Friday, December 26, 2008

I couldn't say it better myself

Another post from Autism Vox, this one on the vaccine controversy that is, as she says, "a false controversy":
2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

I know there are folks who read my blog that are in the anti-vaccine camp, so it must be frustrating to always see me take up the other side. I feel obliged to continue, though, because science has a hard time arguing against emotion, and it seems like the argument for a vaccine-autism link is based on emotions. More from Kristina Chew:

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing ... is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

The autism diagnosis is so devastating that parents are always going to look for something to blame. Vaccines have become an easy target. The same thing happens with other diseases that have often-mysterious causes: cancer, SIDS, Alzheimer's disease.

One place where I will disagree with Dr. Chew is in the area of good parenting. Parents with disabled kids are, for the most part, awesome parents. They don't have a choice. I have more patience with my children than I ever believed I could possibly have. The nature of raising a child with a disability made me go back to my reservoir of patience, dig it out and expand it, and let it fill up even more. There are people who can't handle it--the stories of abuse and murder of autistic children prove it--but those of us who get up every morning (and in the middle of the night) and keep providing love and care for children with very challenging demands are great parents. We need to give ourselves that affirmation every day.

Tuesday, December 9, 2008

Tragic story

I have AutismVox, an excellent blog on autism, on my feeds; unlike my blog, it is frequently updated. I just saw this tragic story about a 5-year-old boy (the same age as Henry) who was duct-taped by his father because he hit other children at day care.

I can't add anything to the description in the story. It's so sad. I've cried before when I had to lock Henry in his room as a punishment or to force him to calm down. I can't imagine doing what this man did to his own little boy.

Sunday, October 26, 2008

Texting--no, it's not teen autism!

This post from the Language Log about "Bad Language" doesn't have direct bearing on autism or even language processing, but it is an intereting little discussion of "sky-is-falling" fears about whether text messaging is limiting the abilities of kids to engage in meaningful face-to-face interactions. It's also a defense of the attitude of linguists that change in language is a normal and (for the most part) healthy development.

From my personal experience, yes, social and language skills can be taught to people who have impairments in social interaction and language (i.e., people with autism), but they aren't skills that unimpaired young people will lose because they like to spend a lot of time texting.

Thursday, October 23, 2008

Mimicry and facial expression

I just read this interesting article on facial expressions from Discover magazine. I thought the information about mimicry and emotional expression was especially interesting in the context of autism (although the article does not discuss autism). People with autism have difficulty with mimicry and also have difficulty with expressing and interpreting emotion (this is probably why people with autism often avoid eye contact).

According to this article, mimicry and facial expressions have a hard-wired brain connection--if you look at someone who is grinning, your brain will tell you to grin too. Even if you're trying to identify a grin, your brain will tell you to start grinning. So if a person with autism has a problem with the mimicry function in his brain, then attempting to interpret facial expressions would be not only difficult but potentially uncomfortable as his brain tries to route messages through a part of the brain that doesn't do exactly what it's supposed to do. Instead, he may avoid the issue by not looking at people's faces.

I suspect people with autism accommodate for the challenge of interpreting expression by learning what expressions mean much the same way they learn to read--a smile is a sign for happy, a frown is a sign for unhappy, furrowed brows and tight lips are angry, etc. But the fact that even adults with autism often avoid eye contact suggests that the challenge of the hard-wired system remains.

Wednesday, October 8, 2008

No, don't, can't

I attended the second session of the series on behavioral interventions for caregivers of people with developmental disabilities on Tuesday, where Marion Hunt gave an excellent presentation. She had a lot of great suggestions, but one of the things that stood out was the idea that in normal parenting/social practices, we reward problem behavior and punish appropriate behavior. Specifically, we give attention to problem behavior, and attention, positive or negative, is a reward for many developmentally or cognitively impared people. At the same time, we ignore appropriate behavior.

I'll tell you, until you try to not acknowledge a problem behavior and only praise appropriate behavior you have no idea how counterintuitive this process is. As a parent, it is so hard to not run around saying "No, no, no!" But, if we want to succeed in modifying problem behavior, that's the shift we have to make.

Ms. Hunt also said that caregivers who work with developmentally delayed people should banish the words "no," "don't," and "can't" from their vocabularies when talking with their people. Again, totally counterintuitive, but much more effective.

Mike and I tried this technique this past weekend at my mother's house, where Henry was tapping his hand forcefully against the lampshades of every lamp he could reach (which was at least six). Instead of saying "No Henry" every time, we started saying "soft touch" and placing his fingers gently against the shade. By the time the evening was over, he was gently touching the lampshades instead of pounding on them, so the negative event we wanted to avoid--a broken lamp--was much less of a threat.

