Back in 2001, I wrote a series of short posts on Autism. At that point, Calvin had been diagnosed and we were about one year into figuring out what it meant.
(Originally posted March 12, 2001)
ASD is Autistic Spectrum Disorder. It encompasses a range of disorders including Autism, Pervasive Developmental Disorder, Asperger’s Syndrome and others. People in the autistic spectrum display a variety of behaviors that qualify them for a diagnosis of PDD. My four year old son is one of these people.
Calvin turned four years old in March, 2001. He was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) a year ago. Since then, we’ve been on a crash course in PDD, ASD and Autism.
Hopefully these pages grow and become a useful site on the subjects of Autism and PDD as well as one family’s story and personal observations. This will take time as I add things. Check back every so often.
What’s Hard, Part 1
(Originally posted on March 13, 2001)
Having a child with PDD is hard for a parent.
Because children with PDD don’t have physical characteristics that make their problem obvious, people don’t expect them to behave differently from normally developing kids. Most people expect an almost four-year-old to be able to tell them his name or how he feels. When my son can’t answer these types of questions, people look at me. The look says, “What’s wrong with him?” or “Is he dumb?.” Most of the time, I’d rather not have people try talking to him, but all parents know that, out in public, people are going to talk to your child. Sometimes, if I feel like the person would understand, I’ll explain why they will not be getting an answer to their questions. Other times i just i just tell them that he’s shy. That can make you sad.
Another thing that makes it hard is what I call “downplaying”. Downplaying is the minimizing of symptoms. Usually, the offending party is well-intentioned; they simply want you, the parent, to feel better. It usually sounds something like, “My little johnny used to do that same thing. He grew out of it, so I’m sure your child will, too.” Or, “Oh, all kids do that. It doesn’t mean they are all autistic.” You get the idea.
These kind of statements put parents in an awkward position. On one hand, you may appreciate the attempt to make you feel better. On the other hand, you may feel the need to correct the person. A child on the autistic spectrum is not just like all the other children and waiting for them to “grow out of it” is simply irrational. This kind of denial is not helpful, especially for parents with a new diagnosis who are just coming to grips with the challenges that lie ahead.
What’s Hard, Part 2
(Originally posted on March 13, 2001)
When you first hear the diagnosis, and then go learn what it really means, lots of lightbulbs go off.
I’ve read and heard statements like, “We always thought that (behavior x) was just Johnny being Johnny.” We were guilty of that also. Calvin did lots of things that didn’t seem right, or that we did not understand, we did not think of these behaviors as “symptoms” of a real problem. It was just Calvin being Calvin. This is one of the forms of guilt that I’ve felt in the past year: the guilt of not recognizing the problem.
In our case, this guilt is somewhat unjustified. Calvin was diagnosed about as early as possible, right around his third birthday. We were told experts don’t like to make a diagnosis much earlier, as things can still change drastically at that age. Still, I feel this guilt. Calvin showed signs from birth that we didn’t count as symptoms of a bigger problem until the psychologist set off all the light bulbs for us.
(Originally posted on March 27, 2001)
It’s hard to believe that it was four years ago today that Calvin was born. I remember his birth very clearly, the whole process. Calvin was our first child, so everything about childbirth was a new experience.
I remember driving him home from the hospital. It was only about 2 miles from the hospital to our apartment, but it must have taken 30 minutes and it felt like a solid hour. I was so afraid to go over any bumps in the road for fear of jostling him is his car seat. He seemed so fragile.
As I’ve said previously, Calvin showed behaviors very early on that we didn’t count as “symptoms” of anything. But looking back now with the perspective of another child and the knowledge of what types of things can signal an autistic spectrum disorder, I think both of us can say that Calvin showed symptoms very early.
Calvin has always had trouble with food. One of the things that all new parents learn is that babies spit up. But we now know that Calvin’s problems holding food went beyond the norm. I won’t forget regularly having to pull off the road to clean him up or having to leave a restaurant because he threw up on one of us.
I also won’t soon forget the tantrums Calvin threw in his first year. First, he would throw these tantrums for reasons that we could usually not figure out. This increased our frustration with his subsequent action – dropping to his knees and banging his head on the floor. Carpet, tile, concrete – he did not discriminate. Often, banging his head would cause him more pain than the original cause of his tantrum.
Thankfully, he has improved on both of these issues. While he still an extremely picky eater, he does not have trouble keeping food down. And with time, he stopped banging his head on the floor in protest. Of course, this behavior has been replaced with others…
No More PDD
(Originally posted on April 12, 2001)
Go read this. This article gives voice to feelings I’d had since we first got a diagnosis. I’ve never been completely comfortable with “PDD-NOS.” That’s “Pervasive Developmental Disorder – Not Otherwise Specified”. Not otherwise specified? Pervasive? These fuzzy, wishy-washy terms don’t give me a lot of faith that there is a good understanding of my son’s condition. “Not otherwise specified” sounds like a catch-all category, like the “other” category on surveys.
To have a well-respected expert in the field come out and say that “PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have” just makes me feel better for thinking the same thing. I’m going to change the references on this site from “PDD” to “ASD”.
(Originally posted on April 20, 2001)
I suppose any parent who learns that their child has any sort of serious health problem goes through the usual anger | denial | mourning | whatever stages. There are plenty of self-help books that will gladly identify and guide one through these various stages. But when all that subsides (I don’t think any of those stages completely go away), you are left with a decision.
You can take what is given, do as you are told, follow the steps given by whatever expert you happen to be able to find. Or you can start educating yourself, asking for treatments and services that might be beyond the norm, but that you believe can be beneficial; extending yourself; trying things; fighting.
