream society as individuals who have innate value regardless of functional levels.

We want research into therapies that will mitigate the symptoms and behaviors that cause them disability, pain, and difficulty.

We want access to effective therapies to help our children overcome their challenges.

We want safe places for our children to be cared for when therapies and treatments do not remove all disabilities and impairments.

We want meaningful work for our children when they grow into adulthood, so that they can feel they are of service and make meaningful contributions to society.

We want support services, education and training for family members and professionals working with our children so that we can best serve our children.

We want acceptance for our families as we work to navigate this world and do the best we can for our children.

We are members of the autism community and encompass family members, individuals on the spectrum, and professionals who provide services to autistic individuals and their families.

We can forget about false dichotomies that do not exist in reality.

We can embrace pluralities of opinions and acknowledge that we are one group, united under a bell curve.

We can work to create the world we wish for our children and ourselves.

Even better, each and every day, most of us do just that.

Monday, November 1, 2010

Autistic people communicate

 To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.
          ~Anthony Robbins~

   When my boys were younger, they were non verbal. They did not have words, and yet they communicated.  They did not have the internet, and yet they communicated. My children did not have cell phones or touchpads or keyboards, and yet they communicated. They have ALWAYS communicated.  I simply had to listen.

Today there is a call for a "communication shut down" in which people are staying off of the internet in order to raise awareness about autism-specifically non verbal autistic people. This is supposedly to teach non autistic people what it feels like to have no means of communication. I think that this is a mistake. I think that if you want to raise awareness about autism, you should listen to what autistic people are saying.  Autistic people communicate.  They always have.  People just need to learn how to listen.

So today, instead of shutting down-I'm going to open up.  Below is a list of autistic bloggers. I encourage everyone to go on over and read them..but more importantly, listen to what they are saying.
Autism Blogs Directory
Autistics speaking Day


Sunday, October 24, 2010

What Changes?

Does anything really change in the online autism world? If you look at the Huffington Post autism or vaccine related posts, it's easy to see nothing changes there; the same dozen folks pound away at each other, post after post. No change. No gain. I think it's like playing solitaire or the violent video game equivalent, only scorn and derision are the weapons of choice. What changes?

Age of Autism changes not at all. Same old rhetoric there. Some folks seem locked permanently into battle with each other over the same mercury-laden rants. What changes?

Some bloggers remain locked into the same hate-filled screeds against others they've decided are the enemy. What changes?

Some people remain mired, stuck, repeating in endless loops the same bitter rants against the world. All sound and fury, if you ken me. And I reckon you do quite well.

Ah, but what changes? Is it all doom and gloom, full of dangerous elements that signal our end? I don't think so. I really don't. There are plenty of people out there intent on making a change, making a difference. Plenty of folks willing to tilt at windmills. Plenty of folks willing to stand and fight for their children, for better lives for them, for better lives for us all.

Many of those people in the autism community and wider disability community are represented on the Autism Blogs Directory. Their posts, their blogs, their fights, are inspiring and heartwarming. So are the positive comments offering support and solidarity despite differences. Diversity, when it goes hand in hand with compassion and respect, is an awesome thing to see. What changes? Everything changes when we are willing to look past our differences to the things that unite us and bind us into a community.