3/31/2014

New Numbers on Autism and Why I'm Not Panicking

With three kids on the spectrum, and so many family members with autistic traits, to include my husband and myself, neither of these things scare me: a study showing that autism is present before birth and an increase in the number of children being diagnosed with autism. Once you see autism and know it, you recognize it in others far easier, and it, if your frame of reference is not one of panic and fear, surprises you not at all.

It becomes a normal human variation, with some distinct benefits and several distinct disadvantages in a hostile environment.

Onto the big things of last week:

Autism is present before birth.

"A STUDY published last week found that the brains of autistic children show abnormalities that are likely to have arisen before birth, which is consistent with a large body of previous evidence."-- New York Times

We're diagnosing it more often in 8 year olds. When we look for something, we're more likely to find it.

From the CDC:
  1. About 1 in 68 children (or 14.7 per 1,000 8 year olds) were identified with ASD. It is important to remember that this estimate is based on 8-year-old children living in 11 communities. It does not represent the entire population of children in the United States.
  2. This new estimate is roughly 30% higher than the estimate for 2008 (1 in 88), roughly 60% higher than the estimate for 2006 (1 in 110), and roughly 120% higher than the estimates for 2002 and 2000 (1 in 150). We don't know what is causing this increase. Some of it may be due to the way children are identified, diagnosed, and served in their local communities, but exactly how much is unknown.
  3. The number of children identified with ASD varied widely by community, from 1 in 175 children in areas of Alabama to 1 in 45 children in areas of New Jersey.
  4. Almost half (46%) of children identified with ASD had average or above average intellectual ability (IQ greater than 85).
  5. Boys were almost 5 times more likely to be identified with ASD than girls. About 1 in 42 boys and 1 in 189 girls were identified with ASD.
  6. White children were more likely to be identified with ASD than black or Hispanic children. About 1 in 63 white children, 1 in 81 black children, and 1 in 93 Hispanic children were identified with ASD.
  7. Less than half (44%) of children identified with ASD were evaluated for developmental concerns by the time they were 3 years old.
  8. Most children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2.
  9. Black and Hispanic children identified with ASD were more likely than white children to have intellectual disability. A previous study has shown that children identified with ASD and intellectual disability have a greater number of ASD symptoms and a younger age at first diagnosis. Despite the greater burden of co-occurring intellectual disability among black and Hispanic children with ASD, these new data show that there was no difference among racial and ethnic groups in the age at which children were first diagnosed.
  10. About 80% of children identified with ASD either received special education services for autism at school or had an ASD diagnosis from a clinician. This means that the remaining 20% of children identified with ASD had symptoms of ASD documented in their records, but had not yet been classified as having ASD by a community professional in a school or clinic.

So what do parents of children on the spectrum do with these bits of information?

File them and keep on swimming.

It doesn't change anything for us, except let us know that our tribe is getting bigger.

Autism may be an underlying feature in our home and in our children (and ourselves--as BAPpy people), but it is not THE feature. We recognize each of our unique personalities, quirks, issues, and strengths. We got this. We adapt, and we work at recognizing where we fit in and where we don't, and we construct a life that caters to our strengths and we find our niche. If we find where we belong, we are happier with who we are, where we are and what we are doing.

I would make an awful salesperson. I make an excellent teacher.  So, I'm a teacher, not a salesman. 

There is no real normal. Not really. That's a myth that the majority, who keep their quirks hidden if it would cause them harm from others, push on outlyers. I don't have to fit in with something that's not real. I can go where I belong. 

I can raise my children to believe who they are is awesome and that their tribe awaits them. And so I do that.

I can give them the tools to navigate the necessary forays into the midst of the muggles so that they can get in and out in one piece.

It doesn't mean I have to turn them into muggles, just teach them the muggle phrases they need to be able to use.

The greatest gift we can give ourselves, each other, our children is the freedom to be who we are.

3/16/2014

Puppy Time




Sometimes, you have to do the unexpected. Monday, Lily was finally able to communicate how badly she wanted a dog of her own--how sad it made her to see Bobby and her dad with their own dogs. Cats just aren't the same, she said, and she's right.

So, we went searching and came home with this little beauty, a schnauzer mix who is 9 weeks old, and named her Snapple. She fits right in. And Lily  is head over heels in love and has been very responsible in caring for her puppy.

I admit I might be just a little jealous that I am no dog's main person. Sure, I'm Sam and Val's second person when Rick and Bobby aren't around. But to be a dog's person? It's been a long, long time since I had that honor.

Still, there are more than enough critters to get attention, so I guess I'll live with being second fiddle.













3/15/2014

Celebrating Five Years Today

Five years ago today,  I wrote my first blog post. If you'd asked me then if I could have imagined how blogging would change my life, my beliefs and my attitude towards all manner of things, I'd have snorted derisively.

But it has been a huge life changer. I've made the closest friends of my life online. They have supported me, loved me, and straightened me out so many times over the last five years. Even those people who have come and gone, who've engaged in adversarial exchanges with me, have contributed to who I am today.

I think this is a good thing, to be open to change, to be ready to question assumptions and beliefs, and to learn how to be humble.

Humility and compassion have at times, it feels, been beaten into me through some of the criticism that has been lobbed my way when I have gone too far, been too certain of my words and my superior position.

Blogging and interacting with strangers all over the world have been good for me. Getting negative reactions have probably been the most change-provoking of all my interactions. I think it's good to get your ass handed to you every now and then.

