Autism Unexpected: Revised DSM Criteria for Autism Raise Questions

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My son Jack has a diagnosis of PDD-NOS, short for pervasive developmental disorder-not otherwise specified. Basically he’s somewhere on the autism spectrum, often considered to be in the middle between Asperger’s syndrome and classic autism, although individuals diagnosed as PDD-NOS are actually a very diverse group.

According to the DSM-IV, the most current edition of the Diagnostic and Statistical Manual of Mental Disorders and considered the bible of standard criteria for the classification of mental disorders, PDD-NOS is one of five subtypes of autism.

However, once the DSM-5—the upcoming revised edition of the manual—is released, PDD-NOS and its cousins, Asperger’s syndrome, Rett’s disorder, childhood disintegrative disorder and autistic disorder will disappear into an umbrella diagnosis of “Autism Spectrum Disorder.”

The DSM-5 proposed revisions have just been released, sparking discussion on the merits and disadvantages of the changes, which propose to include “severity levels” to differentiate between individuals on the spectrum.

The American Psychiatric Association includes its rationale for doing away with more specific subtypes, claiming that “distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.” What they mean is that individuals less severely affected might be considered Asperger’s not because they meet the specific criteria of the syndrome, but because of their more moderate level of impairment.

The APA goes on to say that “because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category.” This common set of behaviors falls in the domains of social/communication deficits and fixated interests and repetitive behaviors. They also defend the new language with the somewhat bizarre argument that the prior criteria were “equivalent to trying to ‘cleave meatloaf at the joints.’”

I haven’t decided yet whether I agree with the changes or not. Because no one outside the autism community really understands what PDD-NOS is, I already just say that my son has autism. In fact, PDD-NOS can be almost as general a term as autism itself. I don’t know that much will change for him. However, I think calling him “Level 1 ASD” will probably be just as confusing, possibly more so.

However, there are many individuals with autism, particularly those diagnosed with Asperger’s syndrome, who strongly identify with their diagnosis. Many of these self-proclaimed “Aspies” understandably mourn the loss of Asperger’s as a diagnosis. There is definite value in having pride of self-identity.

I doubt that the term “Asperger’s” will wink out of existence once the DSM-5 is published, but I wonder if this will be the last generation of Aspies, without further formal diagnoses. Perhaps informal or self-diagnoses of Asperger’s will add new members to the club.

There has also been speculation that some individuals could lose their autism diagnoses under the new guidelines, and that fewer people will be initially diagnosed. This would cause serious repercussions for children and adults in need of services who would no longer qualify without a diagnosis. Furthermore, girls and women are often overlooked because autism can manifest differently in them. The revised definitions do not address this.

The autism spectrum is already such a vast umbrella, I wonder if there are repercussions to eliminating the stripes that break up the current definition. While sharing much common ground, in many ways, my son is as different from individuals on the very severe end of the spectrum as he is from individuals not on the spectrum at all. Regardless, I certainly don’t object to my son sharing a diagnosis with those on the severely affected end of the spectrum and, in fact, firmly believe that he should.

In the end, there are many ways to be autistic in this world. I wonder if maybe there is value in recognizing that.

Originally published at Autism Unexpected on January 29, 2011.

Our No-Power Day Turned Out Kind of Great After All

So honestly, even I am tired of hearing me complain here and on Twitter about my power going out every time there is a storm, but what am I supposed to do when EVERY time there is a storm, my power goes out?

I am also tired of hearing myself complain about school being canceled EVERY time there is a storm, but between a teacher work day on Monday and THREE weather cancellations, my kids have been in school for ONE day this week and they’re not going tomorrow either.

C’mon. It’s not like kids need lights or heat to learn, do they?

I was so saddened last night when my power went out. I got surlier and surlier as the house got colder and colder, with the exception of the refrigerator and all our food, which got warmer and warmer.

When I woke up this morning and our power was still off, I knew that I would have to leave the house or I would FREAK THE FUCK OUT and be unable to claw my way back to sanity. So we packed up a laptop and some DVDs, wrapped a blanket around the mouse cage, and bid the pets good luck and godspeed.

Our plan was to go to a museum and then spend the afternoon watching movies at Alex’s office while he worked around us. At some point I remembered about the Lego exhibit at the National Building Museum. Last summer when we went, we spent forever building Lego structures. I was hopeful the same would happen today.

