Tuesday, June 18, 2013

The credit and the blame

In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion.  I would say almost no-one thinks that any more, thankfully.  Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault.  We didn't cause it.  We might not know what caused it, but it wasn't something we did deliberately or even indirectly.  We don't take the blame, at least on our better days.

I'm wondering, then, why so many mothers feel it is there job to FIX the autism.  We can accept we didn't cause it, that nothing we did made our kids they way they are.  The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism.  However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism.  We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children.  We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.

I am trying hard to not do this.  I'm trying to be consistent.  I know I didn't cause Janey's autism.  I don't know what did cause it.  And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism.  That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.

This is where my older son comes in.  He was also at one point, when he was very young, diagnosed with autism.  That was changed within a few years to an Aspergers diagnosis.  When he was 8, testing showed he no longer fell into the autism spectrum.  When he was 12, we stopped having him on an IEP at school.  Last week, he graduated from high school as valedictorian of his class.  He heads to Brandeis in the fall.  This is where I have to practice what I preach.  I don't take the credit for his "recovery"  I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him.  He did that himself.  It was what was meant to be.  I am proud of him, but I in no way at all take credit for him.  If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.

I believe in autism acceptance, mostly.  And I think that needs to mean an absence of credit or blame.  Janey is who she is.  She is a full, complete, complex person just as she is.  Talking about credit or blame makes her sound like a project, not a person.  The same holds true with William, my older son.  As tempting as it can be to feel we can really change our children, I truly believe we can't.  We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own.  I'm not quite there yet, in fully believing that, but I am working toward it.

1 comment:

mknecht24 said...

The idea that I can cure the autism has always been hard for me to believe. I WANT to cure it, but it would be like me curing a random cancer. We've been set up to believe that the autism is somehow our fault. So, yes, I agree with you. Let's just accept it at face value, manage the symptoms, and just love them for who they are.