It's very hard to remember just how differently a person with autism perceives the social world, and as parents we have to keep reminding ourselves over and over. As Ms. Hunt said, you cannot expect that your people will know the appropriate behavior in any situation. They don't watch and imitate the way most children do. You have to teach and reinforce the appropriate behavior for every situation and give your child a chance to succeed.

Wednesday, October 1, 2008

Happy Birthday, Henry!

Today is Henry's fifth birthday -- yay!

I'm very happy he's part of our lives. He is a wonderful, loving, special person who happens to have autism.

I attended a seminar yesterday that was teaching approaches to manage problem behavior for people with developmental disabilities. Even though Henry has pretty poor manners (he doesn't know or follow most social rules) for the most part he is well behaved (he doesn't hurt others or throw things). But when he does get upset, it can get pretty intense, so we want to have some tools available.

I arrived late, and just after I sat down another woman arrived and sat next to me. Within moments, she was starting to whisper to me about her own troubles with her child. Now, to me, that's just rude, but she didn't seem to think it was inappropriate. She also made quite a few observations aloud in response to invitations from the presenter, which was fine.

I bring this up because I was struck by the attitude she seemed to have toward her child -- that he was such a problem, and that she was suffering because of his behavior. Also, this is not the first time I've observed this attitude in another parent of a child with autism.

Don't get me wrong--we all need to vent, and our kids do drive us crazy. It is hard, hard, hard. But I find it alien when I hear a parent who seems to regard herself as the victim in the situation. I mean, the kid is the one who has to struggle the most.

I do feel sorry for myself, but the thing that makes me grieve is knowing how unfair this struggle is to Henry. I hate to see him suffer -- he's a good, loving person who tries his best, and he doesn't deserve to have such a hard path. But then I tell myself the same thing, the quote from The Unforgiven, "It's not a question of deserve." This is just the way it is.

I recently rediscovered a copy of a poem by Langston Hughes called "Mother to Son." It's short, so I'll reproduce it here. (Note: Unlike the mother in the poem I've had a pretty good staircase.)

Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor -
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back,
Don't you set down on the steps
'Cause you find it's kinder hard,
Don't you fall now -
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

So Henry, happy fifth birthday, and know that I am not going to give up on you. I know you can keep on climbing.

Wednesday, September 10, 2008

Eureka!

I've been discovered! I just found the first comment on my blog by someone I don't already know! So thank you, gentle readers, for taking the time. I hope I can give you something back.

Speaking of Eureka, one of our favorite TV shows is the SciFi channel series Eureka, about "America's Smartest Little Town." I love it for many reasons, but one reason is because one of the main characters, Allison Blake, has a son with autism. The scenes with Kevin (her son) in the first season really resonated with me. The second season involved Kevin in a rather bizarre storyline about ultimate knowledge, but it wrapped up with him returning to his previous state of mind. However, we're now half-a-dozen episodes into the third season and they haven't even mentioned Kevin's name, so I'm getting somewhat impatient. Come on, SciFi!

Hooray for Pingree!

Didn't I promise that this post would be more upbeat than the last one? Well, there's no getting around it because Henry's doing really well so far at the Carmen Pingree school. He's excited to get on the bus in the morning, he seems happy even though he has to do more work than before, and he's making great progress. Every day the school sends home a detailed record of how much he's progressing in each step of the program--it's really wonderful to get such an intimate view of what they're working on.

On another topic, my friend Jeff inspired me to look for information about research on the causes of autism because he said he hadn't been able to find a lot of articles in the medical literature. He wondered why the studies hadn't been done. I knew they had been done because I've read references to them.

I'm still looking for some details, but in the meantime, this article that discusses a whole bunch of new studies about the sources of autism that are in progress. Many of you may find this quote from the article interesting: "The study has already provided some intriguing leads. 'We’re finding that the immune system seems to function at a lower level in autism,' says [Irva] Hertz-Picciotto. 'That’s an important clue. It could mean that whatever causes autism also disrupts the immune system, or it could be that the immune system disrupts neural development so that something goes awry in laying down brain circuitry prenatally or in the early postnatal period.'"

Riddle me that, Batman!

Monday, August 18, 2008

A good life

I just got finished watching Apocalypto (ugh!) and I need to write about something else to try to erase it from my brain. So hey! A blog post for the first time in two and a half months.

Henry will start the Pingree School on September 2, and his classroom open house is this Thursday. We're really excited, even though we know the initial transition is going to be tough on Henry. He'll be in a classroom for a much longer time than he's been used to. But he'll also have a much better opportunity to learn.

The title of this post was suggested by a conversation I had with my sister-in-law's ex-husband yesterday at a send-off party for my niece. He said, with very positive intention, that with the services available, he believed that Henry would have a good life. Most days, I think I would have agreed with him, if not because I believed it then because it's the polite thing to do. But yesterday I was really down, so I agreed that he'd probably have a reasonably healthy, safe, and comfortable life, but I also said, "That really begs the question, 'What is a good life?'"

