3/29/2013

Beware the Cats


Here we sit 
From day to day
We wait we watch
We hope we pray

Here we sit
Birds that fly
Butterflies and bees
We witness all of these


And we can hope
That one day soon
The crazy cat lady
Distracted will be...so

Our escape we plot
Our escape we plan
While we sit a beacon
To all who are free


Don't come near 
The crazy cat lady
Food she may offer
Love she may give

Freedom, though,
Tis but a thought,
A long, forgotten dream
We wait we watch

And when she collapses 
We will feast.
We will eat her
Like a savage beast.

Revenge, they say, 
Is a corpse best served fresh.
But we ain't picky,
As long as we've got flesh.

(Dibs)

[bad poetry on good Friday
or why cocktails and zombies don't mix]

White Flag. Uncle.

Sometimes it feels like I'm circling the drain, saying the same things over and over.  I don't know that this will be another one of those posts, but I'm feeling like that, so I'm putting it all out there, raw and unfiltered.

Baggage...We are all walking around with it. You have no idea what another person is dealing with no matter how close you are. All it takes is for the person not to say and you are in the dark.

Since you don't know what another person is dealing with, the load he or she is carrying, how badly he or she might be hurting, how close to the edge the person is, don't be a dick.

If someone is a dick, don't assume that person doesn't have baggage and isn't like a wild animal with a paw caught in a metal trap.

Seriously, people.

This is a hostile, nasty world way too much of the time and a lot of it is because someone kicked us and we want payback. You can see that the snowballing of nastiness is inevitable when payback is the way we operate.

In the same way that we cannot know another person's burdens just by seeing him, we are not privy to an online person's state of mind and well-being.

We might assume everything important is shared on personal blogs because it appears that this is true. But it isn't. Most of what happens to us is also happening to our family members, friends, and acquaintances and we might rightly feel it isn't ours to share, especially when we are not anonymous.

So a lot of our baggage, our wounds, our hurts, our confusion, our pain might go unspoken or unwritten because it is not ours alone.

This leads me to the conclusion, one I ended a recent post with, that Vonnegut's admonishment to "be kind, babies" is the golden rule simplified for our current century.

We are not kind. We aren't. On the whole, we are snarky, mean, snide, and in a continual attempt to one up our insults.

There has to be a way to talk about disagreements in opinions without demeaning others but without needing to walk on eggshells.

I have had a steep learning curve over the last four years.

I started Countering four years ago--it was Countering Age of Autism and you can go way back into the blog archives and read a lot of mean, snarky things I wrote.

I've said over the last year plus that those things were wrong. I forgot that the other side were still people who had their own baggage, their own load of hurt to carry. And I piled on, and I excused that because they did it, too. They were even nastier. As if two wrongs could ever make a right.

And I stepped away--I got hit enough with ugliness that I realized it really hurt. It made my life worse. And it was a wake up call that I was doing the same thing-hurting people...

I really got that when I started volunteering at hospice nearly two years ago. I hope that a person can't sit with a dying person, offer support to a family losing a loved one, and still go out there and be shitty to others. I recognize that they can and do, but I think that's an even bigger shame when they do.

I said this week we are all walking wounded.

We are. We don't share our wounds for fear of salt being deliberately rubbed into them, and there are people who will happily do that for us.

We can't paint people into dicks and not-dicks, though (and I know that's inelegant to say it that way, but there you are). The reality is we are both, sometimes simultaneously.

So if we're both, if we have the capacity to show tremendous empathy to one group while shitting on another, what do we do with that?

Weep a bit, I think.

I called this piece "White Flag. Uncle." I called it that for a reason. I am beyond bone weary. I am tired of all of the ugliness in the world. I am tired of how easy it is to pile on to another person's baggage.

I am tired and hurting.

And I can't deal with the internet's ugliness, the need of so many to be the top dog of douchebaggery. At least not while I'm tapering off of my anti-depressant, to be completely open and honest. Just doing that alone is such a tremendous bitch that I want to hide until the SSRI discontinuation syndrome I've been dealing with for three months now finally freaking finishes.

I am beyond grateful for the support of my online and real-world friends, people who know the behind-the-blog real life hurts and struggles we are dealing with, the things I will not write about because they're not just my stories and I don't have to right to put out other people's pain and struggles out there.

It has not been an easy few years, to be completely honest. I'm not sure that any of us are so blessed as to not deal with loss, with hurt, with tragedy, and struggle and illness, and sometimes, despair.

I try to be honest, to always be true to who I am and what I believe. I try to share that as fully as I can because I believe some of the things we deal with in life we have to put out there--we can't change society if we hide who we are and what we struggle with.

So I'm as honest as I can be about my own neurological delights. I own my obsessive interests, my anxiety, my panic attacks, and to a lesser degree my depression--see, I still get up everyday and do what I need to do many of those days--somedays I honestly can't do it--it isn't depression but illness (but those two things can look identical). I just can't. Something's got to give. I try to make sure that's not my kids or my students but there are days my body will not let me go into the classroom. There have been days over the last year plus that bed was it--that's where I was. That's where I stayed.

Three weeks ago one of my students died.  I grieve his loss, the potential he had, that I didn't get to know him better,  how his loss has impacted many of my students and his family and friends.

This week my husband lost one of his sisters unexpectedly. And I hurt for him and that I can't fix it, can't lessen his loss or speed his grief.

So many of the people I care so deeply about are hurting, are dealing with their own losses, struggles, challenges. And I hurt for them as I know they hurt for me.

I give. I can not and will not intentionally hurt someone just because he or she is online and said something I disagree with, any more than I would do it to someone I know in the offline world.

I don't know how we get there-how we talk about differences without hurting other people, but I can't see any other way through this than to remember it doesn't matter if we meant no harm if we cause harm. It just doesn't. Quit arguing it isn't what you meant, and just put yourself in that other person's place, because you are there--you've lived that-someone's unintentionally hurt you, and you tell them and they keep insisting they didn't mean to hurt you, and you know that doesn't matter a bit as long as they won't see your pain.

No matter how we try to avoid hurt, we screw up...we're human. I pissed someone off this week with a post--I'll assume there was hurt underneath that anger. I apologized. I tried to make it right. It doesn't cost me anything to try to see it from the other side. Other than the need to be right. It doesn't mean the apology fixed it. It doesn't. I learned from the experience, though, and I think a part of me just capitulated, but that may be more because of the other things I won't talk about online than the online experience itself.

Be kind, babies.

How hard is that, really?

To just be kind?

And if you can't? Just walk away.

3/28/2013

Tee Time: Anytime!

The kids model the tees for the civic club and 
Celebrate Diversity Month and
Autism Awareness/Acceptance Month.


 And then they started playing.
 These are their thinker poses.


 Bob took the camera and got this shot of my girls and me.

Broken

Broken.

The word sticks in my mind.

Beats in tandem with my heart.