We walked up to the museum just as they were taping up a sign informing us that because of the weather, they would not open until noon—a full hour away. I tried to call bullshit, because they were obviously inside, but the only people who heard me cursing were my kids.

When that didn’t work, we killed some time by playing on the giant Allen wrench sculpture outside.

Then my children ran in circles for a little while.

Then I took them to lunch at the Burger King across the street. At this point it was 11:32, so we played Team Stimey’s version of 20 questions, which involves hints and, when Quinn is the one taking questions, requires that you ask, “Is this thing something imaginary from the video game you’re creating in your mind?”*

The answer to that question is inevitably, “Yes.”

Surprisingly, Sam and Jack are remarkably good at figuring out what he’s talking about.

* Quinn will be creating Monkey Kong Country when he is 20 years of age. Nintendo, you’re on notice.

We were finally granted access to the museum and went to buy our tickets to the exhibit. One of the things I love more than anything in the world is being in buildings that have miniature renditions of themselves inside. The Building Museum is currently one of those places.

They were setting up for an event, which is
why it looks like moving day behind my kids.

If you haven’t been to the Building Museum, this is what it looks like. I circled the mini representation of the building, which was inside the mini representation of the building. You can’t beat that.

Even Lego Stimey loses kids.

We headed upstairs to our destination, where we spent about four seconds looking at the actual exhibit, which are Lego renditions of famous buildings. Whatevs. We’d seen it. Bins of loose Legos waited for us in the next room! Actually Sam thought it was cool and went back to look after building his own structures for two hours. There is a Lego Fallingwater and now Sam wants to go see the real thing.

Meanwhile Jack built Legos and didn’t speak of anything but Legos for two and a half hours. He was in his happy place. I was too. It was the best place we could have ended up today.

This was before the other power-outage/school cancellation refugees arrived.

Quinn insisted on building a car, which was a little bit of a problem, because out of literally thousands and thousands of Legos, I could only locate two wheels. Fortunately, Sam eventually located two more wheels and after the Quinn/Sam fist fight over who got to use all four of them, we had a car.

The car is one of those video game ideas from Quinn’s imagination.

Sam, who is the least Lego inclined of all my children, had a blast. He built a house and a lake and helped his brothers build things and spent probably an hour building a tall tower with me and also built a baseball stadium.

I REALLY need one of these rooms in my house.

The tower that Sam and I made was the tallest structure in the room for a really long time. That is, right up until this little girl brought her tower over, put it next to ours, noticed that it was slightly shorter, built it up a little, then put it back right next to our tower and smirked away as her mom took photo after photo of her self-righteous little grin.

This must be how the Sears Tower feels.

Sam was going to make his taller and crush the little girl, but I talked him into letting the small child take the win. Her hubris took her down though, because she kept playing with her building (rookie mistake; you don’t play with Legos) and eventually she broke it into many pieces.

That’s our stadium on the left and Stimey Town on the right.

There comes a time in every visit to the Lego exhibit when you have to pack up your shit and leave. We meandered around downtown DC, headed toward Alex’s office and made both friends and enemies on the way.

Friend: The cute girl that Jack made a catcall noise at who laughed and told him he was cute. (In my defense, I have NO idea where he learned that. I’m going to guess Tom & Jerry.)

Frenemies: The guards at the Department of Justice building who are hella serious about defending their turf from idling cars, security threats, and seven-year-olds (Jack again) who step up on the curb where they stand. On the way out with Alex two hours later, the guards laughed and said, “We remember those boys!!” Good to make an impression on the people with guns.

Enemies: The hapless business people who were unfortunate enough to walk in front of my children when they were kicking snow. Fortunately, most of them don’t carry guns. Most of them.

They look so innocent, don’t they?

Between leaving the museum and arriving at Alex’s office, I got a text from my friend telling me that the power in my neighborhood was on. There is not a lot that is better than getting that information. I imagined my pets at home emerging from under their blankets (cats) and barking at the suddenly whirring and beeping electronics (dog). We decided to continue on to Alex’s office so that we could all go home together when he got off work.

The kiddos played DSi while we waited for Alex to do his lawyer stuff. Quinn is a big fan of the Nintendogs game he got for Christmas.*

It’s even more fun to watch him play fetch with
his fake dog when his real live dog stares
wistfully at him from the couch.

