Thursday, February 08, 2007

1 in 150

WASHINGTON, DC (February 8, 2007) -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January, 2004.

Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."

Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."

These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies) . According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.

As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were eight years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.

An additional eight sites determined ASD prevalence for children who were eight in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.
What does this new number mean? If your life has not been touched by autism yet, it will be. Either in your own family, or your neighbor's, your children's classmates, your coworker's, someone that you know will have autism.

If children were going blind at this rate you can believe the government would have done something by now. Let's pray that the Combating Autism Act is just the first step.

Periodically, people praise my commitment to the girls, to autism.
While I appreciate their kind words, and I really do, I must say that as a parent of children on the spectrum, I am not terribly unique. I interact with so many parents of children with autism, I feel confident in saying that you will rarely meet a more dedicated group of people in your life. With little support and guidance, they devote themselves to forging a path towards knowledge and understanding despite the incredible obstacles that stand in the way of finding help for their children and their families.

The release of such staggering numbers naturally lead people to ask, "Why?" And burgeoning distrust in the medical profession (largely due to the insidious behavior of insurance and pharmaceutical companies, IMO), leads reasonable people to wonder about possible misdiagnoses of the disorder. To that I respond:

he way autism is diagnosed has not changed in decades. "Better diagnostics" does not account for the increase in diagnoses. More autism is being diagnosed because there is more autism. Period.

Because the red flags for autism are more thoroughly understood now, children are being identified as at risk for autism or as autistic younger everyday. I wish Abby and Emma Jean had been "labeled" at fourteen months. If we had started interventions then, who knows what heartache we could have avoided, not to mention what their prognosis could have been now.

FYI, in families where a sibling has already been diagnosed with autism, children as young as a year are being flagged.

"But labels are potentially damaging to children. They internalize the label. Doesn't that indicate we should reserve labeling until a diagnosis of autism is clear?"

Ahh labels. Personally, I believe they only have as much stigma as people allow them to have. I don't worry over labels, nor do I go out of my way to keep the girls' autism under wraps. To me, doing so would only permit people to remain ignorant of the many faces that autism wears. When people say to me, "Well your girls don't look autistic!" That just proves their ignorance on the subject. I don't mean that in a critical way, it just demonstrates how limiting labels are when they are only applied to the most severe cases.

"But is autism a real disease? Why is it called a disorder? It must be psychological."

Autism is considered a disorder.

Disorder ~ A disease is any abnormal condition of the body or mind that causes discomfort, dysfunction, or distress to the person affected or those in contact with the person. Sometimes the term is used broadly to include injuries, disabilities, syndromes, symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts these may be considered distinguishable categories.

Disease ~ An abnormal condition in which its physiology, morphology, and/or development is altered under the continuous influence of a pathogen.

In other words, within a disease there is illness, while within a disorder there is a disruption. Does that make sense?

There is strong evidence of a genetic component to autism, in MOST cases.

There are cases of environmental "autism." Autism looks a lot like mercury poisoning. That said, there have been great strides in isolating the genes that may be the genetic markers for autism.

One reason I believe there is a greater incidence of autism diagnosed now is that formerly, many autistics would have been diagnosed as MR. Many still are, because MR is diagnosed via cognitive testing and most of those tests rely on measures of verbal communication performance. Many autistics never learn to communicate verbally, or through sign, but when facilitated communication is applied, they end up being recognized as having average, if not above average IQ's. The woman profiled in "Autism is a World," is a perfect example of this.

"Children deserve the chance to develop before being saddled with some label. If the intervention used to correct autism's harm are the same, with or without a label, then why risk it?"

Well...first of all, why was a child who was labeled autistic suddenly freed from the label? Because they no longer meet the educational criteria? Frankly, from a school's point of view neither of my girls need speech therapy. That is because by their criteria, my girls are capable of articulation and on the surface, understanding verbal communication. But, they struggle tremendously with the give and take and nonverbal understanding of communication that most people take for granted as being understood, especially with children who look so"normal" and seem to possess so much knowledge and comprehension. They still need speech therapy. Not like a child who cannot speak at all or struggles with articulation, but they still need it. Will schools provide it for them without a dx? No.