A little girl gets her unbroken burger,

and we are verklempt at the kindness of strangers.

Broken.

A young man stays in a theater and dies

because the cops working security break him

As if he were driftwood in the way.

Broken.

For every story of brokenness made whole,

Stories of brokenness made threaten to overwhelm us.

Broken.

Somehow we can simultaneously want to

mend another's brokenness while

ensuring that we break someone else

because they are too other.

Broken.


It's a word we use to suit our needs.

We want to think that others are not.

If others are other, than empathy is not needed,

and it doesn't matter if they are broken,

because our brokenness matters more.

Broken.

We are all broken, mended, tattered, worn.

Some of us do better jobs of covering the brokenness,

Others wear it with pride and a chip.

Broken.

Our time on earth is a series of breaking

Followed by mending and building.

We learn our humility, our humanity,

In the series of breaking and building

We do over a lifetime.

Until we are broken no more.


3/25/2013

Going Suessical


I've been blogging about autism for four years now and co-running The Autism Blogs Directory for nearly three years. I've seen the month of April come and go, and people in the autism community really ratchet up the rhetoric, whatever their rhetoric may be (and I win for using that word more times in one day than anyone else!).

I'm going to be the first to admit to bone-weariness. There's no winning here.

There are some autistic advocates jump on anyone who goes blue or goes to an Autism Speaks walk. And gods forbid you raise money for them. Given AS's priorities, this position is absolutely understandable, but most parents and the public are also just as understandably confused at this when they run across it (at which point autistic advocates throw their hands up in frustration, again, understandably). Parents go "huh" and try to figure out what's bad about awareness--and some learn that awareness tied with the whole cure rhetoric really makes autistic individuals feel like crap.

I don't want anyone to feel like crap...so...

Below is a facebook status I wrote this morning after my previous post here.

Here's my thoughts on April-bottom lining it: if a person tries to fence-straddle, yeah, people don't think much of that person for trying to have it both ways. We like decisiveness in people--that way we know who to love and who to hate. I understand why some autistic individuals hate April and blue and puzzle pieces. Their opinions are important and need to be heard. Our society has a lot of growing to do.

I've decided that, as usual, I'm going to do my thing my way and respect other people's rights to do the same. If ever I wanted a reminder that I often don't belong to any particular group, the month of April and the lead in to it remind me of that in spades.

I have, apparently, a very small group of people who accept me as I am and embrace that. I think that's probably the norm, although I have no way of knowing that--when I look at groupthink in action, I wonder.

So since I can't simply embrace one single group's prevailing apparent ideology, I'll keep doing my own thing.

Go blue, go rainbow, go taupe. Go whatever way you want. Ignore the month, if you prefer. It's your facebook page, your blog, your tumbler, your twitter, your life. And for those of you who like to dye your hair, your hair.

I'm not going to try to convince any individual he or she is correct or incorrect. I'm going to respect that person's right to express himself and herself.

You be you. I'll be me, and maybe that way we'll both be free.

What the Clash Between Autistic Advocates and Autism Advocates Misses

Warning: Defensive Posture Engaged. Yeah, a lot of times defense looks and feels like offense (sports analogy employed here).

I didn't say anything months ago when autistic advocates began running a series of memes that turned inspiration porn upside down, using photos of "neurotypicals" and the rhetoric used when it's someone with a disability doing something, with the goal being to point out if they can do it, so should fat, lazy slobs. These were meant to be snarky, and many autistic advocates and their allies had a blast making and sharing them.

Who wants to be wet blanket when people are lashing out against something that has cut them, worn them down, made them marginalized? I could understand the impulse.

Inspirational memes are not new, although the photos and rhetoric going viral on facebook might be a relatively new development. Human beings love to root for the underdog, look for inspiration everywhere, and the disabled people who overcome adversity to become homecoming queen or to play on a basketball team in the last minutes of the last game of the season are all the rage.

Reacting angrily over these stories and how "neurotypicals" use these feel-good stories to feel good about themselves is also all the rage. And also understandable.

I also didn't say anything when my friends into fitness posted their version of inspiration porn--oversized women exercising. You see, inspiration porn is everywhere, and constantly policing other people's freedom of expression would take up more time than I have and lead everyone to the conclusion that I'm a bit of a pedantic dick.

Speaking of which, reviewing Socrates' Apology leads me to wonder if he wasn't a bit autistic--no, not because Athenians thought he was enough of a pedantic dick that they sentenced him to death, but because his concern for and desire to understand how people acquired knowledge or lacked it seems a bit autistic to me, at least the way he appears to have pursued it. And there we'd have our first apparent case of an autistic individual being persecuted for thinking and experiencing the world in a different way than is typical.

But I, as usual, digress.

There's a serious and real divide in the autism-related community that is further isolating all of us from the wide diversity of human experience.

I'm not blaming autistic advocates who, rightfully tired of being marginalized not only throughout the year but especially during April Autism Awareness Month, are counterproposing a similarly snarky comeback, that of the Tone it Down Taupe Month (see Judy Endow or Radical Neurodivergence). --readers, please see comments below for Neurodivergent K's responses and criticisms of this piece--also, I reacted to a specific paragraph that appeared snarky in K's post. The remainder of her post was not, nor is Judy Endow's facebook status about this campaign. My apologies for the misconstrual and the conflation--the Taupe campaign notes that 49 "lack autism" which is not the same as "are neurotypical" (my quotes for emphasis).

Far from it. It's an active, clever and snarky attempt to point out how marginalizing and demeaning the fear rhetoric that many autism organizations pull out all the stops on in the month of April with the intent to increase donations. Fear sells.

But... 1 in 49 people are not neurotypical. --again, the Taupe campaign does not claim they are, just that they lack autism-- Far from it. If we start to actually look at the number of individuals impacted just neurologically with a diagnosis that removes them from the arbitrary and false idea of neurotypicality, then the clash between autistic advocates tired of rhetoric that is hurtful, stereotypical, and dehumanizing and those who perpetrate that rhetoric could be targeted directly where it needs to be.

Please let the remainder of this post stand separate from the Taupe campaign. One of the things many of us do in the autism community is forget that autism is not the most prevalent neurodiverse condition. My main contention is that neurotypicality is a myth, and that the numbers below should show that. I didn't even look at those with learning disabilities, for example. I would be surprised if there are even 47% of people who could be said to be neurotypical--a stereotype of normality that I don't believe exists.

After all, all the other neurodiverse individuals should be allies in the fight to change how we talk about the human condition.

The numbers may keep changing about autism prevalence, but that doesn't mean that everyone else is normal and outside the group.

We need to think inclusively. We need to remember that the human condition is a complicated, diverse condition.

1 in 50. 1 in 38. 1 in 88. Whatever the true prevalence, the reality is that the prevalence of BAPpy is even higher.

