There is a rather annoying article from The New York Times today which talks about new definitions of autism that will reduce the number of children diagnosed. A sort of bell curve of autistic symptoms where high functioning autistics and those with Aspergers or PDD-NOS may not get the early intervention services they need because they aren't autistic enough. As Dr. Fred R. Volkmar says in the piece of the surge in autism diagnoses:

“We would nip it in the bud.”

Wow, that sounds like a guy who doesn't get it. We would nip it in the bud? Great choice of words doctor! This reads like he believes autism is like welfare abuse or some sort of insurance scam. I'm still not sure what people think parents of autistic children are getting from the diagnosis. If they are handing out money to parents of children on the spectrum, I'm still waiting for a check. Do they think we long for our kids to have their own personal babysitter at school in the form of an ed tech? Yeah! Isn't that every parents dream??? I think it's more likely there are budget cutting agendas in mind and not so much what's best for these kids who need some help. Color me shocked.

I was watching a little Spongebob with Curt the other day and just before the end of the episode, he asked me why Mr. Krabs had set up a hotel. As so often happens, Curtis had missed the entire point of the episode which unfolded in the the first few minutes. That Mr. Krabs set up a hotel and you had to rent a room in order to get a Krabby Patty so he could make more money. It took a long time to explain that, because in the world of autism, this plot makes no sense and doesn't even register. Curtis has seen entire movies like Shrek or Madagascar several times before finally asking us the most basic plot line questions. So many things are going over his head all the time.

Now translate this into the school setting. When the teacher is speaking to the class, Curtis likely gets lost quickly without some help. Any number of words or phrases confuse him and then you've lost him. And if he can't follow the trail, he isn't going to pick up the path. Without the support he has now, he would need to be home schooled. Curtis is only now beginning to ask enough questions and eliminating those times where he doesn't understand something as just lets it go.  He looks like a normal kid and even manages to sound like one sometimes, but right now he can't do it on his own. He's making progress towards that, mostly because he's had years of early intervention that have developed his speech and ability to interact with and befriend other children and he's had the support he needed to be successful in school. Support we fully intent to ween him off as soon as he can handle it.

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

I'm inclined to agree with Ms. Shery. The article also mentions autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. together to lump them into one category, though there are pretty clear differences between my son with classic autism and someone with Aspergers.

Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

Sure hope my kid isn't too "cognitively able" to get the services that have allowed him to make so much progress thus far. Or any other autistic child who would greatly benefit from early intervention and similar services.

I'm willing to admit could be a flip side to the argument. There are probably some kids who have developmental delays by means of flat out parental neglect or other factors and they aren't truly autistic. Who knows. I have no idea what percentage of the autistic population this comprises but I doubt it's a lot.

People on the spectrum are typically diagnosed as such because their brains are wired differently and I would hope the specialists who are diagnosing autism know the specific behaviors. I believe for the most part they do. We have a terrific specialist who has seen Curtis every since months since his diagnosis and is always charting his progress.

The continued rise in autism and Asperger's probably has more to do with recognizing signs that have existed for years but around a lack of awareness that now exists. These kids need intense support at a young age in order to unlock their potential and my hope is that they continue to get it once this redefinition goes though.

Greg, Dad

We realized around the age of 12 months that Curtis was not like other children. He would not respond to his name or make any eye contact. He would spin the wheels on cars instead of rolling them. When we gave him a bag of letters to spell words he made patterns of the letters or laid them out in order. Curtis would not point, wave, and showed no inclination towards speaking.  When Curtis was diagnosed with Autism around the age of 2 years, his mother and I were not exactly sure where to turn for help. Coming to terms with the fact your son (or daughter) has autism is not easy. The developmental disorder is fraught with uncertainty from how your child will develop to how he got the disorder in the first place. Instincts tell us to blame, worry, and fix the problem. It's frustrating to discover the lack of real answers pertaining to autism.

What I really wanted was a projection. You say he is ranked here on the autism spectrum so does that mean he can have a career or make friends or is none of that going to happen? What I've found is that the progress and changes are unpredictable and changes happen fast. I've gone from wondering if he will have the ability to sort silverware as an adult to expecting him to become an engineer (he says artist). My advice to parents of autistic toddlers is expedite your grief over the diagnosis and get to work. Early intervention therapies have been instrumental in our son's progress and have allowed us to unlock his potential but they are not without red tape. If you feel there is a stigma attached to the autism label you're going to have to get over it for the sake of your child. There is simply no benefit to waiting. if you suspect your child has autism there are simple screenings which can confirm or deny the symptoms. If you have already been told by a specialty physician that your child has autism, it's time to get to work.

Greg, Dad

ADHD diagnosis
     Up until Curtis was about 5 years old, he had absolutely zero safety awareness.  He would run full speed into the street and had no regard for how far away from his adult companion he would go.  Despite countless hours of work by his in home support specialist, we were finding it impossible to get him to respond to the simple directions "stop, no, and wait."  I lived in constant fear that Curtis would jump into a body of water, run into a busy street, or fall off of a cliff before he entered kindergarten.  In addition to this fear for his safety, I was also concerned for his development aside from the common delays associated with Autism.  He seemed incapable of sitting for more than 3 minutes, which really compromised his fine motor development, as he could not sit long enough to learn how to hold a pencil, use scissors, and do puzzles.  And he would run around the house for hours on some days and even his most preferred activities couldn't grab his attention.  Again, his in home support spent countless hours using strategies to try to calm his body, but nothing worked for long.
     One day we were walking out of the Children's Museum and his hat flew off his head.  I turned around to pick it up and when I turned back around, Curtis was running full speed toward a busy Portland street and had no plans of stopping.  I ran, screaming, "Curtis, STOP!" but he just laughed and ran faster, thinking we were engaged in a game of chase.  Thankfully, I caught him about a foot from the street, but that was the day I knew he had to be tested for ADHD because his brain was not able to tell his body to stop.
     Once the results came back showing Curtis had ADHD combined type (hyperactivity and attention deficit), we had to face the tough decision whether or not to medicate.  Due to the extreme safety concerns, we decided to go for it.  We had to try 3 different medications before we found the right one for Curtis.  My advice to parents is not to take the first med you try if it has too many side effects.  Every kid is different.  The medication helped Curtis learn safety skills and his fine motor skills skyrocketed because his brain could finally slow down enough to work through those skills.
     Now we use meds to get him through the school day, but generally, he can maintain himself without them on weekends and vacations.  When we go to visit family or a birthday party where there is a lot of stimulation, we can rely on the meds to help Curtis control his body.  He is more successful in certain settings with it and with that success comes pride.  And he hasn't been "smashed up like a pancake" by a car (as he would put it.)

Laura, Mom