For most people, reality lies somewhere between these two extremes. Most people educate themselves to a point they are comfortable with, and they will generally go along with recommendations from doctors, teachers, specialists, etc. But some will take extra steps, sometimes many extra steps, perhaps feeling as though if they don’t, they aren’t doing all they can for their child. Furthermore, i actually think that this is not a conscious determination made at a single point in time after a diagnosis. Instead, I think it is more of a process with a dampening effect. The education process can pull you in one direction or another. Every theory sounds good. Every treatment seems like it should work. Then, as you hear more conflicting evidence, more study results that refute previous results, you start to look at new information with a more critical eye. You start to make decisions about who you believe and who you don’t.
I’m still somewhere in the middle of this process; still in sponge mode, trying to absorb everything I can before even attempting to make decision about what (and who) I believe. At the same time, my wife and I are starting to form our opinions and beliefs. But there is so much information to absorb about Autism. And the output is accelerating. There is currently a diagnosis explosion in the U.S. (and most of the rest of the world). Of course, even this explosion is a point of contention. Are doctors just more aware of the symptoms or is there a genuine increase in incidences? Reading things on the web, books, newsletters, going to an
occasional meeting of parents in similar situations, and, now, starting to go to talk and conferences and listening to experts in the field.
which (finally) brings me to dr. bernard rimland.
more to come…
(Originally posted on June 20, 2001)
Many people think of Dustin Hoffman in Rain Man when they hear the word “autism.” For many, it’s their only frame of reference. I’ve met a few people who deal with autism in one form or another who don’t like this. They don’t want any preconceived notions, any stereotypes, any expectations to go along with the word. I can understand this point of view. Autism is a spectrum disorder – people exhibit a wide variety of symptoms. Two people, both classified as ‘ASD’, could be nothing alike.
At the same time, I think the human brain is relational. We define objects and concepts in terms of other objects and concepts that we already understand. We think in examples. Students always have difficulty defining abstract concepts, but they have no problem giving examples and, in fact, often try to pass off the latter for the former.
So Raymond Babbitt is a memorable example of a condition with which most people are otherwise unfamiliar. The movie definitely has raised awareness of autism. Of course, it made some people think all autistics can count toothpicks and do the other math tricks that only a very small subset of autistics (those with savant syndrome) seem capable of.
My wife wrote an essay not long after our son was diagnosed. In it, she tells of some of the strange questions she had after telling people of his condition. One person actually asked if he could “count cards in Vegas, like Rain Man?” Right. Again, I can see why people don’t like the stereotype.
In the end, I think that it’s too strong an image to fight, and, frankly, its not worth fighting. This is a stereotype with limited downside. The character is, in many ways, the only sympathetic one in the movie. People aren’t going to come away with a negative view of autistics – perhaps a little misguided – but not negative. Instead of fighting, I’ve started to use this relationship to my advantage.
Try explaining autism to someone without the Rain Man frame of reference – someone from another country. While certainly possible, it’s much tougher to make one understand the sometimes subtle things that make autistic people different. Raymond Babbit can act as a starting point.
(Originally posted on June 25, 2001)
My son has always loved to watch television. We haven’t done much to curtail it, but we have been picky about what shows Calvin watches. Against the backdrop of statistics about how many deaths children see on TV by the time they are 10 and how desensitized it seems to make them later on life, we chose to steer him towards shows we approve of. Additionally, it seemed that he got great joy out of these shows. we started buying video tapes and he watched. And watched. And watched. There were a few different ones – Little Bear, Teletubbies – but Blues Clues was the big one.
He also started to imitate the shows he saw on videotape. Little sentences. Cute. All kids do a little of that. For Calvin, it was his best use of language at a very early age. As he got older, to the age where language should start coming on its own, it didn’t. All he really had were lines from the shows he watched. All the lines. Entire episodes.
When he was diagnosed, we learned that this was part of a behavior known as echolalia. We also learned that he exhibited both forms of echolalia – immediate (repeating, over and over, the question I just asked him) and delayed (repeating an entire episode of Blues Clues in the car).
Around the time he was diagnosed, Calvin found a new passion – Thomas the Tank Engine. This left Blues Clues in the dust, both in terms of his obsession and his echolalia. Trains in general, and Thomas in particular, have started to dominate his life. We have spent hundreds of dollars on the engines and other characters (more than 30) and track. And it’s not stopping anytime soon. Every time we go to a toy store (also known around our house as “the station”), he expects an engine. We’ve resisted on occasion, with disastrous tantrums as a result.
Living in the San Francisco bay area, we are only 90 minutes from the California state train museum in Sacramento. It is a wonderful place to take Calvin and see his face. It’s a terrible place to try to leave.
I was compelled to write about this today because we went to the San Francisco Zoo and rode the little puffer train. While it wasn’t the first time – we’ve ridden these little kiddie trains at the Oakland Zoo, the Children’s Fairyland in Oakland, and Traintown in Napa all in the last year – but today was different.
While we were riding, I watched the conductor of the train – an older man, probably retired, with bib overalls and a conductor’s hat. My wife and I talked about how that job, or perhaps a job at the train museum, would be a perfect job for Calvin someday. My wife said, “I would move to Sacramento for that.”
We’ve started thinking that way, looking for things that will make him happy later in life. I suspect that, as he gets older, we’ll narrow in on how much we (and he) can expect out of his life.
What type of life he will lead as an adult? Will he be able to have a job? Will he be able to live on his own and take care of his own basic needs? These are the kinds of questions that, although its way too early for us to predict answers, we are starting to ask ourselves. I guess we are lucky that we can ask them – some parents already know the answers.