Saturday, March 17, 2012

My Unscientific Theories about Autism Spectrum Disorders (ASD)

Last weekend when I logged onto Facebook, I found waiting for me a message from my husband's uncle.  After reading my blog, he did some research and found the same things I learned a few years ago-- that doctors and scientists have plenty of theories but aren't really sure what causes autism and ASD (Autism Spectrum Disorder).  He asked me a question that I feel is worth addressing here, because I have wrestled with it often.  He asked what my gut instinct as a mom told me about what caused our daughters' ASD.

Oh dear lord, where to start?  This question takes hold of my brain sometimes and pesters me-- harasses me-- and leaves me feeling a whole bunch of unpleasant things that include exhaustion, exasperation, guilt, anger, and resentment.  I used to ponder this idea a lot more when the girls were younger, but less as time goes by.  Whether this is because I care less about figuring it out, or that I spend my time doing other things, or that I have accepted that the why doesn't matter much to my situation, is beyond me.

I'll start with the whole "vaccine theory" of autism.  I personally never felt that vaccines triggered anything in my girls except copious amounts of tears and drama.  If vaccines did have a part in my little ladies' current situations, it had to be the very first shots they received.  I started noticing before the age of 6mo that my Princess's drummer was playing a different song from most of the other infants I encountered.  It wasn't until much later that I realized Birdie might be tuned into a slightly different station too.  (This was probably due to the fact that play dates were a nightmare with Princess, so Birdie didn't get many of them either, being a twin and all.  Compared to Princess as a baby/toddler, Birdie seemed like the norm and she was really my only comparison.)  I had to dismiss the vaccine theory lest it would drive me crazy-- I had no proof it could be true.

By dismissing the vaccines as the culprit, I felt I had no one but myself to blame for my girls' plight.  I would worry to the point of tears and nausea, certain that I had screwed up my attempt at motherhood before my children ever arrived.  I went through every day and hour of my pregnancy.  I got out the calendar and tried to remember everything I did in the days before I realized I was with child.  I had several weeks (3 weeks and 1 day, to be exact) in which my little darlings were growing inside of me and I had no inkling.  Was I out partying with my friends during that time?  Drinking?  Inhaling cigarette smoke?  Getting too little sleep?  Eating horribly?  Not exercising enough?  What had I done to cause this "malfunction" in my babies?!  I. Wanted. To die.  I felt I had failed my girls and I had no path to redemption.

I quietly talked myself in and out of depression about this for several months.  My husband was in and out, travelling for work, and I know that for awhile he thought maybe I was teetering on the brink of Lala-land.  But, finally, logic prevailed.  I told myself, that while maybe something like this did have a small influence on my kids' development, chances were slim at best.  Plenty of normal children are born to mothers that do all sorts of unhealthy things throughout their entire pregnancy!  I had to play the odds on this one and believe that there's more to developing autism than just a mother's ill-timed beer buzz.

Could autism have a genetic component?  Is there something in my DNA (or my husband's-- let him take some credit too) that predisposed them to ASD?  I definitely believe DNA plays a role.  I know I have some spectrum-like tendencies.  For instance, I have my and my husband's debit card numbers memorized, as well as all our library card numbers.  I have a scary-accurate timer in my head and frequently find myself entering the kitchen to "check on" something in the oven just as the timer beeps.  I hate unexpected schedule changes (as do my girls), to the point that it can literally ruin my day if I am counting on an event to happen.  So was there something inside of me waiting to be expressed-- and seemingly exaggerated-- in my children?  Probably, but that can't be the whole story.

(Now I know it sounds like I'm back to blaming myself again, but if I know anything at all it's that your DNA is just the cards you're dealt.  You cannot be blamed for that-- it just gets too stupid.)

So what is the whole story?  Obviously there is more to it than DNA alone... I mean, look at Birdie and Princess.  Identical twins (we paid for the test to prove it) that are as different as night and day-- both in personality and in the expression of their ASD.  So what else could it be?  Maybe the position each had in my womb?  Birdie, who would probably be classified as having Asperger's on her worst day, was perfectly head down and ready to exit for the last month or so of gestation.  Princess, whose autism is much more pronounced, was jammed up in my ribcage during that time.  (You could feel the ridges my ribs left in her head when she was born.)  Did that crowded position keep something vital from growing or connecting in the proper way?  Did she get exposed to different nutrition or blood flow?  Maybe.  I'm not a scientist or doctor, after all, and even they can't agree.  Whatever it is, there is certainly some sort of environmental element to ASD as well, but everyone that is telling the truth has to admit they are just guessing at this point.