I don't have the answer to that question. What makes a life a good life? Is a pleasant life a good life? Is a life rich in experience a good life? What about friends, relationships, and traveling? Will those experiences be possible for my son? If so, to what degree?

By a scheduling fluke, I ended up having an hour-long therapy session with a counselor at the Neurobehavioral Autism HOME clinic last week. We talked about a lot of things (well, she let me talk about them), including my feelings about Henry's future. As I told her, most parents, at some point in their lives, have to accept that their wishes for their children's marriages, educations, and careers won't be fulfilled in the way they might have hoped. Parents of children with disabilities often have to accept that a lot earlier in their children's lives.

I don't mean that I don't have faith in Henry and his possibilities. I don't assume that his life path will follow the least optimistic road. He may go to college, he may have good friends, he may have meaningful romantic relationships, he may have children, and he may have a rewarding, interesting career. But I don't assume that any of those things will happen without a lot of hard work and good luck. I think most parents have the luxury of waiting until their children are in their teens to start doubting the rosy futures they have imagined for their kids.

Hmm. Upon review, I realize this post is rather depressing (and I can't blame that entirely on Apocalypto). I'm going to post it anyway, because it is true, but I promise to make my next post more upbeat (and I won't wait two and a half months to post it).

Wednesday, May 28, 2008

Fuel on the fire of the vaccine debate

Time magazine's cover story, How Safe Are Vaccines?, offers a well-researched counterpoint to the argument that vaccines cause autism. To date, no reliable scientific studies have shown a causal link between vaccines and autism, but that doesn't stop people from believing that the link exists, and more and more parents are opting out of vaccines. After reading the Time article, I'm more nervous about the diseases that vaccines prevent than about autism--though I'm biased, since Henry can't become more autistic and Evie seems to be autism-free. But still, autism vs. polio? I'm pretty sure polio is worse. (Thanks to my brother John for the tip on this article--see his blog here!)

In the meantime, articles like this one about autism-like symptoms in apes will be fueling the anti-vaccine fears, Time magazine notwithstanding.

A good boy who's good at a lot of things

Last week Henry, Evie, and I were outside playing. I was swinging Evie while Henry walked around the garden, and I sang Henry the little song I made up for him (to the tune of "Twinkle, Twinkle, Little Star"):

Henry, Henry, my sweet boy,
Busier than a spinning toy.
Doesn't have a lot to say,
Still he brightens every day.
Henry, Henry, my sweet boy,
Henry is my pride and joy.

He kept walking for a minute, then he flopped into the swing next to Evie, making a sad little sound. Half a minute went by, and then he said, "Not good at."

Once I figured out what he meant, I said, "Oh, Henry, you're good at a lot of things! You're a really good explorer, and you're getting really good at talking!" After that he smiled and seemed to feel a lot better.

Mike and I have noticed lately that Henry's interests and anxieties are becoming more mature, the same kinds of things that any four-and-a-half-year-old would worry about. He's probably been feeling these things for a while, but he hasn't had the ability to express them, and because he still engages in self-stimming behaviors like chewing things and pacing, those behaviors mask the progress he's making.

As I've said to Mike, I think Henry is on the cusp of really making breakthroughs in his language skills, and socially he seems to be getting more sophisticated. It's impossible to know, though, and we don't want to raise our expectations too soon. But moments like this one from last week give us good reasons to hope.

Tuesday, April 22, 2008

A spring thought

We've had a beautiful day today in Salt Lake City, and I spent an hour of it in my front yard trimming away old growth to make way for new leaves, raking up leaves and deadfall to reveal the sprouting plants, and pulling out the unwelcome interlopers that are taking root. As I clipped and pulled, I thought about the word "renewal" and the idea of things becoming new again.

When it comes to spring, for me, renewal is a bit of a misnomer, because it's more like getting back in touch with something that I've long treasured but I've forgotten, neglected, or taken for granted. It's auld lang syne rather than making new. I don't think it's a coincidence that in the past few months, I've put aside my "oh, I'm too busy" excuse and actually called and emailed neglected friends. This blog is no exception--instead of thinking, "Oh, I've got to come up with something to post," I'm now thinking, "Oh, I've got to write a post about that!"

So here's to spring, renewal, and rediscovery.

Thursday, April 3, 2008

"There's a special place in heaven for mothers of children with autism."

Ok, last night I read Jenny McCarthy's book, Louder than Words, in one sitting. And despite my misgivings about McCarthy's public statements, I recommend this book with enthusiasm. (The title of this post is a quote from the book.) Lots of books about autism tell the stories of how parents learned about their children's autism, but few writers bring the experience to life the way McCarthy does. It's often painful to read, but I can identify with lots of these experiences. If you want to know what it's like to have a little child with autism, read this book. I still differ with McCarthy on a few things, but I really appreciate what she's written.