Socially, schools base needs on a baseline that centers around independence. Are my girls potty trained? Yes. Can they get dressed on their own? Yes. Can they ask for help? Yes. To the latter I can only respond, "But will they?" Do my girls understand the give and take of the play ground? Not without help. Do they "get it" when they have annoyed someone with random, one-sided conversation about their favorite color, number, or wheelchairs? No. They need social skills help. Unlike typical children who learn from unsuccessful interactions with their peers, mine don't, not without direct and repeated intervention and instruction. Does this matter? Hell yeah! Have you ever encountered adults who don't know when to let something go? Who seemingly randomly volunteer too much information? Who bore you to tears on a subject you could care less about? These are ongoing, real life issues that people with autism struggle with and because sometimes their disabilities are "hidden" and they appear functional, they do not get the help they need to truly operate in society as successfully as they might if only they had some help. Unfortunately, without a diagnoses, that help is out of reach.

As long as the understanding of what autism is and what it is not, is limited to "Rain Man," it is unlikely that any potential deficits will be addressed. The most crippling aspect that our most "high functioning" kiddos face is not what others think of them, but rather what they think of themselves. Without an understanding and support for why they are the way they are, how can they possibly make the most of who they are?

Recently, how autism is diagnosed on a scale was explained to me like this: Based on the CARS, a child who is not autistic would score a one or a two. A child who scores a 19 or a 29 (the cut off on the CARS is 30, I believe) is still autistic. They just don't meet the criteria of the CARS.

Most schools use a child's CARS score to determine whether or not the child qualifies for autism services.

I want my girls to know that they have problems understanding the world around them and even more importantly, that the world around them may have problems understanding them. Without being able to name that, how else can they expect to distinguish themselves from some regular Joe who is just lazy about listening and sloppy in their interpersonal relationships?

Do you think, given someone with autism's deep and ongoing lack of understanding of how "typical" communication works, that without a diagnoses they are somehow aided or propelled to success?

No, when the autistic label is brushed aside or removed or denied, then their ability to differentiate between personal failure versus an organic deficit is removed. How does that help anyone? If as an employer you knew that the person you hired struggles with interpersonal relationships in the office, but you knew that the skills were present to enhance your business immensely, would you be more or less motivated to help them where they are weak so that they could ultimately make your business stronger? For the autistic person, when the label is removed because they are "high functioning" does that eliminate their interpersonal weaknesses or their technical ability? No, but it will cripple their ability to contribute, primarily because they will judge their abilities by their success, without regard to their organic weaknesses in the areas of nonverbal and social communication.


The only credibility that autism has lost with the surge of its diagnoses is its status of a rare disorder. The question is no longer if autism will touch your life somehow, but rather when.

Hear this, you elders;
listen, all who live in the land.
Has anything like this ever happened in your days
or in the days of your forefathers?

Tell it to your children,
and let your children tell it to their children,
and their children to the next generation.
Joel 1:2-3


Blogger Ashley loves Leo said...

Wow. This is by far my favorite Susan post of all time! Your take on disorder vs disease - brilliant!

Your take on life without a label, especially as adults was so compelling. Frightening and sad!

It makes me so sick to think of the countless undiagnosed that are older than our children, particularly adults that continue to live with no answers and not only have an ASD but have secondary disorders as a result of living with ASD with no help (such as OCD, anxiety, and depression).

My heart goes out to those that weren't as blessed as our kids (even though your girls and Leo could've used a quicker dx). And how about of those children that are moving forward in life right now, destined for chaos and no answers.

I look forward to the day that Leo can be mature enough to read your post. I'll be keeping it for him.


7:11:00 PM  

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