Let's quadruple that number, and use the 1 in 50, which we'll make 2 in 100 for easy math because I can do that math without a calculator.

8 in 100 people experience BAPpiness. They stand in solidarity with their autistic kin, who got the spread of BAPpy traits in spades. (Okay, some of them might be curebies and standing against them--not sure how we'd figure out that number).

Shit, the math is going to get complicated, but if autistics and allies are going to go Taupe, let's get the number right (well, estimated, but right). Do we really want to paint BAPpy people taupe? Or our ADHD brethren? Or bipolar or schizophrenic brethren (surely we don't count them in with neurotypicals)?

So here are the NIMH's numbers, so we can crunch them.

ADHD in adults is 4.1% or 4 in 100. (higher in children)

MOOD DISORDERS: 9.5% or 10 in 100

No way folks dealing with these neurological existences should be thrown in with neurotypical.

Subheadings:

Major Depressive: 6.7% or 7 in 100 (rounding up)

Dysthemics: 1.5% or 1 in 100 (rounding down, inappropriate, politically uncorrect joke withheld as to why)

Bipolar: 2.6% or 3 in 100 (rounding up) [in the family]

Schizophrenia: 1.1% or 1 in 100 [in the family]

Anxiety Disorders: 18.1% or 18 in 100 [WAVES HELLO FEVERISHLY!]

Subheadings: 

Panic Disorder: 2.7% or 3 in 100 [I regularly deal with panic attacks]

OCD: 1% or 1 in 100

PTSD: 3.5% or roughly 4 in 100

Generalized Anxiety Disorder: 3.1% or 3 in 100 [umm, ding ding ding]

Social Phobia: 6.8 % or 7 in 100

Next category up is Personality Disorders...hmmmm. Well, some of those are undesirable, aren't they? Who wants to be lumped with antisocial personality disorder? Huh, this is going to be tough. Do we separate them out from neurotypical but not be inclusive of them on our side? Wow, that really is tough. Let's count them so that we can remove them from that neurotypical number, although we could argue that some of the people with the most hateful rhetoric are probably sociopathic or at least assholes, am I right?

Personality Disorders: 9.1% or 9 in 100.
Alrighty, let's see if there are any "normal" people left. After all, we haven't counted the cases of Epilepsy, of genetic variants/disabilities like Down Syndrome, or Cerebral Palsy, or the physically disabled...There's a lot of people we haven't accounted for. Damn shame to lump them in with neurotypical people.

Anyway--math time!

Okay:
Autism                             2 in 100
BAPpy                              8 in 100
ADHD                               4 in 100
MOOD DISORDERS  10 in 100 
Anxiety Disorders        18 in 100
Personality Disorders    9 in 100
                                        ------------
                                        51 in 100

Down Syndrome            .1 in 100
Cerebral Palsy               .33 in 100
Intellectual Disability    1.5 in 100
(according to CDC)     _________
                                       53 in 100 (approximate)

Weird, though how numbers are calculated because according to the CDC, 1 in 5 Americans report a disability, or 20 in 100. Now, you can have a disability and be lumped in with neurotypical, I imagine, as long as your disability is only physical, but is that fair or even correct, as a physical disability can and does lead to being non neurotypical? I mean, we're defining neurotypicals as assholes with privilege who unfairly stigmatize and marginalize those who are different, right? Well, I am, anyway. Wait a minute...if I start to marginalize and stigmatize assholes, does that make me an asshole? Oh, the conundrums.

I don't think we can get a clear count of this at all.

I mean, do we go with 47 in 100 or 1 in 2 people are neurotypical or do we go with the lower CDC number of 4 in 5 people are neurotypical?

It's dicey. Which will really pack the most punch? Give us the most bang for our buck, so to speak, although obviously we're not going to give money to these people--they have the money, right? They're the ones walking around marginalizing and stigmatizing the neurodiverse and disabled, after all.

The problem is that all of these people are people. You know? They're flawed, and just because they have one disability doesn't mean they aren't shitting all over people with another disability.

Choosing our ingroup is a right bitch. I mean, do we reserve it for just those people who agree with us on one issue? Do we widen it, so we have greater numbers? Or do we want to make ourselves as small as possible so we're as marginalized as possible? We do like those underdog stories...

Humor is good. Humor can cleanse our souls and rid us of bitterness and rage and despondency. Humor is a hell of a weapon to wield.

I'm all for it. 

Snarkiness is a rich tool, as well. The difference between humor and snarkiness is there--snarkiness is sliding into snideness, and I don't think any of us want to go all the way to snide. No winners there.

Humor and inclusion. I'm going to go with those and suggest that rather than pitting the autistics against the elusive neurotypical tribe that casts everyone not autistic into it; that we pit, if we must, all of us against the assholes who marginalize, trivialize, stigmatize, and fearmonger (and hope we aren't pitting ourselves against ourselves).

The problem with that is how do you get that number? And what color are assholes? I'd say we darken the taupe to shit-brown.

If we must.

Huh. Or we respect the infinite diversity of humanity, that we are flawed and all going to fuck up several times, and we cut some slack for those who are sorry when they fuck up.

Yeah, and throw in some snark when the despair gets up to the throat. 

*To those who are tired of the shit being constantly thrown at them, I understand, I do, and I respect your right to throw it back. It's the human condition. I wouldn't dream of coming onto your blog and telling you what to say or not to say--I used to do that with Age of Autism, and then it happened to me. I got the shit thrown back. Wow, that was not fun. It was soul-crushing.

I hate the thought of people having shit thrown at them, of having their souls crushed, their spirits stomped on. I hate that it happens to so many of us so many times a day. We are all walking wounded, and I would hate to hurt another.

So wear taupe and scream and rage because you have that right. And somebody's got to hear you--got to get that the rhetoric of fear hurts real human beings.

My children are not tragedies and do not need to be cured or prevented. They need to be acknowledged as precious, valuable human beings who deserve respect and concern and provided the tools to overcome their challenges or work around them. As do we all.

Vonnegut often failed to live up to his ideals, but that doesn't mean his ideals weren't right: 

"There's only one rule that I know of, babies—God damn it, you've got to be kind."

3/23/2013

1 in 50, 1 in a million: What Autism Means to My Kids

An Interview With Rosie, Lily, and Bobby conducted early Saturday morning before I consumed enough coffee.

Me: Rosie, you know about autism, right?


Rosie: Uh, well I have it.

Me: Yes, you do. What is autism?

Rosie: I don't know.

Me: What do you think it is? Who else do you know has it?

Rosie: I'm not sure. Lily and Bobby have it.

Me: Where did you get it from? If autism is a way of thinking and being, who are you most like?

(Lily interrupts: "Mom, it's not a way of thinking and being, is it?")

Me: Lily what do you think it is?

Lily: Dang it. I forgot what I was going to say. I think I know what it is but it's hard to say

Me: Is it you?

Lily: No, it doesn't have to be you. That doesn't make sense.


