Sunday, 25 August 2013

The Tightrope That Autism Parents Walk- Treatment Choices and Conflicting Ideas

It is so difficult to know what is right.  Or if there even is a “right” thing.  I am talking in terms of treatments for autism.  It is true that for many medical conditions there are multiple modalities of treatment available.  But autism is unique in the fact that a “cause” is not yet agreed upon.  At all.  We have so many theories- genetics, environment, gut imbalances, vaccines….and then a million other ones that I can’t even begin to name. 

I remember when I had Jack and was still in the hospital.  I felt so conflicted- the lactation consultant wanted me to offer Jack nothing but the breast, the pediatrician told me he needed a pacifier for “non-nutritive sucking”, and the OBGYN that I had at the time told me that I was starving him by not offering a bottle, and that that was why he didn’t stop crying for 24 hours straight (I went to a different doctor for Nate).  Between the contradictory ideas and the hormones I could have punched someone in the face.  I remember thinking, how can it be that complicated, and how can professionals who do this on a daily basis come in here and offer their very different ideas to a brand new mom?  Don’t they know how confusing it is?  Eventually we found our way- pacifier free the whole time, no bottle until 4 weeks old, and once my milk came in, things were a bit better.

And I thought THAT was complicated.  Navigating the available treatments for autism is like walking through a minefield.  We have the behavioral approach, the traditional medical approach, and the “MAPS” or “DAN” approach.  And they are night and day different.  Do we choose ABA solely?  Do we medicate?  Do we give supplements and change their diets?  Do we dress them in weighted clothing and spin them in swings for sensory input?  Who is right?  Thus far, I have chosen a combination of all of these, and honestly, I am pretty comfortable with that.

I think I may drive the boys’ practitioners  a bit crazy.  I know our “DAN’ doctor was like, really, a drug trial- when I told him I had enrolled Jack in his current study.  And when I spoke with the study physician from NIH on Friday and asked her about restrictions on other treatments while on study- she said, why, there are no other treatments known to actually help reverse autism, only medicines to help control behaviors.  Which is true in traditional medicine- ADHD drugs, SSRI’s, risperdol- it’s all symptom management.  I told her he was on B-12, the mitochondrial cocktail soon, the fluconazole, flagyl, etc.  She told me that none of this should matter as it’s not affecting his brain chemistry.  I get where she’s coming from, she even said that St. John’s Wort would not be ok because it could alter brain serotonin levels.  And Nate couldn’t take memantine, the medicine Jack is currently taking- risperdol and stimulants, etc would all be no-no’s.  Fortunately, we have not gone down that path with Nate, as there is no need.  He does not demonstrate any aggressive or dangerous behaviors at this point, thank God. 

So while it annoys me a bit that she didn’t acknowledge that anything we are doing is worth squat, it also works out to our advantage.  Because while she doesn’t consider these treatments worthwhile, she also doesn’t see them as a threat. 

As you know, I am a nurse.  And before I was a nurse I studied biochemistry.  Even though this is an extremely emotional process for me, of course, I do approach treatments from a very scientific perspective.  If I read about something, and the mechanism of action makes sense to me, and it isn’t potentially harmful, I am willing to look into it further.  The bottom line is that the research physician is correct.  Most of the interventions that are being used at this point do not have any “double blind”, formal studies pointing to their effectiveness.  However, many of them do not have any such studies pointing to the idea that they are useless either.  Don’t even get me started on vaccines.  Yes, formal research has indicated that vaccines do not “cause” autism.  But few to no studies have been completed looking at the current theories of how vaccines AFFECT children who already have or are predisposed to developing, autism.  In my opinion, walking around saying vaccines have no effect on autism is just as irresponsible as saying that they cause it. 

What many people fail to realize is that autism research is really in its infancy right now.  I don’t think that anyone has the answers, but many people have many different theories, and because it is an emotional issue, debates become very heated.  We are not at a place where we can point to one treatment, or even cause, and say “Aha!”.  Therefore, my choice remains that I will not put all of our treatment eggs in one basket.

1 comment:

  1. Hi. I'm with you, thanks for expressing my own feelings, Jenny.

    In our case,and I know we are not alone on this, it was the vaccination that triggered the problem, it just can't be a coincidence that so many parents report the same thing worldwide and it infuriates me when somebody denies it, it's like calling me a liar, I mean, why would I lie about such thing? It's 1 in every 80 now, I just wonder when will they start really looking into it. when it's 1 in every 2 ? = /