These are the cries of the new Center for Disease Control report on "Autism Prevalence" in America.
Initially, I simply chuckled at this number as scare-tactic propaganda. I mean, the CDC needs money, autism research/treatment needs money, our kids need money. I get it. If that ratio had gone down to 1 in, let's say, 100, the pitches for funding would have a tougher sell. I could already see Joe Congressman's response "but wait, the number is going down, so we don't need more money".
There was a pretty famous letter/speech written by Suzanne Wright (Co-founder of Autism Speaks) that was a "call to action" for funding Autism awareness, treatment, research, etc.(Here) that the blogosphere DESTROYED because it painted autistic children as helpless, or violent, or extremely disabled, or simply broken. "That's not my autism", "how dare she", and "Autism Speaks is a joke" was heard shouted from the rooftops.
"How can the head of the largest (by far) charity/organization be so insensitive and flat-out wrong"?
Because she wrote that letter/article to present to Congress for funding! She HAS to be an alarmist. She has to employ writing/speaking techniques and tools like... guilt, hyperbole, and fear.
Can you imagine if she had presented a speech/article for FUNDING that started like this: "Lack of autism funding is a major problem in America, but my daughter is doing great and is perfect the way she is"
Which may very well be true, but ain't gonna' sound many alarms as an issue that needs funding now.
Her now infamous letter was not written about my son, it wasn't written to me, and it wasn't written FOR me. It was written for funding... and I, believe it or not, appreciate that.
So, here we are today, with the CDC releasing a new, more alarming, approaching epidemic for Autism rates in the US. I do want to say that I believe these numbers are accurate, truthful, and even alarming. They deserve attention. They deserve awareness. They deserve funding.
They do not, however, deserve epidemic outbreak status. And, those of us that already live the life, do not deserve the propaganda.
***
When Asperger Syndrome was removed from the most recent DSM, we expected a HUGE increase in Autism prevalence... we just got a whole bunch of new "patients".
Even today, there are NO genetic markers for autism. Autism is a "collection of presentations of developmental disabilities/delays coupled with poor social skills". That's it.
It is diagnosed (varies State to State) by Physicians, Psychologists, School administrators, or State Social Workers (rarely by all four).
The presentation (or spectrum) is vast and amazingly subjective for the affected individual.
Yet we, the blogosphere, continually discredit all potential causes with "not my son" or "I never did that when I was pregnant" or "My other children are fine". We stick to our causes (whatever they may be) as the only possible cause for a spectrum of the affected. We look for people to blame, sue, or pay for it. We invite "science" in to the argument, only to discredit them when we don't like what we hear.
Perhaps we are looking at the wrong causes...
Perhaps it's time to invite "science" back in...
***
"A presentation of any developmental disabilities/delays coupled with poor social skills"
Maybe, just maybe, we should be looking at what causes those "developmental disabilities/delays"... because we often know.
Almost 50% of children with Down Syndrome have a co-diagnosis of autism.
45% of children with autism have seizures, or a seizure disorder (while the general population is around 5%)
Immune deficiencies (Jaundice for one) can cause "cause brain damage resulting in developmental disabilities/delays"
Fragile X syndrome (which is RARELY tested) can "cause moderate to severe developmental disabilities/delays"
Rett Syndrome can cause SEVERE developmental disabilities/delays.
Childhood Disintegration Disorder (or Heller Syndrome) causes SEVERE developmental disabilities/delays.
These are just a few of the genetic markers we can test for.
Is it possible that a child with severe ADHD might just develop poor social skills?
Is it possible that a child with severe SPD (sensory processing disorder) might just develop poor social skills?
Is it possible that a child with IBS might just develop poor social skills?
Of course it is...
***
We spend so much time looking for a cause for autism... Traffic, vaccines, absent mothers, food preservatives, cell phones, etc...
We KNOW the cause of several (if not most). But they aren't sexy. They are words like "Down Syndrome, Fragile X, Heller's, Jaundice, ADHD, Gastro-Intestinal issues, Rett's, or seizure disorders".
Autism in America has simply become an adjective, a replacement for "developmentally delayed". The affected are not afflicted with autism... they present as autism... and a presentation is not a diagnosis.
***
"So, Jaye, since you've got it all figured out, what are we supposed to do"?
The CDC number of 1 in 68 children are diagnosed with autism, should read 1 in 68 children present with autism.
The number is just as alarming. The number needs just as much increased funding.
EVERY child diagnosed in this country should see a Geneticist AND a Neurologist to rule out what are often treatable disorders.
The autism community needs to band together and fight for funding for research and awareness of ALL of these causes.
We are growing (obviously), and there is greater strength in greater numbers.
Far too often are children (including my own) being labeled "autistic" and we are contempt to raise them as such...
And we stop asking questions.
Never Stop asking questions.
Definition--> Cause--> Prevention--> Cure
You can't work backward in a logic chain.
Omg....a voice of reason this week! My son is one of the few I know was tested for Fragile X....Rhetts and a few others. When talking with other parents I can't believe how few had genetic testing done. He tested as not having any of those genetic markers, but still has Autism. I can't believe how few had extensive testing done. My son's diagnosis testing took a total of eight hours. I posted an article about a study the San Diego University just published that found changes in the surface of the brain. I was pretty much bashed for it by the anti-vaccination crowd. The ones I know are now blaming Rho Gam...peotosis...anything they can.
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ReplyDeleteI agree with this article. Our Son did not test positive for Fragile X, or any gene that has been directly linked to Autism. He does have MTHFR Mutation. 40-50 % of Americans have this, but I read that 90-98 % of people with Autism have it. It can cause someone to be low in Vitamin B12, Folic acid, and B6. These vitamins help the body detoxify. We will always accept him, but we look at Autism as something that gets in his way of living independently. There is something causing it. We always saw his potential. We also saw him lose skills for a while. The further we get through therapy, including diet and vitamins,the more we get to know him.
ReplyDeleteMy daughter was just diagnosed on the Spectrum Monday. We have not had any genetic testing done, was not even mentioned. However, we have had 6 months of therapy and then Saturday, a full days worth of psychological and intelligence testing. People often have a look of shock when I tell them she has ASD. She's too smart they say. She's so talkative, she looks at you when she talks. But she has so many issues, issues that only those of us close to her would see on a regular basis. Issues that really showed when she started public schooling. And I never knew about any of these possible genetic reasons. Jaundice is interesting. My daughter was basically a yellow orange from birth until a year old. She was constantly jaundiced and nothing made it better. Makes me wonder now. But she came out with major sensory issues. She screamed at every little touch or sound from the moment she was born. So many sleepless days and nights. I'm rambling now. *sigh* Thanks for this blod post however. I will look into the testing
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