1 in 68... a 30% increase! Careful, America, it's coming for you!
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.
Thursday, March 27, 2014
Monday, March 3, 2014
To be honest, I didn't want to go. We had just finished two straight days of rain and this was supposed to be a beach party? On the first day of March? I didn't want to drive for an hour just to follow the boy around making sure he didn't drown or break something. I thought I just didn't have it in me.
But the boy (and baby girl) wanted to go. We complain all the time about how we are never invited to birthday parties and outings and playdates, and here is a family reaching out to us. A little girl who (continually) reaches out to Jack and, truly, loves him. I would be the biggest hypocrite in the world if I cancelled.
So we dressed (it was a 50s theme beach party), loaded up the car and headed to Malibu.
The party started nicely. We had some food. We had some drinks. Jack interacted with his peers. He even took (and enjoyed) the Hula lesson. And he asked me over and over again if he could go down to the beach. And it was finally time.
Now, for those of you not familiar with Southern California beaches, Malibu is a bit different. It's not a huge expanse of sand and sunbathers. There is a little bit of sand, and lots of rocks. Lots of tidepools. Usually overcast. And tons of surfers.
So we made a break for the small stretch of private beach owned by the family that owned this particular house. At first, Jack was a little obsessive helping some other (older) boys clear the seaweed from a path that led to the water. They gave him a shovel... enough said.
Then Jack (and his mom) went to the shoreline... leaving the din of the party behind.
Perhaps leaving the din of life behind as well.
And Jack did what so many seeking solace have done before. He stared at the sea.
Mom and I took turns showing Jade things in the tidepools and playing in the sand. The other was able to socialize with the other adults and kids at the party.
The whole time Jack stood motionless... hypnotized by the motion of the sea.
And Jack watched. I tried a few times to engage him. I asked him if he wanted to see the starfish or crabs that littered the rocks. He politely declined. He told me he wanted to be alone.
And I obliged.
And he stared for around 45 minutes... a lifetime for an ADHD child.
And he stared and thought and thought and stared.
Jack loves the water, from the ocean to the bathtub. From the rain to a waterfall. He loves the simplicity. He loves the repetition. He loves the expanse. He loves the embrace.
I imagine he stared off thinking of faraway lands and adventures. I imagine he thought of all the animals that live in the sea and their stories. I imagine he thought of all the men that had stood in that very same spot over thousands of years staring at that very same sea. I imagine he thought of the women pacing the beach waiting for their husbands to return.
And, for some strange reason, I imagine he thought of home.
45 minutes is a long time to be silent and stare at the sea... it's even longer to be silent and stare at someone staring at the sea.
Jack finally broke his silence and informed he wanted to learn to surf. I told him we could look into it. There was an impending silly string fight that was being prepped.
He participated, engaged, interacted, and thrived. He went upstairs to sing happy birthday, eat cake, open presents and play minecraft with another boy. And he was great. And he had fun. And he belonged.
While the silly string fight ensued, I stole a moment to myself and tried it.
I stared at the sea. I thought of all the chaos and energy of life. All the activity of the world behind me.
And I did what so many before me had done. I stared at the sea...
And in that brief moment, just once, just for a second, it all went away.
It was immaculate. It was celestial. It was providence.
And for the first time in what seems like years...
I got it.