Sometimes, I'm wrong. And I need to know that and own it. Sometimes I am not kind, and I need to know that, too--have it tossed back at me so I know how it feels.

Sometimes I butt into somethings I shouldn't have, or criticize things that are none of my business. Sometimes I go too far.

All of these things need to be owned and acknowledged. It's not enough, though, and amends need to be proferred, even if they aren't accepted.

I think I'm a better person--kinder, less snarky, less quick to judge. I think I am imperfect and need to get comfortable with being humble. I think opening myself up to the world, to criticism and praise, alike, provide a good opportunity to promote humility.

So here I am five years into blogging. I think it's definitely been worth the journey. I've met some extraordinary people along the way, made friends and probably some enemies. I've learned to see my children differently, to respect their journey as their journey, not mine, and I've come to realize there are as many paths as there are people.

I regret that along the way I had to alienate or hurt some people in order to learn those lessons. I hope that in the next five years of blogging I can continue to grow and learn but that this five years will not see me doing it on the backs of people I've hurt.

To those of you who've been with me this whole time, thank you.  And to those I hurt, I apologize and wish you well on your journey.

3/06/2014

Defining/Confining

We like orderliness and predictability. We like to categorize things and people and we have a hard time when something or someone doesn't fit neatly into a box.

I don't want to fit in any one's box, not even my own. I don't want to get comfortable with being defined or confined. I want to continue to grow and change and evolve, to become better. I want the same for my children and for my students.

I want that, but sometimes I have a hard time with change. So even as I ask for people to allow me to not be defined/confined, I can have a difficult time allowing the same for them. It's the catch-22 that most of life seems to be.

I think a lot of the time, change is slow enough that it allows people to stretch the box's limits unnoticed, but other times, changes are so cataclysmically rapid that we want to reject them out of hand. And sometimes it pisses us off that change is so great we no longer know how to define someone.

Think about the times you've learned something so out of character about someone you know and care about. Was it really so out of their character or was it just so out of the box you had confined them to? Did they ever really fit there in the first place or did you just decided they did?

As my children grow up, I have to work hard to allow their boxes to shift their contours, grow, shrink, transmogrify. Indeed, I may have to learn how to dispense with the box altogether. It means I won't have a neat and tidy categorization for them but it also means that there's a greater chance they'll be completely free to be themselves openly with me. If I learn to roll with change, especially in them, then I will be helping them learn to be open to other people's change.

Think about it. No boxes might just be awesome. The mystery, the majesty, of the change people are capable of might become something motivating.  What will today bring for me if I refuse to box myself in and refuse to box others in?

Anything could happen. And it would be free and welcome to. Fear of rejection would recede. Acceptance of uniqueness might grow exponentially.

How cool would that be? If you didn't label me? If I didn't label you?

3/05/2014

The World Hurts: End the R-Word

r-word.org

Last year, I let this day slip by. I'd written about it the three previous years. I spend a lot of my time trying to create empathy for people (all people), and this--the casual disregard for people with intellectual disabilities, the widespread belief in our society that people with disabilities are disposable--hurts. It isn't the word that hurts--though it does--it's the WORLD that hurts.

And it breaks my heart. As my friends on facebook and in the blogging community do their part to raise awareness of the effects of this word, my news feed on facebook and on sites across the internet is full of mockery and disdain for actresses who've had plastic surgery, for actors who fumbled a singer's name, for a college student porn star.

I see more and more nastiness and hate, and even when that is cloaked, there are people pushing for isolation, segregation, separation and making other people with different belief systems or different lifestyles into second class citizens--which is still hate even when it's cloaked in religious belief.

None of us are exempt. None of us are free from mocking someone else or laughing at someone else's expense, and our typical response is to react as if the other person is being hypersensitive.

Really, what was so wrong about Ellen's joke to Liza Minelli? To the transgender/transsexual community, it was yet again proof that they are outsiders whose function in our society is to be laughed at, mocked, belittled, and beaten. But it was just a joke, people say. They should have thicker skin if they're going to choose that lifestyle.

No.
No.
No.

None of us asks to be mocked, belittled, abused, made fun, or disposed of. And when we do that to others, be it to a group or to an individual, we are making the world hurt. We are a part of the problem. We are the problem.

And I don't see that changing any time soon. And it hurts because I know that I'm not exempt from this--that I have mocked, been snarky, I have hurt other's feelings, been insensitive, and I don't know that it's possible to change this element of human nature.

Look at the contrast between John C. McGinley's real life work to help end the r-word and his character on Scrubs. We enjoy watching people mocking  others. Humor is often cruel to outsiders--Carlos Mencia's humor focused on dee-dee-Dee (making fun of the intellectually challenged). And people laughed away. 

The world hurts. And it's not just the words. It's not just the mockery. It's the actual discrimination. It's the abuse and the torture and the murder of those who are disabled and different.

It's the deep-seated belief that human beings are expendable and disposable. It's the joy we take in watching movies that glorify violence and in video games that let us be the slaughterers of hundreds of virtual people.

It's ignoring genocide in Africa. It's ignoring the persecution of gay people in Russia and dozens upon dozens of other countries. It's closing our eyes to euthanasia of the disabled. It's pretending that not all people are human beings of equal value. 

So, yes, please...stop the r-word. It's a start. But if you're just substituting another word to continue to mock someone different...you haven't changed anything but the word. And the world will go on hurting.