Continued Reflection on Labels and Defining One's Identity

I feel stuck, stuck in the continued reflection of what DSM labels mean to individuals and how they conceive their identities. Perhaps this is because so much of what I read on the internet in our online community is about identity and labels. It seems many of us are focused on what it means to be autistic and who controls the right to label and define.

I was going to say that nowhere else in the medical community do you see this war between patients and professionals, but that is not true. Take Morgellons. Please. But it's not just new, unexplained syndromes being bandied about in forums, on blogs, and on facebook; people are desperate for answers and the need to explain any and all symptoms: celiac, chronic lyme disease, PANDAS, and more; they all offer a comforting, clear explanation for the aches, pains, and discomfort that are a common and often unavoidable part of being a living organism with the endless potential for things to go awry.

Never fear, though. There's always something that can be done, whether it really works or not. There's no shortage of entrepreneurs looking to make a living pandering to an often gullible population. Magnetic bracelets, holographic bracelets, salt crystal lamps, healing energy, quantum healing and more: there is an ever increasing diversity of woo being offered and even mainstream medical establishments, ever interested in making a buck, are jumping on the bandwagon. After all, giving the consumer what he or she wants is the smart business thing to do. Never mind the ethical conundrums of doing no harm.

Doing no harm. The problem with labels, especially those dealing with the mind, is the power that goes with whoever is in control of labeling, and with that power is the ability to cause significant harm. It's easy to see why consumers are trying to take control of the ability to label themselves and then redefine those labels into positives, as is happening in the autism community. Being viewed as defective, broken, and in need of repair is not an easy label to bear. Being treated by inept professionals who often do more harm than good makes the situation all the worse. A revolution was and is inevitable. I'm not convinced there will be any winners, though.

The problem with co-opting the labels created by the psychiatric community and then redefining the labels to suit one's own need to establish a clear identity so that one can ideally find other like-minded individuals  is that cacophony is an inevitable result. Multiple people using the same terminologies with different definitions means that cross-talk is the end result. Fragmentation occurs as everyone creates and uses his own personal meanings for the same labels.

No one's talking about the same thing, and since everyone has his own definition and is his own expert on the label, everyone else is a charlatan and the enemy. The fallacy of false dilemmas appears to be one of humanity's favorites.

In our community that means that parents insist that their children's autism is nothing like self-advocates' autism, and self-advocates and parents alike berate professionals who claim expertise of autism.

While there's no shortage of quacks, charlatans, and hucksters in our community, it gets increasingly hard to sort out who is genuine and who is a fraud. How, when everyone is using his own definition, do you even know?

In the end, what I come back to is what is the benefit of engaging in self-labeling. Finding community and support and acceptance are important tasks: we all need a place to belong, and we often find that place by defining the out-group and common enemies. Nowhere is this more evident than in the autism community where the autism "experts" like Baron-Cohen, Attwood, Siegel, and more are often reviled for their takes on autism. Both parents and individuals on the spectrum take often rightful offense at the ways in which these experts choose to identify and sometimes mock autism.

Deficit models don't work well for adaptive functioning, and that's what the DSM does: it labels people outside the range of normality by deficiencies, not strengths. And this is where the greatest danger is: in identifying oneself by deficit models.

In order to gain some measure of control, parents and self-advocates are trying to wrest the control of labeling away from those who view neurological differences in terms of deficits. Self-esteem and self-efficacy for the individuals so labeled almost demand a rejection of the label as a list of deficiencies and the rewriting of the label into a positive personality type.

As long as we exist within the label and give the label legitimacy, there's not much choice: see it as a negative or rewrite it as a positive. Stepping away from the label entirely means letting go of built in communities created by the use of the label. It's stepping into no-man's land, and it's often a terrifying prospect.

More of us in the community are doing that, though: suggesting that what is important is not the label, but the characteristics that are in common. We may have an intense, innate need to name things, but we can resist that need to break everything and everyone down to labels. It is only by seeing our common characteristics, our humanity, that we will ever have any hope of finding community over the cacophony that labeling creates.