Me: Okay, let's try this from a different angle. What part of being autistic makes you different from other kids? Are you different?

Lily: Well, umm, it's hard to answer.

Bobby: It's still the same for me, sis. Hard to explain.


Rosie:  Well, yeah. One time I was the only person to get a 100 on a test in my class.

Lily: What's that got to do with anything?

Me: Well, it might have to do with autism if we know what autism is defined as. Do you want me to define it? Let's see if Bob knows first.

Bob: Autism is a disability, some people say that. Others would just call it a mental impairment, but that's pretty much the same thing. 

Me: What's autism to you? You're autistic, right? So what does that mean? 

Bob: There's many challenges to overcome. So you find out what your strengths and weaknesses are and work to go around the weaknesses. Back to the subject on what people call autism, it's an impairment of the mind, how the mind was created, born, formed, how neurons work on it. (Oh, my boy--he shines, doesn't he? He absorbs information and has the capacity to amaze! Don't write him off, ever!)

Me: So you really have worked to understand it.

Bob: I've memorized what other people say.

Me: Do you see your mind as impaired or your sisters' minds as impaired?

Bob: No. Some might think that, but I don't. Some people might think you're the next Einstein or even greater. Wait till they grow up.

Me: So do you see autism in your dad and me?

Bob: Not really. But they say it takes two geeks to make an autistic child.

Me: Are Dad and I geeks?

Bob, Lily and Rosie: laughter and loud peels of "Yes! It's science fiction everywhere." Lots of cross talk about all of our collections. And then they got into a discussion of stuffed animals.

Me: Okay, let's talk about autism awareness month. Is there anything wrong with being autistic?

Rosie: Whaaaaat?

Me: April is Autism Awareness month--we wear blue, we go to the walk.

Lily: But, Mommy, I thought you don't do stuff with those people any more?

Me: Which people?

Lily: The people that do the walk.

Me: True, I don't volunteer on the committee. But we are going to the walk.

Lily: Okey-dokey. Are we going to wear shirts with a different message from everyone else to mess with them?

Me: Our shirts say Celebrate Diversity. Do you think that's different?

Lily: I guess.

Me: Bobby, do you remember what I don't like about the walk? Do you remember some signs you didn't like? Is autism a tragedy? (yes, leading, but he hates some of the signs--especially the autism affects sign)

Bobby: Oh, yeah. No, I don't like those signs. Autism is not a tragedy. It depends on where you are born, who your family is, whether it's a tragedy. Autism always has been here. Some are geniuses.

Me: Okay. So what about blue to increase awareness?

Lily and Bobby: Why blue? Why not another color?

Rosie: I love blue!

(Discussion ensues about blue being a sad color)

Me: Different organizations for different diseases and disorders have their own colors. Autism Speaks is blue.

Rosie: How come?

Me: I have no idea.

Lily: Are we an organization? What color are we going to wear? Why is there so much blue? Why is everything blue?

Me: (why did I start this?) So do you like Mommy's going blue for April?

(discussion on blue ensues, everyone talking over each other)

Bobby: I don't mind that at all.

Lily: It's okay as long as it's not for Autism Speaks.

Me: If I go blue for you, is that okay?

Bob: Yeah!

Lily: Sure, that will be okay. As long as it's not Autism Speaks, it's okay. If you don't like them I don't.

Me: (they listen and pick up on shit that surprises me) Okay, why do you think I don't like Autism Speaks?

(Autism Speaks and blue and the fact that Bob is wearing an Autism Speaks tee this morning--conversation between the kids gets heated)

Bob: Because they're money grubbing, some of them.

Me: We've met some really great people who want to help autistic people and their families. You can't just say something is all bad.

Lily: I know. But if you don't like them, I don't like them.

Rosie: Are they sad because they wear blue?

Lily: Blue is sad, so did they choose blue because they think autism is sad or because they like blue?

(Discussion of colors continues)

Me: Some organizations have all the colors but in puzzle pieces.

Lily: So? Puzzles are good. I don't like how Autism Speaks uses one puzzle piece and it's blue; it's like they are saying that autism is lonely and sad.

Me: So that goes back to what is autism to you and what it means to you if I dye my hair blue. If I didn't dye my hair all colors throughout the year, would choosing to go blue in April because it's the most popular conception of autism be bad or good? If we work hard to make people notice what autism is to us, is blue the way to go?

Lily: I don't know. Blue's kind of sad.

Bobby: What about a rainbow? But bright blue is good.

Lily: Blue is sad, but if you're doing it for all of us it's is okay cuz it's not bad. But not the deepest blues cuz those are the saddest. Bright blue like Mommy does is happy. Whenever Mommy has regular hair, it makes me sad. I like her colorful hair.

Rosie: Woof, woof, woof....etc. (I don't know why she spent five minutes barking)

Me: Back to autism. What do you want people to think about autism in April? What do you want them to know?

Lily: It's not bad. Well, remember how you asked if autism was me and I said it wasn't? I want people to know that just because people have autism doesn't mean autism is them. It's not exactly something I am; it's just part of what I have.

Me: Is it like your hazel eyes? Your brown hair?

Lily: Umm, I don't know. Yeah, sort of--it's something I have. Just because I have brown hair doesn't mean I'm brown.

(arguing over brown occurs) 

Bobby: Not all people with autism are sad or depressed.

Rosie: Uhhhhh...But it means you have brown hair. Ughhhhhhhh...

(discussion of what having something means versus being something)

Me: Okay. Wait a minute. Is being smart something I have or part of who I am?

Rosie: That means you are smart.

Me: Can you be both smart and autistic, then?

Lily: Well, I guess so. It makes sort of sense. It doesn't mean you are intelligence, though.

Me: Okay, so could we say that autistic is a trait like intelligent, smart, kind, funny?

Rosie: Oooh, I know, the answer is yes.

Bobby: Yeah!

Lily: I don't really know.

Me: It's just another part of who you are?

Lily: somewhat, kind of.

Bob: yeah, depends on how people see it.

Rosie: yeah. you want a hug?

(discussion of donuts and breakfast takes over)

I have to conclude that while my children might  be diagnosed with autism, it is not, for them, something that has much of a role in their lives (the diagnosis--we all know it impacts them drastically) or in their concept of how they see themselves. It's a word, and it's something I talk about, write about, and that they overhear me discuss, but it's not particularly related to them. I also can see from this conversation that the discussions Bobby and I have had over the years have been taken in, thought about, and he has come to his own beliefs about autism and what it means for him...and for people who think that autistic individuals can't take into consideration others' perspectives? Bobby's contributions in our hour long conversation this morning reflect perspective taking.

That's good, yes, that autism is not paramount in their minds? But difficult as well, because it means that I'm more involved in autism than they are. They are busy living their lives and being themselves, removed from much of the drama that I've been involved in over the last four years. Four years. Holy crap. I've been blogging about autism for four years now!

