Autism Has Not Made Me a Better Person, Is That Okay?

I often see blogging parents say that autism coming into their lives has made them better people.  I really respect and admire this perspective.  But I can't really relate to it.   I get that there are a number of good things that come out of a parent's experience with a child with autism.  I get that when this comes into our lives we acquire a new perspective.  I get that our children are true blessings.   I get that we find out who are best friends really are.  But I can't see autism making me a better person. 

I've asked parents how autism has made them better and the number one answer is "I am more patient."   This is a great thing, but again, it's not something I can relate to. I am more patient with my kid than if autism had not been a part of her life.  How could I not be?  It's simply a survival mechanism, because if you don't learn patience you really can't get through this with all your nerve endings intact.   I don't think I am a more patient person in general.  In fact, I am less patient with the rest of the world. When we are waiting in line and I know that my kid is revving up to a meltdown if we don't get on our way soon, I have no patience. When we are on the wait list to get services that my daughter desperately needs, I have no patience.  When the babysitter is late and we are going to be late for a theater performance that is the first I have seen in many years, I have no patience. Basically, I have more patience for one person: that's my daughter, the person with autism.  I have little patience left for the rest of the world.

The second most common answer is "I'm more compassionate."  Once again, it is a great thing, but not something I identify with.  I think I've always been a bit of a softie, so lacking compassion wasn't really an issue for me.  Like almost anyone, I rolled my eyes when listening to drama queens, but beyond that I've had a fair bit of compassion. I have learned to have more and more compassion for Naomi as I realize how complex and challenging her neurological condition is.  I have learned to have more compassion for people with neurological conditions of many kinds. When it comes to the general population, I am perhaps less compassionate.  I am considerably less tolerant of the trivial complaints that people expect me to listen to.   You're kid incessantly talks and talks and talks and gets way too many phone calls from the plethora of friends she has?  Gee that must be hard.   You got a hotel room that doesn't have the perfect view of the beach and you still had to pay top price?  Life is tough.   Your daughter is getting married and the church is booked for all the dates that you wanted.  Boo hoo!  You get the idea.  I shouldn't shame these people for the little complaints about the ups and downs of life.  Heck, I complain about little things myself.  Still, I measure way too many things against the autism measuring stick.  There are a lot of people with serious problems.   I hear about friends with cancer, a child with a debilitating and life-threatening illness, people whose homes are foreclosed upon and whose families have turned against them. Those people get my compassion.  For the others I often think "What I wouldn't do to have your problem!"  I have little compassion for people whose problems pale in comparison to an autism diagnosis.   A kid with lazy eye?  ADHD?  She needs braces and you don’t have insurance?  Go find another shoulder to cry on.   I just can’t give it to you.

Autism can take a parent’s life into an area they would never have dreamed of. Sometimes it motivates them to start a new autism-related career, sometimes it makes them more politically active and turned on to advocacy.  I admire them to find the time to pursue such venues.  I don’t know how they do it.  The drain on time and energy which are already in short supply makes that difficult for me.

I suppose I am more humble because of autism. There’s a lot of less-than-positive feelings that go with that humility.  I won’t go into them here.  Suffice it to say, they do not make me a better person.  I often feel guilty about this. I wish I felt like I was a better person for having autism in my life. I wish I could see it that way.  Believe me, I’ve tried.

At the same time, if I told Naomi  that I were a better person because of her autism, I don’t think it would make her happy.  Autism prevents her from a lot of things that I know she wishes she had in her life and it has caused her a lot of suffering.  Would she be happy knowing that it has made me better?  I doubt it.  I know that if I were in her shoes I would say “I’m glad that you are getting something out of it mom, but really, it’s not about you; it’s about me. I’m the one that autism is affecting! ”

I’ve learned a lot.  I’ve met some wonderful and fascinating people.    Still, I don’t think I am a better person.  For me, it’s a no brainer to think that I’d happily give up everything I’ve gained for the autism to disappear from her life.  In fact, forget losing the diagnosis, I’d give up everything I’ve gained and more for Naomi to have a true friend that she could play with.  If she could have that, maybe I’d feel like a better person.