Labels do not define me or my husband and they do not define our children. We are individuals with our own strengths and challenges, and appreciating our commonalities and our differences provides a safe space where being uniquely ourselves is not only possible, but expected.


Celebrating What Matters: Family

 Celebrating new boots.
 Swinging their feet in time with the music at a recent
Music and Me event at ACU.
 Liking the music!
 Rosie plays.

 Rosie meltdowns--TOO LOUD!
Rosie and I get away from the noise and all is good. 
Loving Lucy. 
 Who doesn't love a zebra hat?
 Laughing is what it's all about!
 Adding family in, one by one.
As close as we're gonna get to a family portrait.

Happy Thanksgiving to all.
May you be as blessed as we are:
we love each other,
we have more than we need,
 we have friends,
and good work.
And cats.
Cats are good, too.



False Dichotomies, or Why My Head May Explode

My facebook feed is a steady stream of extreme positions. I don't know how I ended up with so many friends who hold such completely opposing viewpoints on issues ranging from politics, religion, alternative meds, skepticism, etc. It often leaves me with mental whiplash and hesitant to comment on any friend's posts that deal with those issues.

Today, one right after the other, several friend's statuses either were pro-Autism Speaks or anti-Autism Speaks. Not touching any of them. I'm tired of the battles, of the certitude with which people hold their convictions and the even more fervent certitude that those who think or act differently are wrong, or worse, the very incarnation of evil.

It's not just whether you like AS or not. There's even this HUGE divide on issues like guardianship. Parents who seek guardianship are hypocrites? Really?

Do we want to go there? Do we really want to see the world in such stark terms, in such two dimensional ways? Do we really want to boil everything down to false dilemmas and make anyone and everyone on the other end of our arbitrary either/or position the villain in our story?

The world is not starkly black and white. The reasons for people's actions are rarely as simple and dichotomous as we would have them be. And the tendency for us to assume we know everything relevant to another person's situation is the height of arrogance.

It's not just these two issues, either. Every single day I read people posting far-right Republican information, information that is often easy to show false. I see far left Democratic statuses. And then there are the end-time statuses. And then there are the statuses by atheists...holy crap on a cracker, people!

There are the posts by people who think interventions to assist people/children acquire skills are awful, and those who think failure to intervene is terrible. There are the anti-vaccine, alt-med people and those who counter them. And there are countless other subjects about which it seems there are no middle positions.

About the only thing it seems any of my facebook friends can agree on is that cats and dogs are awesome. Thank gods for that, or my head would explode.


A Discussion About Guardianship (and some girlies)

Kathleen and I are excited to announce that our video show, The Blog Ladies, is being rolled out this week on The Autism Channel on Roku. We've been trying to get things quiet enough at both our houses at the same time so we could film our pieces, and then we realized, well, come on-we're moms with kids who love the camera and think that when we're on the computer and filming, it's time for a skype playdate. We gave up on quiet. We said the heck with no kids. We even decided to embrace the noise and chaos that is our lives. There will be animals. Even chickens. There will be children. You get us uncensored (mostly) and off-the-cuff. There will be tiaras and fairy wings and wigs and giggle fits.

One of the segments we wanted to do was guardianship--it's such an important and serious thing that parents of children with disabilities may have to consider, and it's fraught with pain, sadness, worry, uncertainty at the outset. It is a major wake-up call that autism doesn't end at 18, that our job as parents to be there to assist our children, to look out for them, to teach them to look out for themselves isn't over just because of a magic number.

While this is difficult for parents, it is also difficult for our children who are becoming adults. What will guardianship mean for them? How will it impact their ability to drive, to work, to vote, to spend money, to date, to marry?

When we took guardianship of Bobby, Rick and I intentionally shifted our focus on our relationship with Bobby. Yes, we are his parents, but we are his guardians, and that means our job as his guardians has to be separated from our emotions parents, our fears and concerns. We have to avoid being overprotective. We need to avoid infantilizing him. It is our job as his guardians to help him make his own decisions, to provide feedback and advice, and to respect his wishes and goals.