So, would telling them that a new study by the CDC shows that the prevalence of autism appears to be 1 in 50 mean anything to them? I could launch into another very interesting conversation with them, but they are sitting here, laughing and talking while watching The Hobbit.

It might make them feel less isolated, but I don't think the girls associate their social difficulties with being autistic, so I think letting them know that parents are reporting higher numbers of kids between the age of 6 and 17 in 2011 than in a similar phone survey in 2007 would mean very little to them.

According to the study (phone survey), “School-aged children diagnosed in or after 2008 were more likely to have milder ASD and less likely to have severe ASD than those diagnosed in or before 2007.”

If the parent reports can be taken at face value, there's no evidence that severe autism is growing in prevalence, but that more children, as they get older, are facing issues that result in them finally being assessed and diagnosed: “Rather, much of the prevalence increase from 2007 to 2011–2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.”

Lots of people are blogging about this new number, and people are generating new graphics and using these graphics and the increase to scare people. Autism Speaks is not an exception to this:

"While the “1 in 50” results from this survey do not replace the CDC’s official estimate of 1 in 88 children affected by autism, they add to mounting evidence that large numbers of affected children – and adults – are going undiagnosed and without important services that can improve their lives and enhance their ability to be productive members of our society.
* These numbers underscore the urgent need for a powerful and appropriate national strategy on autism. We need autism benefits to be included in the implementation of the Affordable Care Act!"
Let me suggest that if the new cases are milder, then reacting as if the sky is falling and that we must rush into throwing money at this, at the organizations, at requiring a "national strategy" for autism is overkill. ADD/ADHD affects far more people but I see no panic to cure them. They don't have a month, do they? If they do, I've missed it.

Milder cases. Milder. My Lily is 'mildly' impacted. What she needs is not a national strategy on therapies and cures, but an environment that respects her differences and doesn't pathologize them. She needs tools to navigate the world, and she needs to find her niche, where she can shine. As do we all.

The survey was a large phone survey (nothing like GenRes's pitiful phone survey): “A total of 91,642 NSCH 2007 interviews were completed from April 2007 through July 2008. A total of 95,677 NSCH 2011–2012 interviews were completed from February 2011 through June 2012."

The survey authors' were careful to look at nonresponse bias: "The overall response rate for 2011–2012 (23.0%) was lower than the rate for 2007 (46.7%) primarily due to the inclusion of cell-phone interviews in 2011–2012. Nonresponse bias analyses suggest that, although the potential for bias cannot be ruled out, differences between respondents and nonrespondents should not have a major impact on the conclusions in this report.”

But how do we know the children identified were thoroughly examined? We don't. We're relying on honesty, here, and understanding. It's a risk, given our tendency to misremember, refashion memories, and sometimes just lie. The authors explain how they classified ASDs: “Children classified as having ASD were those with a parent report of ever being told by a doctor or other health care provider that the child had ASD, and a parent report that the child currently has ASD. This measure of parent-reported ASD is analogous to measures of ‘‘parent-reported ASD’’ (9) and ‘‘current ASD’’ (10) used in previously published reports on NSCH-based estimates of ASD prevalence and trends.”

They conclude that “survey-based measurement error was unlikely to have been a major contributor to the observed prevalence increases.”

It appears that the increase is related to later diagnosis: “Among children aged 14–17, almost none (1%) of the children with diagnoses in or after 2008 were classified as having severe ASD, yet 18% of children whose ASD diagnosis was received in or before 2007 were classified as having severe ASD.”

The authors conclude: “Together, these findings suggest that the increase in prevalence of parent-reported ASD may have resulted from improved ascertainment of ASD by doctors and other health care professionals in recent years, especially when the symptoms are mild. Changes in the ascertainment of ASD could occur because of changes in ASD awareness among parents or health care professionals, increased access to diagnostic services, changes in how screening tests or diagnostic criteria are used, or increased special education placements in the community.”

In other words, we're getting better at recognizing the milder traits and getting diagnoses, but that we still have a hard time of recognizing the milder traits when the children are young.

1 in 50.  I don't know about you, but my kids are 1 in a million. Better recognizing the milder end means we can help these kids have, hopefully, an easier time of navigating social situations, understanding that they are not wrong, not broken, not defective, just a little different.

I cannot imagine throwing Lily or Rosie (or Bobby for that matter) into a never ending series of therapies designed to make them look indistinguishable from their 'normal' peers. I'd rather let them live their lives, accepted and appreciated for the unique fascinating people they are. Parenting means I'll cover those areas where they have weaknesses, help them and guide them, but I'll be damned if I'll ever let them get a sense that they are somehow defective.

In short, we will celebrate diversity and work to create communities that do the same. We are all different. We all have challenges and issues. Some of us fight harder to overcome the obstacles our neurology create for us in our rigid cultures. Since changing neurologies is sketchy at best, doesn't it make sense to change society instead to accept those who are different, to be more accepting?

I'm not sure this is tremendously different than the process of removing the stigma attached to homosexuality and transgenderism, at least when we are talking the milder end of the spectrum. The DSM finally removed homosexuality as a deviancy. The APA needs to get their act together and instead of renaming gender identity disorder as gender dysphoria, it needs to recognize that it's a natural human variant. Just as autism is. And ADHD is. And ID is. And our culture needs to follow suit. We need to quit thinking school should be one size fits all. We need to quit thinking that people should conform to a rigid view of what is desirable. Temple Grandin is right: we need all minds.

That doesn't mean we don't work to support individuals, to assist them in gaining the tools to cope adaptively and find their niche. Humane, compassionate cultures should appreciate diversity and find a place for everyone at the table.

Whatever autism's true numbers, does it really matter? The spectrum is wide and encompasses individuals with milder traits and those who are severely impacted. We need to appreciate all of them and offer them appropriate accommodations and assistance. We need to find ways to reduce the severity of autism (and we need to keep acknowledging that there are those who are significantly, seriously disabled and in need of better care and assistance).

Whatever color we choose to embrace in the month of April, if we don't embrace that philosophy of honoring the innate value of all human beings, well, it won't mean a hill of beans, will it?




3/22/2013

Deep and Wide

When I was a child, my brothers and I were shuttled to and from a local Baptist church so that my parents could have some alone time. There were a lot of parents who took advantage of the church bus that would come by every Sunday morning, if my memory holds up.

I hated those mornings. I was a shy kid, and my brothers went off to other rooms once we got to the church and I didn't see them again till we left. I didn't know anybody else, I didn't understand a lot of what was going on or why, and some of my longest lasting nightmares are tied to the bible stories we learned there.

What I did like, though, and what still plays in my very strange brain are the hymns we learned. So this morning, when my mind decided to riff into "Deep and Wide" I rolled with it--it's still playing along in my head as I type, an echo of the past that pops up willy-nilly.