The biggest difference between my experience and McCarthy's is not that she's a celebrity and I'm not, but that her marriage fell apart during this experience, and mine, I am glad to say, became stronger. I cannot express my gratitude at having a partner as loving, committed, and involved as Mike, and I know how lucky we are to have each other in this journey.

Tuesday, January 22, 2008

Good news!

It looks like Henry will be able to attend the Carmen B. Pingree School for Children with Autism this fall. He has been on a waiting list for the free pre-school program for more than a year now, but this fall a spot is available for him. It's the last year he is eligible for the preschool program, so this is a great opportunity.

The Pingree School's program is very similar to the therapeutic preschool program Henry is in right now through the school district, but instead of getting two hours of therapy four days a week, he'll get six hours of therapy four days a week. All the research on autism intervention indicates that early and intensive intervention is the best, so the longer day has the potential to help Henry really boost his development.

What is it like to be autistic?

Several weeks ago my friend Hope and I were talking about Henry, and she asked me if Henry was able to make any friends at school. I told her that Henry didn't have quite that level of emotional sophistication yet--he's still in a state where he's learning to enjoy the company of other people.

I was reminded of this conversation by something Henry's psychiatrist mentioned recently--that people with autism view the world in a vastly different way from neurotypical people. If you are interested in getting a better idea of how autistic people experience the world, there are at least two really good books out there that open a window into that experience. One is Temple Grandin's Thinking in Pictures: My Life With Autism, a memoir of sorts written by a woman with autism. The other is The Curious Incident of the Dog in the Nighttime by Mark Haddon. It's a novel for young adults told from the perspective of a 15-year-old boy with autism. The author is not autistic, but he worked with autistic youths for many years and created his main character from his experiences. I found this book especially helpful in trying to understand Henry, even though he's much younger than the main character.

For a much lighter (and probably less accurate) portrayal of a character with an autism spectrum disorder (ASD), watch an episode of The Big Bang Theory on NBC, Mondays at 7:30 PM MST. The character of Sheldon displays a lot of typical ASD signs: difficulty interpreting figurative language, an obsessive desire for routine and order, and difficulty relating to people and understanding subtle social cues. Sheldon's peculiarities make him the butt of a lot of jokes, but overall he's portrayed in a genuine, humane, and likeable way. Mike and I always enjoy this show because we see elements of our many "geeky" friends (and our geeky selves) in the characters and the situations the show portrays.

Monday, January 14, 2008

Thimerisol or not, autism happens

A CNN report from last week highlights a new study that shows a consistent rise in autism rates in California even after thimerisol (a mercury derivitive used as a preservative in vaccines) was removed from vaccines in 2001. Rates of autism in children born after 2003 continued to rise despite the fact that these children were never injected with thimerisol.

I've had family members express concerns about thimerisol to me, so it's worth saying that Henry, born in 2003, has never been exposed to thimerisol. The jury is still out over whether some kind of environmental factor has influenced the rise in autism diagnoses, but thimerisol is looking less and less like a culprit.

The rise in autism diagnoses is almost certainly due in part to better awareness of the disorder among physicians and broader definitions of autism. For an excellent discussion of the changing definitions of autism since the disorder was initially identified by Leo Kanner and Hans Asperger, see Unstrange Minds: Remapping the World of Autism by Roy Grinker, Jr. It's a fascinating examination of the cultural history of autism by an anthropologist.

Saturday, January 12, 2008

One in a Million--or more

Every day 175,000 new blogs are created, according to this book review from Reason Online. The author, David Harsanyi, is reviewing The Cult of the Amateur: How Today’s Internet Is Killing Our Culture, by Andrew Keen. Keen thinks that all us bloggers out here are burying any good content on the Internet with drivel. Harsanyi conceded one point: "He’s right that the Internet is littered with inane, vulgar, dimwitted, unedited, and unreadable content, much of it fueling outrageous conspiracy theories, odious partisan debates, mindless celebrity worship, and worse. And then there’s the stuff that’s not even entertaining."

Harsanyi goes on to argue the benefits of bloggers in the new media, blaming the decline in traditional media, like newspapers, on the papers' business practices, not on amateur bloggers, as Keen does.

One area the article doesn't discuss (and doesn't need to) is whether many bloggers are targeting a small audience, as I am trying to do with this blog. I have to think that few people who start blogs believe that strangers the world over have a burning--or even passing--desire to read what they say. That's part of the benefit of "Web 2.0"--that it meets the needs of small groups of people and it can be customized by those people.

But you can find yet another viewpoint on this question here.