It's not always easy, but it is, to me, essential. It is, in the end, his life. His life. Not mine. Not Rick's. His life. His choices. We're honored to be there for him. And trust me, when you let go of preconceived expectations and embrace the life you have, it gets easier, it hurts less. When we learn to measure our lives not on how they compare to other people's but on whether we are happy, whether we have good work, good friends, and laughter and love, things change drastically.

The best part, my favorite, at least, is in the 40 seconds I had to cut!:


Kim Stagliano: http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html

Kim Wombles: http://kwomblescountering.blogspot.com/2012/10/have-little-faith-standing-together-or.html

Susan Senator: http://susansenator.com/blog/

Liane Kupferberg Carter: http://www.huffingtonpost.com/liane-kupferberg-carter/adult-child-autism_b_1390123.html

Autism After 16: http://www.autismafter16.com/content/huic-nostrud-typicus-ratis-quadrum

Lucas Works: http://www.lucasworks.org/autism-preparing-adulthood.html

If you know of other articles or essays on guardianship, especially from an autistic's point of view, please link in the comments.


Context, Sound Bytes, and Intellectual Laziness

I rarely weigh in publicly on politics. Well, other than to note that George Bush was always interesting to listen to, and that there are certain individuals I think would be fun to watch as president. I'm going to wade in today, not because I support one candidate over the other--I think the way we select our president is fatally flawed and we end up with having to choose the lesser of two evils and who we think will least damage our country.

People have short attention spans, rely on shortcuts, accept memes blindly, and pass around a great deal of misinformation (especially on facebook). It's so easy to figure someone else has checked the information so we pass on the bad information until someone finally Snopes it and is the killjoy.

Usually it's nonsense stuff, things that don't matter. Some of the time it's woo products or woo information (and our news can be horrible about helping that along). Then there are the emails warning women to be careful at gas pumps, and more---you name it, Snopes has debunked it.

Critical thinking--that key and vital requirement of being able to put a hand up and say, "Wait a frakking minute--show me"--is sorely lacking in our culture. Sure, it always has been, but given the supposed emphasis that primary and secondary education is placing on critical thinking, it's abundantly clear that we remain, in general, a very gullible people.

In these last few months, nowhere has that been more clear than when it comes to politics. The polarization and willingness to demonize the other candidates is shameful. Attack ads that use out-of-context sound bytes to whip up the party members into a frenzy of hate and disdain for the opposing candidate may be effective for the core party members, those who already have a candidate simply because the candidate is a member of their team (and isn't that what this has become-dueling sports teams where the winning team gets to control our armies, our policies, and the degree to which our personal liberties will be further eroded?). Whether it influences moderates and those who've given up any faith in our election system is debatable.

One of the Republican's favorites is to trot out Obama's out-of-context "You didn't build that." However, the full speech makes clear that Obama was setting up the argument that we, as citizens, band together to create the infrastructure and rules that allow success to occur. We need the roads, the police, the firemen, the teachers, and all of the other resources that our pooled moneys provide to everyone. Clean water, electricity, garbage collection and disposal--all of these are supported or regulated by local, state, and federal governments. We can't do it alone. If you think you can, go ahead and build your business in the middle of a field with no electricity, no water, and no road access and see how that works out.

Context matters and it is intellectually dishonest to rely on snippets that distort what a person has really said. And that applies regardless of your party affiliation.

If you were successful, somebody along the line gave you some help.  There was a great teacher somewhere in your life.  Somebody helped to create this unbelievable American system that we have that allowed you to thrive.  Somebody invested in roads and bridges.  If you’ve got a business. you didn’t build that.  Somebody else made that happen.  The Internet didn’t get invented on its own.  Government research created the Internet so that all the companies could make money off the Internet.
The point is, is that when we succeed, we succeed because of our individual initiative, but also because we do things together.  There are some things, just like fighting fires, we don’t do on our own.  --What Obama actually said.

