Friday, October 9, 2015

Stop calling it Autism

We have got to stop calling it autism.  Calling it autism not only makes the parent stop searching for answer, its makes the provider stop as well.  I can't tell you how many times a particular symptom gets dismissed because "its just his autism, he's wired differently". 

Two such instances about Dominic come to mind:
The First, an OT years ago came out of session and told me that Dominic had developed a new stim sticking his fingers in his mouth.  I looked in his mouth and removed the food that was stuck to the back of his tooth and the stim went away.  Imagine that.

The second was when our ABA providers quietly told me that he'd started to touch himself on the genitals inappropriately.  Turned out his underwear was too small and once we went up a size (and switched to boxers), that touching went away.  Again.. imagine that.

And because he has the autism label, the first place both of those therapists went was - its just a new feature of the autism.  We need to start forcing medical providers to actually get to the bottoms of our issues.  And Every single one of our kids is going to have a different answer.

Is it Pyroluria (a metabolic disorder that leads to "incredible hulk" style rages and can be treated with B6 and zinc)?
Is it a traumatic brain injury that requires specific tailored therapy to heal?
Is it a bacterial infection that has led to an autoimmune illness and psychiatric symptoms (PANDAS)?
Is it mitochondrial disease?
Is it Lyme disease?
Is it parasites?
Is it heavy metal toxicity?
Is it a food allergy?
Is it seizure disorder?
Is it early emotional trauma?
Is it gut dysbiosis leading to either constipation or diarrhea and pain?
Is it not enough stomach acid to digest food?
Is it adrenal fatigue?
Is it sluggish / blocked metabolic pathways?
Is it toxicity?
Is it .....
Or is it 3+ of the above / all of the above / none of the above?

Here's what ICD10 says about Autism - which is incredibly frustrating
F84.0 Childhood autism
A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression.

Autism has become a diagnosis of "well we don't know what else it could be so its this".  Because doctors don't look for weird stuff first.  Its our job as front line in this fight to work to change that.  To insist on testing to rule in or out all of the above conditions (and more!!! I'm sure I'm leaving some out) before slapping a permanent label on our kids that says "don't look any deeper, we're just wired differently"

It's so easy to get sucked into the latest and greatest treatments on facebook and at conferences. I've done it many times.  Occasionally we have  had amazing results - usually either nothing or it makes him worse.  And some of the things - including footbaths - that Dominic has soared on, I know other kids who haven't done well on.  We know that our kids are NOT the same.  They don't come to Autism with the same injury.  And so the way to fix them is never going to be exactly the same.  Yes there are often things that work for MANY of them, but there is nothing that works for every child. 

We need individualized medicine in a world of cookie cutter 5 minute appointments with doctors who don't have time in their day to think outside the mold

1 comment:

Taralee Duffin said...

Love this, thank you for being an inspiration!