What’s Love Got to Do With it?

It's been ages since I've posted anything on this blog.  I usually just post on my facebook page these days.   This one has been on my mind for awhile.  I'm just finally writing it down. 

The question comes up every now and then on Autism Facebook pages – If there were a pill that could cure your child’s autism, would you have your child take it?

Some people say “YES!” Some say “NO!” Some say “I’d like to cure some variables, but not others” and some say “It depends - would there be any side effects?” All legitimate answers

Then there’s the answer that gets me “I love my child just the way he/she is.”

The implication is that anyone who wants a cure for autism doesn’t love their autistic child.  WRONG!!! The other implication is that the purpose of a cure would be for our children to be loveable to their parents.  WRONG AGAIN!

For those of you that wouldn’t want a cure, I get it.  Though I’m not one of your tribe, I can truly imagine that there would be a ton of things I would miss if Naomi’s autism were to go away.  I imagine her energetic, happy dance wouldn’t be significantly toned down or may disappear altogether if there were not autism.   Her taste in wacky hairstyles and funky jewelry would change.  In many ways she’d lose her innocence, and we’d probably lose our closeness.  She’d probably ditch me in favor of hanging out with friends at the mall. There are probably many things I haven’t even thought of that would change if Naomi’s autism were to disappear.  I would miss many of them deeply. 

 

But here’s the thing - I’m not the center of Naomi’s universe. – A mother’s love is a wonderful thing, but it’s not the be-all and the end-all.  I love my mother dearly and I am extremely grateful for her love, support, home cooked meals and financial assistance. But was her love all I needed to offer me a satisfying life?   In a word “No.”   When I look back over my life thus far, my mother wasn’t there at the most thrilling moments.   Don’t get me wrong, she celebrated with me and is still a wonderful audience for my rants and stories.  But in the moment itself, she usually wasn’t there.  The most thrilling times were times when I was at my most independent – allowing my inner guide to be the leader – taking risks while no one – at least no one who had any particular concern or interest for me–  was watching.  I want this for my daughter. Not because I will love her more if she has these experiences, but because I believe it will improve her quality of life.  Several things that we generally refer to when assessing quality of life are impeded by her autism - a romantic partner, a satisfying social life,  a good job with good pay and significant control and choice over their environment as an adult, to name a few factors.   In general, loving her will not make up for the absence of these things in her life.   I still have hope.   I realize there are many autistic people with a high quality of life by anyone’s measure.  But at this point in Naomi’s life, any reasonable person may see that autism is a huge obstacle to obtaining the quality of life that we all want.   I want a cure for autism because I love my daughter, not in order for me to love her.

And even if my love were all she ever needed… Some day I’m going to die.

Respecting People Just Because They Are…

“Did you see that pink letter?”  My hair dresser asked while washing my hair.  Of course, she was talking about the infamous hate mail that was sent to a family of a child with autism in New Castle, Ontario.  She continued. “Obviously, whoever mailed it hasn’t heard of people like Temple Grandin or John Elder Robison,“  I just acknowledged how awful the letter was while ignoring the reference to Temple Grandin.    It was another example of something that I’ve been hearing a lot lately.   When hateful and hurtful things are said about people with autism, some think the best way to defend them is by bringing attention  to the intellectual and accomplished people with autism , rather than simply pointing out how all people deserve respect and it’s reprehensible to deliver vicious, nasty insults.

In various cases when people with autism are put down in one way or another (often by using the “R” word),  I’ve seen many respond  with statements like “My son is autistic and he has an IQ of 180.”  “My niece is autistic and she is going to college in the fall.”  And even “You are the one who is retarded! ”  I want to ask these people, “So if your son had a low IQ and your niece didn’t make it into college, would these nasty, hateful things be any more acceptable?” “By labeling someone who is vicious, hateful and shallow as ‘retarded’ aren’t you really insulting those that had a diagnosis of being ‘mentally retarded’ and therefore, adding insult to injury?”

 If there were no Temple Grandin and no John Elder Robison, that pink letter would be no less offensive.  I understand the desire to recognize the achievements of people with disabilities, but in the face of hateful attacks, this is not the time for one-upmanship.  We simply need to stand together and say “This is wrong”.   We don’t care how many or how few accomplishments can be referred to, it’s still wrong.  Making it about intelligence levels says “Hey, it’s justified to talk about some people that way, but not about  us!”  Nobody deserves to be referred to so hatefully, regardless of their IQ, their level of education, or even their lifetime achievements.  People deserve respect just because they are living, breathing beings.