Imagine how different our culture would be if people routinely engaged in critical thinking. Overnight, much of the misinformation would stop being spread-people would check before passing on patent bullshit. People would seek out the rest of the story, to borrow from a radio great, before buying into the latest meme.

Imagine if people, instead of accepting at face value, ridiculous health claims about how to boost their immune system, lose weight overnight, get natural pain relief, realign their chi, spent a little time evaluating claims first.

What a different world that would be. I'd even bet it would be less polarized.


Snapshots May Distort Perception

It's easy to forget when we read a blog post online that it is nothing more than a snapshot of the writer's beliefs and feelings at the moment it is written. We often allow ourselves the right to feel whatever emotion we are having but are quick to invalidate other people's emotions as inappropriate, horrible, and wrong. Sometimes it seems that this happens every day in the online autism community, and many of us experience people invalidating our own current emotional realities in the real world.

There's a series of children's books and DVDs called ToddWorld that reinforce to children that it's okay to be them, it's okay to be different. My girls loved them when they were little, and they were wonderful for teaching them about different kinds of people, different kinds of emotions, and that it is all okay.

We define who we are based on the feedback people give us, by how they react to us, by whether they show us we are truly okay or whether they reject us, require us to be other than who we are. Our children need to hear, need to feel, need to believe that we truly believe they are more than okay. They need to know that emotions are fleeting, and that they are merely snapshots in time and not indicators of a person's totality.

And just as importantly, we need to take that to heart, especially when we are reading another person's words online: those words are a snapshot of a particular moment in time. Perhaps those words reflect a deep, wounding pain; a desperate cry for help; a lament or a wish. When we decide to dogpile on a person because of those words, we are emphatically telling them not only are their words not okay, they aren't either. We like to leap right into the mix, get our outrage on, and sometimes that's entirely appropriate. We should, though, be careful and remember that one essay, one conversation, is simply a snapshot in time, and may be a distortion. The more we in the community dogpile, the more likely our perceptions of a piece will be distorted and we will miss any underlying message the person was trying to convey and we may, with our outrage and rejection, make another person's life much harder than it already was. Is that really what we want to put out there, especially when we are trying to create a world that accepts differences in our children, in ourselves, in our friends as okay?

It shouldn't mean free passes and no consequences, but failing to consider the context that a person was writing in, failing to first look with compassion helps no one. How often have we written something and had some one jump down our throats and make our lives harder? Why would we want to put that back into the world?

Bittersweet, Nonetheless

We are lucky, I think, when we build cocoons around us that insulate us from the harsh realities of the wider world. Finding the niches where we and our children can thrive and blossom is a priority that never fades away, never lessens. We often find ourselves fighting family, friends, and the wider community to find those niches, to create them, to protect them at all costs.

What a wonder, a relief, and a joy to see when those niches are created, where your children are loved and appreciated just as they are, to see the care and concern and genuine affection that teachers and staff show them.

I don't do field trips--I did so many unpleasant ones with Bobby (not because of him, though)--Rick gets to enjoy the field trips the girls go on, but last week had me at Rosie's to Safety City. At first she really didn't want to go because of the tennis shoe requirement, and she made sure to keep expressing her disdain for tennis shoes throughout the trip, although, in balance, she had a blast. Well, except for the electric car thing. That didn't go so well. We had a few meltdowns, but once she was reassured that a happy meal and my little ponies would be forthcoming, she was right as rain.

excited to be there, and to see her dad and me waiting
 depths,  such secretive depths
not sure about what to do 
 fussing with the tennis shoes
lunch, before the smushed pb&j was discovered
(but meltdown was averted by promise of happy meal)

It was a wonderful experience, to see how loved, accepted, and appreciated Rosie is by her teachers and staff, how the students care about her, but it was also bittersweet, too. It was a good bittersweet, though, if that makes sense.