October 24, 2014

Please Stop Redefining Autism to Suit Your Own Agenda

So over at TMR, The Eagle wrote a piece on the heat that she has been subject to because she used the word “recovery” in relation to her son's autism.

“I always grew up believing the F-word was something we didn’t say. But it turns out that in the autism world, the R word is definitely the bad word.
It’s all raising its ugly head as I am releasing my book, which has a tag line of “A son’s recovery.” Whoa!
“How dare you insinuate your son doesn’t have autism anymore? Just because he’s functioning, doesn’t mean the autism isn’t there.”
“You can’t ever recover from autism. No matter how well you’re doing, you’re always autistic.”
These are just a few snippets from people who don’t know me or my son, or our story, but have literally judged the book by its cover.”

I think a huge part of the problem is that people have redefined "autism" to mean what they want it to mean, then project that onto what other people are talking about.

So let's review what “Autism” actually is.

"Autism" is a group of behavioral symptoms which include impaired communication, impaired social interaction, and stereotyped behaviors.  Feel free to review the full DSM IV criteria here.

You need those BEHAVIORS to get an autism diagnosis.  Conversely, if you no longer have those behaviors, then according to the definition, you can no longer be diagnosed with "Autism."

But when parents or those with the diagnosis begin to redefine it as an experiential state, or spiritual condition or a state of mind or an "identity," and then foist that definition on others, then the madness begins. They can insist that even when the behaviors are gone the autism is still there... but it is just their opinion and something that does not fit the actual definition of autism.

Don't get me wrong, I am all for those who wish to expand on their experiences as a person who has an autism diagnosis.  God knows how helpful it has been to me to hear from communicative adults with an autism diagnosis on what their experience is in giving me ideas on what might be going on inside my son's mind, but those do not define autism.

Nor do my son's experiences define “autism.”  Nor to his physical maladies that are tied to autism define autism.  Because the definition of autism includes none of these things... no experiential descriptions, no medical conditions, no biomarkers nothing other than OBSERVABLE BEHAVIORS.  It is narrow, and crappy and inadequate in so, so many ways, but it is what it is.  ONLY a description of behaviors.   And those who want to go beyond that description need to either lobby that the description be changed to include those experiential, spiritual and medical phenomena, or make up their own term to describe the version of “autism” that they are talking about, so it does not get confused with other types of “autism” or foisted upon people who don't actually have the type of “autism” that they are describing.

And while families and individuals might be guilty of redefining the condition and then asserting that others should then be subject to their redefinition, the medical profession is the worst.  Because it is the job of science to actually be systematic and exact in the language that they are using to describe conditions, diseases and disorders.

If I hear that “autism starts in the womb” one more time, I am going to... I don't know... retreat to my back yard and start blowing bubbles all day long in a catatonic starefest.

When you show me that a fetus can have impaired eye contact or trouble speaking or difficulty in forming friendships while still in utero, then you can say that you think “autism” starts in the womb.  I'd even grant you a conversation based on the idea that “autism” starts in the womb if you could show me some ultrasounds with the unborn flapping a bit or trying to spin.  But as it stands... autism cannot be diagnosed in the womb because the behaviors are not there and AUTISM is strictly a behavioral diagnosis.

From NPR:

“Brain Changes Suggest Autism Starts In The Womb
The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.
Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.
Organization of the cortex begins in the second trimester of pregnancy. "So something must have gone wrong at or before that time," says Eric Courchesne, an author of the paper and director of the Autism Center of Excellence at the University of California, San Diego.”

So many assumptions and leaps there... but this is what my mind immediately jumps to...


It would even be very helpful to families like mine if it did, because then we could check some brains out and see if they have these actual physical anomalies and know whether or not our children had “Autism” defined by those terms and if not, we could know that our children didn't have “Autism” and move on to other areas to look for answers,

But it doesn't... because autism is ONLY BEHAVIORAL SYMPTOMS.

And... oh yeah... They only looked at 11 brains and only 10 of them had the cortical changes mentioned so no... you can't define “autism” to include cortical changes.  Just like you can't define it to have GI distress, because not all kids with and 'autism' diagnosis have GI problems and just like you can't define it as a vaccine injury because some kids with autism are unvaccinated and just like you can't define it as “Rain Man Syndrome because not all these kids have super powers, or define it as “seeing the world in a different way” and on and on and on.

Repeating... Autism is a crappy, narrow, barely useful diagnosis based on 70 year old, outdated information and ONLY on... say it with me.... OBSERVABLE BEHAVIORS!

Put 20 kids with an “Autism” diagnosis in a room and you are going to get 20 different sets of associated medical conditions, educational struggles and (insert almost everything else about a child)

We need to stop thinking of Autism as a disorder.. it isn't.  It is a symptom set.  It is like a fever, and caused by many different things.  Do I need to even insert the list in here?

So if Evan McCarthy lost his Autism diagnosis because he no longer fits the symptoms, and has graduated to “weird,” stop saying he still has autism or that he never had it in the first place.  He had the symptoms to qualify for a diagnosis, and then later he didn't.  You don't get to redefine “Autism” to suit your agenda.

If I might be so bold as to recommend a course of action... I consider the optimal response to, “My son lost his autism diagnosis!” to be:

“Yay!  I am so excited for you that he is doing so well!  Congratulations!  Please let us know what worked for him or any advise he has so that we can see if it might be something to help other kids who are diagnosed with autism!”

Because I seriously cannot believe in this day and age that anyone is still under the illusion that “Autism” is one thing.  It is junk like this in 2014 that makes me want to get on board with those who want to dump the obsolete “Autism” label all together.

Update:  And two weeks later Jerry Seinfeld announces that he has autism.  My considerably cynical thoughts about that on Age of Autism.


Chad Pez said...

Thank u thank u thank u thank u thank u!!!
From the mom of a recovered kid, I agree wholeheartedly!

VMGillen said...

AMEN... this needs to be said again, and again, and again, until Autism gains an etiology. BUT: being a set of behaviours, and considering some neurological settings lead to those behaviours, I think the "in utero" explorations are worth considering. For example, lack of social connection may be caused be pre-natal exposure to excessive noise. Other symptoms are analogous to exposure to androgenous steroids (i.e. extreme stress to the mother, which releases adrenaline at key points of neural development).

Shannon Johnson said...

Ginger-- I love the way your mind works to break down these topics and make them so clear-- and funny in the midst of it being really crazy! Love you! Keep it up!

Autism-Daddy said...

Love this post!! I wrote a post a few years back that's similar to your symptom set/ fever analogy.

Check it out at http://autism-daddy.blogspot.com/2012/03/letter-to-parents-of-low-functioning.html

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