Now here is where I am going to lose some of you.  You're going to think I really did venture into Lala-land and no one bothered to tell me.  Oh well.  I think in my heart of hearts that maybe-- just maybe-- autism is an evolutionary step toward our future, or at the very least a product of our society.  I hear you over there thinking: that crazy woman is grasping at straws-- trying to feel better about her weird kids by making their special ed status "extra-special".  That may be true-- I am a mother, after all-- but I can't help but consider the fact that we live in a society where we engage in most of our social interaction through a computer, with little face to face contact.  Most autistic children I know feel at ease with the gadgets and gizmos that link us to one another through cyberspace.  What's more, online these same kids are anonymous, and therefore, they are just like all the rest of us-- plugged in avatars of themselves, free to express what's on their minds with more ease than they could in person.  If the rise of technology for social interaction isn't related in some way, than it is a very happy accident at the very least.

With the number of autism diagnoses on the rise, I am sure that the research being done is only going to increase.  Maybe one day I won't have to guess.  If I am honest with myself, though, I'm not sure I really want to know the why.  I'm love my Princess and Birdie the way they are, and ASD is a part of them.  Would a "cure" cause changes in the cores of these beautiful people?  Who's to say there's anything "wrong" with them anyway?  Maybe the song the drummer plays is changing and we are the one's that are now out of step.


  1. You have such a gift for expressing your thoughts. So glad you're writing this blog.

  2. Seems to me that, even if something you did contributed to their ASD, if you didn't and couldn't have known about it, you can hardly blame yourself. Hopefully you've gotten to that conclusion already.

    Anyway, those on the spectrum do tend to have certain mental strengths. And while I don't think autism is the evolutionary future for our whole race, having a clear strength like that can prove very valuable in an economy where specialization (aka division of labor) is also a strength.

    While we've been trying to get people to accept and celebrate our natural variations for decades now, I think what might tip the balance is the internet. Just as introverts like me are now finding it a haven where they can interact socially on a large scale without having to follow the traditional extrovert model of interaction, those on the spectrum will find that on the internet, you can do awesome stuff and have it appreciated without everyone having to work to look past your "condition". It's always going to be important to be able to interact with people - that's part of what sets humans apart. But we may become more accepting of different methods of doing that as we start to appreciate the new contributions this allows.

    My unscientific theory is that the rise in ASD is due almost entirely to awareness - it's always been there, it was just diagnosed as or masked by something else, or the person was just considered a little odd, depending. If you look at the numbers, the rise in autism diagnoses has been paralleled by a similar drop in mental retardation diagnoses. It's one of the theories floating around, and perhaps one day we will have enough of a scientific understanding to vindicate it. The brain is so incredibly complex though, like the immune system, or the weather, that I'm not sure we'll ever really get a scientific handle on variations like autism or even introversion.

    1. Thank you so much for your thoughtful response!

      I agree that there are many, many possibilites and contributing factors to ASD. The main conclusions I have come to are that we are all different, we all have strengths, we all have obstacles, and we will all be fine. I also agree with you that the internet has opened doors for people that were once shut and it is a fabulous thing.

  3. Really interesting points! I think that like anything else, autism is probably some kind of combination of genetics in addition to other factors that can't quite be pinpointed or explained. I really liked your ideas about computers and our society. I have never heard that theory and it's interesting, at the very least. I think it's great that you celebrate your children for who they are and you don't let autism define them. Great post!

  4. I have believed for years that my sons Autism is either an evolutionary step that we are blessed enough to get to witness or its caused by the shots. I now have come to the theory that BOTH are tied to it. I am not a doc I just play one on the innerwebs but after researching cases and watching my own son I believe that there a link between the evolutionary step involved with what we call autism and the shots reacting to it. Which is why it doesnt manifest the same in all of us.