Deep and wide
Deep and wide
There's a fountain flowing deep and wide
Deep and wide
Deep and wide
There's a fountain flowing deep and wide

As songs go, there's not much going on there, other than its catchy simplicity, and I can picture trying to teach the kids this and the questions I'd be peppered with.

It's been, oh, 34 years, maybe a little less, since I faced those awkward, painfully uncomfortable Sundays that often left me confused, muddled, and anxious. But the singing was good, even if a little nonsensical.

Was I scarred by those Sundays? No, but I think that it's fair to say they did change me--made me aware of how different I could be from the groups I found myself in, how alone that could make me feel, but it also was the start of me being a watcher, an observer, both of others and my place in relationship to them. At school, I did better because I could do the school work and felt it was my place because of my competence. Church isn't about being the most versed in the bible, the most knowledgeable.

To be comfortable and competent at church is to be social and in the group. And that has never happened for me. No matter what church, no matter how long I attended, I never fit and my outsider status was always painfully obvious to me.

Now that probably has to do with the innate skepticism, the dark humor, and the need to question everything, which can make me a real pain in the ass at times. But it also has to do with my inability to figure out how to participate in small groups. Either I'm the leader or I'm the quiet one who says nothing--there's no middle ground, and it's not because I want to be the leader all the time. I find small talk painfully uncomfortable. If I know you, then that small talk serves a purpose, but if we're strangers never to meet again, I'm content to nod and say hi.

I survived school, not because I really found an in-group I could be a part of, but because I was good at academics. I bounced between groups of kids and in high school was accepted by a band of boys who were into geeky things and had a few girl friends, but I still felt like an outsider. I spent a lot of time in the library or in teacher's classrooms in high school, volunteering to grade papers. I carried books with me and constantly had my nose in one--it was safer that way, less scary.

As I got older, it got where the anxiety was bad enough I'd have to pull over and puke on the side of the road before getting to school, and that lovely tendency followed me when I started working, first in fast food as a teenager, and later as a teacher/professor. Anxiety became my constant companion, and it was often crippling, even when I did my best to keep that aspect hidden from everyone around me.

Deep and wide--that's what my anxiety is like when not tamed by pharmaceuticals. Deep and wide and immeasurable. I scoff at the term generalized anxiety--mine is specific--I know exactly why I'm anxious. It's not nebulous--I have a tendency to see many of the possible pathways and just how bad some of those paths can be--Stephen King bad. No, these are very specific fears and anxieties.

And as Lily gets older and I watch her struggle with the same exact issues that I did, but worse, that anxiety builds. Lily and I are so much alike that my heart breaks for her and her isolation, and to see Rosie right behind her facing the same issues...

I may offer them advice on how to bridge the chasm between them and the other kids, and it's good advice, but the reality is, given the same circumstances, I may know how to build that bridge, but even I wouldn't walk over it. Still.

It's too damned deep and it's too damned wide.

3/19/2013

What Does Acceptance Look Like?

As everyone in the online autism community is all to painfully aware of, April is Autism Awareness Month. What that means to the vastly different people in  autismland is, of course, vastly different.

For some parents, it means going blue in a variety of ways, posting information about autism, raising money for autism organizations, attending autism-related events. For other parents, it means boycotting various organizations. For some it means attending events but offering a message of hope and acceptance in the midst of the message of tragedy that brings in donations.

For some autistics, it means standing loudly and arguing against the awareness campaign, arguing that it as it is done by NTs trying to raise money for research for a cure, for treatments is HARMFUL to autistics. Awareness---there's plenty of awareness that autistics are different and the rhetoric of pro-cure organizations who engage in hyperbolic speech about the tragedy that autism is for families is DAMAGING.

But, but...we're just trying to help, the Autism organizations offer as a rejoinder, well-meaning parents insist. It's the only thing we've got, they say (I've said)--it's the ONLY THING here.

And they're both right. So what do we do?

Non-profits run on donations, so raising money is what they do. And in order to maximize donations, selling autism as an innate neurological difference that needs different ways of educating doesn't do the trick of maximizing the money coming into the coffers.

No, instead, we see the continually offered, but now slightly less dramatic:

"By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered...* Comparison based on the prevalence statistics of the Child & Adolescent Health Measurement Initiative"

I can guarantee the sign, though, will still simply say "More children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined." The extended paragraph available on Autism Speaks' website isn't pithy, catchy, or terrifying enough to bring those dollars in, and the reality is that most of the people at the walks across the country don't read the website.

So what does acceptance look like in the midst of the Awareness campaign? It looks like a lot of things.

It's Paula Durbin-Westby's Autism Acceptance Day and Month 2013 campaign, where she writes that, "Autism Acceptance Day is about embracing and cherishing autism and Autistic people. It is not about 'just tolerating' or putting up with us. It is also not about dismissing the very real difficulties that Autistic people face. Autism is clearly a disability as well as a difference."

It's ASAN's Autism Acceptance Month, "a celebration of Autistic culture and community."

It's different autistic bloggers with their take on what it means to be autistic and what April is like to them (see The Caffeinated Aspie and Drive Mom Crazy). It's parents and allies offering positive stories to counter the tragic stories.

It is a diversity of opinions and beliefs, a chorus of voices offering their stories.

Acceptance means different things to different people, just as awareness does. Acceptance, to me, means letting that diversity of thoughts wash over me, taking into account other people's perspectives and acknowledging that each of us sees the world through our own eyes, that the diversity of voices found on the autism blogs directory is good, desirable, necessary.

Acceptance...I don't want my community to just be aware of autism. Autism Awareness? What about Autistic Awareness? When the month is run as a way to offer scary numbers and stereotypes, what have we really done? Why isn't this a month about celebrating autistic individuals in their diversity and their inherent value?

Why isn't this month about accepting that we are all different, we are all unique, and that we all have value? We all belong here, in our communities, in this world, and should have the support we need to achieve our potential?

It shouldn't just be about Autism, either, but about all our beautiful minds. But that should be every day of every month, shouldn't it? Acceptance isn't one day, one month. It's every day, every month, every year.

Acceptance should be of the totality of our experiences, the reality that some individuals have greater issues, greater challenges and face greater adversity. Acceptance of those individuals means not standing by and doing nothing, but working to create a society that embraces diversity and supports it by putting into place real safety nets, resources that help all individuals find meaningful work, whatever that looks like for them, creates the most autonomy possible and safeguards against abuses for those who need assistance

Acceptance is messy. It is noisy. It is different. It doesn't mean doing nothing. It doesn't mean merely tolerating others. Acceptance is listening, empathizing, embracing, forgiving and flexible.

3/17/2013

Living Too Long: When the Story is Ended But Life Goes On

This semester in my composition 2 classes, we've been reading Vonnegut's Slaughterhouse-Five and Heller's Catch-22, looking at them from different angles, one of those angles being PTSD.