Even though my friend had promised that my power was on, we all got tenser and tenser as we approached our house, sure that somehow it would have gone back out or all the houses in the neighborhood but ours would be lit up. Happily, we arrived home to a house ABLAZE with lights.

For a day that started out as a complete bummer, it actually turned great pretty quickly. My kids and I had such a fun time together. Sometimes setting out on an adventure hoping for nothing more than not being miserable turns into a day to remember.

* Disclosure: I bought Nintendogs, but I do have a relationship with Nintendo as a brand enthusiast

Based On His Reaction, I Don’t Think That Was Laughing Gas At All

The last time Jack went in to get his teeth cleaned, the dentist expressed grave concern over his teeth. See, at the visit before, she’d already noted that some of his back teeth were soft and not properly formed and that they were prone to decay, no matter what we did. When she saw what had happened in the six eight months since his last appointment, she was extra worried.

As if Jack didn’t have enough problems.

She is a great dentist, but doesn’t specialize in either children or special needs individuals, so she referred us to a pediatric dentist with that exact specialty and told us to go there as soon as possible.

Of course it took us three months to get an appointment.

That appointment rolled around today. After an exam and x-rays, the dentist told me about Jack’s three cavities in his soft teeth. She also used phrases such as, “seal this fourth one,” “may have to crown this one,” and “we need to get to this one quickly to prevent a total root canal.”

Naturally, her next opening was in April.

But then she told me about an opening in the afternoon this very day and we decided that we would come back to take care of the worst tooth; the other two could be fixed later. Because it was a same-day appointment, we would have to forgo the pre-visit Valium and rely just on laughing gas. Based on Jack’s temperament and his history of mellow, even enthusiastic, behavior at dentists in the past, we figured this would be all right.

In fact, this might have been a mistake.

Pre-tooth repair.
Poor trusting bastard doesn’t know what’s coming.

Once we got in the room, I put Sam and Quinn in the corner with their video games, Jack selected “marshmallow” as his preferred scent for his laughing gas, and the dentist pulled out the biggest motherfucking needle I have ever seen in my life.

Somehow they managed to disguise what they were doing. Jack never even knew that they gave him a shot.

At this point I was optimistic, but things went downhill from there. First his hands started to clench and he kept trying to point to his mouth. Then his legs started to twitch. Then he started to moan. Then, as much as possible with the entire dentist’s office in his mouth, he started to tell us—AS LOUDLY AS POSSIBLE—how unhappy he was with the situation. Then his body started to contort.

I’m pretty sure most of it was sensory discomfort. I really do. I don’t think he perceives that kind of thing as pain, but I do believe that it was not an easily tolerable situation for him. Of course, at some point, we passed the point of no return, but until then, the dentist was making sure that he was able to handle it.

As the screaming got louder, however, she worked faster and faster.

And, oh dear lord, the screaming. Because that’s where we ended up. Screaming. The dentist asked an assistant to close the door, I assume to muffle the sounds of the torture chamber.

After it was all over, Jack kept asking me to “take it out!” because he didn’t quite understand that his numbness wasn’t a foreign object in his mouth.

Being the empathetic souls that they are, Sam and Quinn didn’t look up once.

Oh, it was terrible. Honestly, I don’t think there’s anything we could have/should have done differently. That tooth needed to be fixed ASAP and everyone did the best they could, but I gotta tell you, I’m not sorry that we weren’t able to make an appointment for the other two teeth until April.

We’ll be giving him Valium before those appointments, that’s for sure.

I have a photograph of Jack wearing his little oxygen mask because he wanted to look in a mirror, but I didn’t have one so took a photo instead. I was going to post it, but you know what? It is too sad. I just can’t do it. He looks so distressed in the photo, I just don’t have the heart to put it up here. Instead you can see this one, which I took shortly before bedtime, after he had forgiven me.

Thank God for Jack hugs. Seriously. They’re like crack.

I recognize that this doesn’t make me sound like the best tooth parent, but I swear that Jack brushes his teeth twice a day and he uses a dentist-recommended rinse every day, and I swear to God we are going to start helping him floss his teeth every single day from now on. I would also like to say that I would gladly undergo a root canal with no sedation if Jack never had to go to the dentist again.

Also, I’m looking into some Valium for me at those next appointments as well.

