Update: Congressional Hearing on Autism

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In case you didn’t know, yesterday was a big day for families who are dealing with autism.  You see, the U.S. House Oversight Committee held a hearing on the federal response to the rising rates of autism…from 1 in 10,000 cases of autism to 1 in 88, in just 20 years, according to the CDC. (By the way, that study was 4 years old and done on 8 year olds.  If rates consistently rise, the current rate for a child born in the last year is roughly 1 in 29.)

If you don’t call 1 in 88 kids (or, 1 in 29 kids) an epidemic, good luck.  Let me give a personal statistic:  In my kids’ school, there are 355 students altogether. 61 are on IEP.

SIXTY ONE.

I’m not saying they all have autism, and I’m not saying that all autism diagnoses are perfect, that there hasn’t been anyone ever misdiagnosed.  But to blame a rise from 1 in 10K to 1 in 88 ALL on misdiagnosis and genetics is untenable.   (It’s, ahem, “arithmetic”).  All the children I know with autism, all the kids I see in respite care, VERY CLEARLY HAVE AUTISM.  Not like they have some social issues and wouldn’t know it if it had been diagnosed.  More like, you can see:

  • they stim – rock, spin, flap, vocalize noise, etc.
  • they cannot speak
  • they scream or laugh inappropriately
  • they freak out over things that are inconsequential to you and me

And here’s something else:  That 1 in 88 CDC study?  Well, as discussed in the hearing, there’s no way to determine which of those kids had mild Asberger’s or low functioning autism or frankly WHERE on the spectrum they were.  So it’s 100% inconclusive (and unscientific) to blame it all on diagnoses when that was left out of the study.  Now, if they did that, and said well, 80% of the new cases are high functioning Asperger’s, that would be different but they did not.

The hearing ran like an inquiry – and good on the representatives who didn’t back down.  Answering questions were Dr. Alan Guttmacher, Child & Human Development Director of the NIH, and Coleen Boyle, Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC.  And if you’re wondering my opinion, their responses were utterly avoiding or incomplete.  Don’t even get me started on some of the others, because with all due respect to self-advocates who  think I’m hurting my child by treating her biomedically for behaviors, walk a moment in HER SHOES.  At this point, I don’t even know if she would ever have the skill set to self-advocate as an adult.  If she does, awesome, but I can’t yet see how to get there.  Just the concept that my whole family now sleeps through the night, after 5 years of wakeful torture, thanks to removing caseins, is all the proof I need I’m doing my best for her.

And FYI, to the people who suggest we stop funding research on the causes of autism, I say, “What???”  We still “don’t know” what causes it – although I think it’s more accurate to say we suspect, but there is no one smoking gun, which seems to throw the CDC into a tizzy because they can’t manufacture one vaccine for multitude of causes, I guess.  Ok, that was sarcastic of me, but the analogy always used is Down syndrome.  We don’t research “cures” for Down syndrome.  This is true. We DO, HOWEVER, RESEARCH THE NEGATIVE EFFECTS OF IT.  Right now, there is a drug in development to treat the very early onset Alzheimer’s that many, many people Down syndrome get.  And, we know what happens that brings about Down syndrome, even if we don’t have a specific cause.  So why WOULDN’T research be done to find out if there is some medical link to issues that people with autism suffer?  The number of children with autism who also suffer diarrhea / constipation are very highly correlated, and you agree bowel issues are medical, right?  And while anecdotes are not scientific, the sheer volume of parents who are reducing behaviors and bowel issues and cognitive dysfunction with special diets, supplements, homeopathy, and other therapies that are physical in nature is staggering.  And when I say reduce, I mean everything finally having a livable family life to off IEP.  That is, a total change in quality of life.

This hearing was 4 hours long, true, but I ask you to list to some or all of it, for me, for my family, for the family on your block that will undoubtedly have a child with autism – or does already and you just don’t know.  For all the kids struggling with autism in your faith community, in your neighborhood, in your social groups.  For the coworkers  you have who you’ve noticed every now and then staring at the photo of their child who isn’t looking up.  Autism is a big deal, and it’s probably coming to your family soon.  Here are details on how the Congress people stood upHere’s the C-SPAN link.

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