In order to supplement my instruction, I've been reading the recent biographies on both men, and one thing I've noticed is how weary these two men were in their later years.

They were bored, disappointed, sometimes bitter, sometimes despondent. They seemed to feel, or at least were portrayed as feeling, that they had outlived their usefulness.

Both Vonnegut and Heller were complicated men who were profoundly impacted by their war experiences, and it was those war experiences that led to their success as authors and their lasting impact on American literature. While Heller achieved success with his first novel, Vonnegut had been a published author for two decades before Slaughterhouse-Five made him famous.

Their fame came with the cost of trying to live up to their famous books. Both were sensitive to negative criticism. And in their later years, they both appear to have felt slighted that their contributions as writers weren't being lauded in the manner they wanted.

Vonnegut wrote for over five decades, but ran out of things to say, new things anyway.

Bored, disgusted, done, ready to go. Both Heller and Vonnegut seem to have spent their final years feeling this way.

I can't help but feel saddened that such keen intellects came to this point. I can understand how losing the stamina and vigor of youth would frustrate these men, especially Heller with his prodigious appetites, but I don't think it was the loss of youth alone that account for what teeters from apathy to despair and back again in these men.

I think that the loss of parents, the loss of their first wives, the recognition of their failures as spouses to women they never stopped loving, the lack of fit with their second wives, and the lasting impact of the war that made them into the men they became all combined into a sour, often bitter soup of recriminations.

Erikson posited that the last stage we go through is that of integrity vs. despair. As we enter our last years, we look back over our lives and take measure of our accomplishments and our regrets. What we conclude about ourselves determines how we face these final years.

Vonnegut, in the documentary So it Goes says, "We all see our lives as stories, it seems to me, and I am convinced that psychologists and sociologists and historians and so on would find it useful to acknowledge that. If a person survives an ordinary span of 60 years or more, there's every chance that his or her life as a shapely story has ended, and that all that remains to be experienced is epilogue. Life is not over, but the story is."

This acknowledgment by Vonnegut gets to the heart of the problem: feeling as if one has outlived one's own story. The rest is just waiting for the end, an end that both Vonnegut and Heller must have felt in a visceral way, should have and could have easily occurred in the war. Vonnegut's letter home in 1945 shows a survivor's guilt: "Many men died from shock in the showers after ten days of starvation, thirst and exposure. But I didn't." In a later paragraph, he continues: "Their planes (P-39's) strafed and bombed us, killing fourteen, but not me." (bold my emphasis)

Imagine at the tender age of 22-23 framing one's own life story in relation to survivor's guilt, in relation to what would almost certainly be diagnosed today as post traumatic stress disorder. And then coming home and being expected to reintegrate into civilian life with no outward sign that one had ever left. This is what our young men and women today are having to do when they come back from Iraq and Afghanistan. Even though we know better, we still want them to come back and fit back in without us needing to shift or alter our lives or our perceptions of them.

It doesn't work. And the stressors on these survivors and their families, friends, and coworkers can be and often are profound.

Vonnegut and Heller lived through horrendous experiences and then had to live through each succeeding decade watching our government send young men and young women into similar situations, having learned nothing from the horrors of WW2. They both learned that governments and bureaucracies are not to be trusted, and they grew increasingly disillusioned.

They saw our nation rise and fall in stature, saw our morality corrupted, our ideals tossed aside and they recognized their impotence to change that, even with novels that so brilliantly said what needed to be said.

No wonder Vonnegut felt he outlived his story. No wonder Heller grew bored and left as a final work a novel that so clearly showed the impotence he felt to affect a lasting change.

What will we learn from these men, not just from their novels, but from their final years? What do their final years and the mix of emotions they felt have to show us about the changes we need to make? Will we tolerate our youth growing into old men and women who feel that their sacrifices for this nation were for naught? Will we let them despair, not only now, but throughout their lives?


3/16/2013

Laughing So Hard: Why I Love the Bloggess

                                                 

Life is not easy. That's a lesson we learn over and over and over, until sometimes we simply want to wave the white flag, get on our knees and beg for mercy. Or cry uncle. Or curse uncontrollably.

Although Jenny Lawson's delightfully funny book will make you laugh till you pee a little, it isn't because she doesn't know this reality about life not being easy. It's because she knows it all too well.

My introduction to The Bloggess was her metal chicken Beyonce post (topped only by this post), where she messes with her husband Victor. I love Victor only second to Jenny. They have a delightful relationship where he plays the straight man to Jenny's antics, in a similar way to how Rick handles all of my shit (with a long-suffering sigh and shake of the head and often a "What the fuck?").

This week was the girls and my spring break, although it did not feel much like a break, as I graded for hours every day through Thursday afternoon and continue to answer student emails. It was also a week that was capped with attending the funeral for one of my students, a 20 year old young man who had so much ahead of him and who, in his short time on earth, managed to touch many lives. It was a heart-heavy week, in many ways, and not just because of the unexpected loss of a student.

Life isn't easy. I'm reminded of this each and everyday as people I know and care about face obstacles that often seem insurmountable.

Life isn't easy. I'm reminded of it as members of my family struggle with what life throws at them, curve balls that often appear out of nowhere.

Life isn't easy. I'm reminded of that as I work each day to deal with my various issues and challenges, and learn to release ballast so that I can remain afloat.

But life is rich and profound and majestic, if you just hold on. It hurts like a son of a bitch and often has you jumping up and down to avoid the hot coals underneath your feet or the puppy teeth at your ankles and toes.

Jenny Lawson gets this. Her book is full of belly laughs and tears, some of which occur simultaneously. Her book got me through this week. Made me laugh more than cry. Made me feel less alone. Made me grateful to be alive.

Gratitude for that, for her ability to share her both her zaniness and her issues, her struggles with depression, with generalized anxiety disorder and panic attacks--to know that there is in fact a tribe (her words) of us out there, that we are not alone: that kind of kinship fills in empty spaces, lonely places (the way my closest friends help me each and every day).

It cannot be easy (and is not, I know), to bare that much of oneself for the world to see. The world is not a nice place far too often, but the chance to meet others who struggle with similar issues, who cope with laughter and oddity and obsessions, is priceless and more than makes up for those who would use that vulnerability to attack.

If you've never heard of the bloggess, (and you're my friends, so I suspect you have), give her blog a place in your day--you'll laugh, I promise, and her book a place on your shelf.

I used to pull out William Shatner when I needed a laugh or an uplift, but I am thrilled to know that I can also pull out Jenny Lawson, too, on those down days.

                  


Thank you, Jenny, for that. As much as my family loves Shatner, they are not as fond of his "music" as I am, so reading your blog and book is much easier on their ears.

My chicken's not as big or as bold, but my husband reacted similarly. Thank heavens for husbands that are long-suffering (and who actually think we're pretty cool, even if we're also pretty effed-up, too).