Dipshit Friday: The Alex Almost Ate Dog Food Edition

All of this happened in December, but it is still quality dipshittiness.*

My friend Heather got an unsolicited bag of Pup-Peroni (don’t click that link unless your speakers are turned off, for realsies) in the mail, which was awesome, except for the fact that she doesn’t have a dog.

Score for Cassidy! (Our dog.)

She dropped the bag at my house and I left it on my counter until such a time as I felt that Cassidy would deserve such a scrumptious treat. Just so as you know, this is what the bag looks like:

Scene: Alex comes home from work, sees the bag on the counter, becomes excited that I purchased beef jerky, wonders briefly why I bought chicken flavor (because that is the wording that caught his eye on the package), and is seconds away from eating it before the doubts start to surface.

At this point, he proceeded to berate me and the Pup-Peroni people for not making it clear on the package that the jerky is intended for dogs. I managed to find the tiny writing that said “DOG SNACKS,” but that didn’t assuage him either.

I assume that the thinking behind making that text so small is because the good folks at Pup-Peroni assume that the GIANT “Pup” on the front would be a pretty good indication to most individuals that THIS IS NOT HUMAN FOOD.

Awesomely, Pup-Peroni’s slogan seems to be “Dogs Just Know.” Evidently Alex doesn’t.

* Judges? Yes! “Dipshittiness” IS a cromulent word.

Triad

One of the best things about having had three kids in just over three and a half years is how much fun they are together. I love seeing them form bonds and friendship and seeing all the permutations of that friendship, what with the shifting alliances and whatnot.

Regardless of who is in favor and who is besties with whom, Sam is virtually always the leader. He tends to be a benevolent ruler most of the time and has apparently earned the love and respect of his loyal brothers.

One day last week, I found the following two notes randomly around the house, the first one from Jack and the second from Quinn. I don’t know what Sam did, but it must have been awesome.

Dear Sam, Well Done! I love you! You are my Bro! From, Jack*

* I have no idea what the goo smeared all over the note is. Welcome to my life.

I do have a sneaking suspicion that the accomplishment may have been video game related. Also, while the last sentence looks like a statement of fact, I have a feeling that it carries some emotion with it as well.

Being a grammar nerd (used to be a copy editor, remember?), I’m also very proud that other than a couple of capitalization errors, Jack punctuated the hell out of that note.

Now, when you look at Quinn’s note, you should remember that he is just learning to read and write—and a cuter thing than watching a five-year-old learn to read and write, there cannot be.

Sam I love you. I will have a party. We’ll be friends forever.*

* Official translation, supplied by Quinn

I have very little idea what the pictures represent, although it looks a little bit like Quinn plans to shut Sam in a large container.

It is such a cool thing to see my kiddos grow together. I have long said that I would love to have a gajillion kids, but I don’t want to give birth to them or pay for them. And I’d need a live-in nanny.

I specifically remember the moment (I was in my car at a traffic light coming home from a pediatrician appointment) when I realized that in no way was I equipped to parent more than three children.

Much as I would like for them to be part of a huge family of kids, they are destined to be part of a triad, which is not such a bad thing. Especially when that triad is made up of the Elements of Awesome: Sam, Jack & Quinn.

A Card Game of His Own Invention

Remember how last week Quinn stayed home on Thursday and Friday? Well, he spent about an hour on Thursday making playing cards. Every one was different and beautiful in its own way. As he created them, he kept telling me about the actions associated with each one.

I couldn’t tell you what these are for.

On Friday, Quinn was practically twitching to get his brothers out of the house so we could play his card game. I was all, “Oh. We get to play? Greeeeaaaatttt.”

The game was about as coherent as you might expect.

You put that card on the pile!

I don’t even know who won. Mostly I just had to put cards on top of other cards. Occasionally Quinn re-dealt them.

“What’s this one for again?”

He even made a card that pretty adequately described what I was feeling.

Huh?

If you haven’t guessed by now, this is mostly a post to tell you how cute Quinn is. Also, I don’t have anything else to write about. I now present to you…The Many Moods of Quinn.

The Ice Storm

Monday night as I was going to sleep, I could hear the click clack of ice hitting my roof. Even with the knowledge that the prophesied ice storm had, in fact, occurred, I was completely unprepared for Alex waking me up yesterday morning with the words, “The schools are closed.”

I had been sooo prepared for a two-hour delay, but not for an entire day off. I forced Alex to repeat himself three times. Then I sobbed gently into my pillow.

See, it’s been a long couple of weeks. Alex was out of town last week, so it was me and the munchkins all by ourselves. Sam had two half-days home last week, and Quinn? Well, Quinn hasn’t been to school since last Wednesday.

He was lethargic for about an hour on Thursday morning, so I kept him home, because after you email the teacher telling him that your kid has a fever, you can’t send him in at noon. Then, on Friday, he was all phlegmy and gross and even though he was perky as hell, it seemed like bad form to send a very obviously sick child into class.

My email to the teacher included the line, “Much as I would like to send Quinn to school so he could talk to YOU all day…”

Then there was the weekend and then Martin Luther King, Jr. Day (which we celebrated with cake, per usual), and then the devastating news that no one but Alex was going to be able to escape the house on Tuesday.

But much as I wanted to complain about school being canceled, it was probably the right decision, what with the inch-deep coating of ice on the ground.

All local plant life was encased in ice as well.

Honestly, I think my kids were ready to go back to school as well. After I refused to let them turn on the television and told them that they would have to wait until at least 5 o’clock to do so, they upended all the couch cushions and pretended that one of them was a television.

Sam is using a foam banana as a remote.
Also note the timer in the foreground, counting down until 5 p.m.

When that got boring—and it did fairly quickly—they constructed little houses out of the couch cushions. This was my favorite part of the day, both because it was very cute and creative, but also because they spent a good amount of time quietly inside their homes.

Quite a feat of engineering, actually.

Naturally, however, with Team Stimey, eventually everything just gets piled in the middle of the room and jumped on.

Fortunately, Quinn survived.

Clearly it was time to force my children out into the icy outdoors. Unfortunately, once they were outside, it became clear that I had to shovel. And while I use the word “shovel,” what I really mean is “bash angrily at the ground with an inadequate tool,” because clearing an inch of ice off of the sidewalk is not at all like snow shoveling.

My snow shovel (scooper-style) was ill-equipped for ice shoveling (ice pick needed). Fortunately Sam stepped up with his own little bent, blue shovel and helped me out. We abandoned our driveway because that ice would only kill us, but the city says we have to clear our sidewalk in case the public ice kills others.

Stupid sidewalks. The people on the other side of the street don’t have a sidewalk. Lucky bastards.

I also cleared my porch steps because last time there was a big snow and the mail didn’t come and I complained about it, someone was all, “Well, did you clear your steps? Tons of postal workers get injured after storms because people don’t clear their steps.” At first I was all, “Neither snow nor sleet nor…” and then I was all, “Huh. That’s a good point.”

So I shoveled my porch and the mail carrier came and all was well with the world. You’re welcome.

Sam was really helpful with the sidewalk. I started at one end and he started at the other. He got a little irate when I stopped shoveling to take photographs. Something about his back hurting. Wuss.

 Quinn was a hindrance, literally doing a little dance directly in front of my active shoveling.

 And Jack spent some time shoveling the lawn.

Then we had the ice ball fight, which was also even less awesome than it sounds. I mean, it was all fun and games until someone got hurt. And, yeah, they had a lot of fun. But then, yeah, someone got hurt.

I wasn’t actually involved in the fight, but I did let it happen, which I suppose means I bear some responsibility for the wounds Quinn sustained when he got hit with an ice ball right in the face.

This upsets me no end, because there is nothing I like more than avoiding responsibility.

Not sure you can see the numerous tiny abrasions
in the photo, but it was kind of dramatic.

The thing that made it all worthwhile though was when Jack walked straight up to our neighbor, who was also chipping away at his driveway, and said, “Ice to see you!”

It was adorable and funny, but mostly I was astounded because MY AUTISTIC CHILD JUST MADE A PUN!

Later I learned that this is actually a line from The Incredibles, which Jack hasn’t seen for at least a year, so now my pride is twofold:

(1) Jack has an incredible memory and is awesome.

(2) Jack has the ability to see more than one meaning in a word (something he is working on in speech therapy right now—and having trouble with, by the way) and use this dual meaning (scripted or not) to make an appropriate and apt joke to a neighbor. And he’s awesome.

Even more awesome is that, as I write this, the ice is melting and all my children are at school. (Okay, it’s not actually more awesome, but it is still pretty awesome.)