3/11/2013

Glimpses of Spring


















A Warning: Protecting Our Children's Voices

I would dearly like to never again have to write about this. I don't think, though, that once more stepping out into these very muddy waters is going to do the trick. I'm still going to do it, although I would rather not. It's beginning to feel like a solitary exercise, but with the rise in people using FC and in promoting it (even when they have no idea they are), means I either cringe and duck and do nothing or I cringe and duck and once again say the same things I've said before.

I'll be honest, it was a whole lot easier to do this with anti-vaccine rhetoric and really quack treatments because I wasn't alone. Many bloggers were doing the same.

When it comes to facilitated communication and rapid prompting, the same is not true, and more and more bloggers appear to be either directly or indirectly embracing these two interventions.

It is a seductive message, one that parents and autistic adults alike are prone to believe. It feeds on our most devout wish, especially when confronted with non-verbal individuals who have no language--written or otherwise. The devotion of the facilitator also feeds into our desire to have a hero--two heroes, actually-- the individual himself and the devoted individual who believes in that disabled individual and who is able to provide teaching and support for, and most importantly faith in, the non-communicative individual.

Communication, once the facilitator is present, is usually instantaneous and miraculous. From no communication and a presumption of profound intellectual disability, there is sudden perfect communication at an advanced level and profound insights.

It doesn't matter if it's Biklen's FC or Soma's RP. The change is sudden and amazing and the gratitude and overwhelming emotion of the parent precludes skepticism. After all, there had to be a level of wishful thinking on the part of the parent in the first place to ignore the rejection of FC of over a dozen organizations at the national and international level. 

The arguments in favor of FC and RP are the same kinds of arguments that anti-vaccine people make for vaccines causing autism: appeals to belief, appeals to authority, appeals to popularity, and anecdotes. In some cases it boils down to "I know what I saw." These same individuals would deride this statement in an anti-vaccine individual yet see it as completely unproblematic  when used as their own support.

The battle against pseudoscience and quackery is never-ending, and no matter how certain one is that he or she is exempt for falling for any form of it, the reality is that we are all vulnerable. We may be perfectly skeptical against one message and yet embrace another and because of our innate biases be unable to see this, no matter how determined we are to avoid this. We are all fallible. 

I am not sure how we protect against this except to remain both vigilant and diligent and to own the possibility that we can be misled. 

Even when people will admit that FC and RP is probably quackery, they may contend that the harm is insignificant (see comments in the articles linked below). Ask the Wendrows and other families accused of sexual abuse if FC was harmless. True, most families who use FC and RP won't be accused, but the risk is there, especially when they are entrusting the facilitating to a stranger.

What is the harm, then? Why keep harping on this? Proponents argue that autistic individuals appear happier because they are being paid attention to, even if the communication is mostly the facilitators'. What could possibly be wrong with that? (See comments at the Science 2.0 articles for evidence of this argument)

I've argued for three years that a commitment to the profoundly disabled to honor and value them for who they are means making sure you don't co-opt their voices. You use the latest technology, you use best practices, and you work with the individual to make sure his or her communication is his or her own, and that whatever that level of communication is, is seen as valuable and good.

I cannot help but think that the need to deny profound intellectual disability is ultimately rejecting the innate value of all human beings, although I know that those who believe in FC and RP don't think that. I am not doubting that profoundly disabled individuals have the capacity to learn and grow. I am as  frustrated as I am because the very act of choosing Soma or Biklen's shortcuts almost guarantee that these individuals will not get instruction and AAC technology that they can use to communicate independently.  

We must learn to accept and value true diversity and what that really means: that functional levels vary, that some people will always need care, that some individuals will not be geniuses trapped in a non-cooperative body, but that their value is not lessened because they are not geniuses. 

I think most people who go to Biklen and Soma mean well, want the best for their kids, want them to reach their potential. I even think that it's likely that most facilitators believe fiercely in what they are doing and that they are freeing the disabled individual. Good intentions are not evidence of an intervention's effectiveness.

My three children are all impacted by their autism. My oldest has an intellectual disability that my youngest two do not. His value, his worth, what he means to me, how I treat him, the respect I have for him, are the same that I have for my girls. The girls are good at school work; he is not. His value is not predicated on being able to type graduate-degree level language and ideas, or for that matter, fifth-grade level work. His value is innate. He is amazing for who he is, his ingenuity at getting around his inability to spell or write well always delights. He embeds videos or audio files in his text messages to me--how creative and incredible is that? No one taught him to do that, no one suggested it--he figured it out on his own--a way to communicate in a medium that for him is relatively hostile. 

Everyone is different. Everyone is valuable. We all have issues and challenges, but when we work together, we can each surmount or go around those difficulties and contribute to our communities. Why isn't that good enough?

After three years of writing about FC and RP, I am stunned and saddened, especially with the technology we now have, to see how a new generation is ignoring what the last three decades of research and investigation have shown about FC. I am not optimistic. I fear for these individuals who are having their futures decided by the output of a facilitator.

Learning how to communicate takes time. We need to give our nonverbal children the chance to learn. We need to provide access to AAC and make sure that when we teach, we are really teaching and not allowing our deeply held desires to get in the way of letting our children learn at their own pace.

We need to be open, but skeptical.  When we hear wonderful, miraculous stories, but then see video of the individual NOT looking at the ipad or the letter board or the laptop, we should wonder.

And above all, we should wonder why the facilitator has to hold the devices rather than putting them down on the table and letting the individual type. Why does communication only appear to happen when the facilitator is beside the person, holding the device or the individual's hand?

This just shouldn't be the issue it is. It should be a no-brainer. We should want to make sure there's no way anyone ever co-opts the voice of another person. We should want to ensure that the instruction disabled individuals receive really is instruction, that their communication is genuinely their's. It isn't about doubting capacity to learn. It's about providing the opportunities to learn and accepting that everyone is different and that this really is okay.

And yet, proponents of FC and RP  will ignore my commitment and desire to make sure individuals truly are speaking for themselves and instead accuse me of not caring about the disabled.

Go figure.


FACILITATED COMMUNICATION RELATED POSTS

Facilitated Communication: Same as it Ever Was (Same as it Ever Was)
This Is The Song That Never Ends: Facilitated Communication
A Look at Facilitated Communication Posts and Disappointment
Cheating: There Should Be No Shortcuts (and FC is)
Confusing Terminology: When Parents Use Jargon Differently (or when facilitated is used instead of augmentative)
Facilitated Communication Quackery gets Journalistic Promotion in Annapolis
Facilitated Communication: A Price Too High To Pay
Facilitated Communication: A Review of the Literature (with a new introduction)
Fried Chicken Initiatives, Internet Laws, Cognitive Dissonance, and Self-Justification
Holding Educators Accountable For Evidence-Based Practices: FC Isn't One
Navigating the Autism World: Minefields at Every Turn (FC is still Bunk)
Skepticism of Stories to Good to be True
So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?