12/09/2012

A spectrum of autism parents

I recently wrote a post that might come off as hostile to NT parents of autistic kids.  So, I wanted to take a moment to clear up any misunderstandings and talk more generally about my feelings towards autism parents.

First of all, I've been blessed to meet some incredible and at-least-mostly-NT moms, including Elise RonanEmily Willingham, Me, Laura, StorkdokShannon DesRoches Rosa, K. Wombles, The Accidental Expert, and most of all, Brenda Rothman--whenever I read her posts on daily life with her son, I think, "If I ever had kids, I'd want to be like her."  They all have very different perspectives, but they share several things: a fierce love for their children; a willingness to advocate--both to fight for their children and to patiently explain them to others; and an empathetic open-mindedness towards learning from anyone who can help them understand their child better.  None of them hide the fact that parenting an autistic child can be incredibly difficult; they struggle, don't always know what to do, but do the best they can anyway.  I can't speak for their kids, but I think if they read their parents' blogs, they would be basically happy with what they found there.  And certainly, all these parents have considered what their children will think some day, should they read these blogs.

Most of these parents have reached a point of accepting autism, maybe even feeling positively about it, and are raising their kids to like themselves for who they are--autism and all.  Not all moms are like this.  My own mother has yet to reach this point, and as a result, my brother seems to have a conflicted relationship with his diagnosis and prefers to avoid the issue whenever possible.  Neither does my mother feel any need to take up autism advocacy as an additional job, explaining it to everyone who will listen online and in person.  Getting my brother's needs met in real life is enough for her.  Sometimes I wish she were more like the blogger moms I've mentioned, but on the whole, she loves him, accepts him, advocates for him, and is always trying to understand him better and parent him better.  And it seems to work: my brother has become less anxious, blossomed academically, developed a talent for improv, and won the respect if not the friendship of his classmates.  I would guess the majority of the moms of autistic kids out there are probably like her.  I don't think she does everything right, but overall, she's a conscientious mom raising a great kid.

What disturbs me is that there is another group of moms out there who have a vested interest in believing that their kids are incapable of understanding anything they say or do.  A group of moms who, essentially, have a vested interest in minimizing their child instead of helping them grow.  A group of moms who use the same arguments that have been made to justify torturing animals, enslaving black people, denying women the right to vote, shutting insane people up in barbaric asylums, tossing away mentally retarded people, and abusing children*: the argument that "we can say or do whatever we want and it won't hurt them, because they don't have the capacity to understand."  To me, this is an evil thing to do, and what's chilling is that these are not otherwise evil people but perfectly normal parents who love their children. What's even more chilling is that there are perfectly good people out there who are not horrified by such parents and the way they put their children down, but actually defend them.

I would like to think the majority of parents of autistic kids aren't like this.  Yes, that includes parents who've had a bad day dealing with their kid's meltdowns and vent (not in front of the kid), "I hate autism."  Yes, that includes parents whose kid has just been diagnosed, who wish that their kid didn't have autism and their lives could be as easy as their neighbor's.  Yes, that includes parents who think "why does this have to happen to us?"  We're all human and being responsible for a kid with severe disabilities can bring out some ugly emotions.  So long as they don't regularly take it out on their kids, I see no reason to judge.

I think parents who are really in a place of concern for their child want to see their child grow, want to believe their child has capabilities or potential that they haven't seen yet.  They might be afraid of false hope, or of therapies that won't help, but basically, they want to see the best in their child, they look for it all the time, and they don't attack people who also want to see the best in him or her.  Parents who really want to understand their child and do what will help him or her grow will at least sometimes be open to information about how their child sees the world, from any source they can find--including autistic adults. They might decide, "this particular autistic adult's experience doesn't apply to my child because xyz," but they'll hear her out first.  They won't take the attitude that no information about their child is reliable unless it comes from another parent with a child at least as disabled as theirs--because what matters to them is getting insight into their child, not protecting their own egos.  Again, I would like to think most parents are like this.

This would be a good point to acknowledge that I'm not a parent of an autistic child, and I don't know if I'd have the patience to do a good job.  Being a sibling is very different from being a parent.  I can teach, mentor, protect, explain, advocate for, my brother; but in the end, I am not the one responsible for making sure he has the skills he needs to live independently, or the ability to make his own choices regarding the balance between living true to his autistic self or assimilating to the world's expectations.  I don't live with the constant fear that I might be inadvertently screwing my kid up for life.  And I don't have to have the monumental patience needed to avoid communicating my fears to my kid, making him feel bad about himself.  Would I be less judgmental of parents with a vested interest in seeing their kids as incompetent if I had equally severely disabled kids myself?  Maybe, or at least I'd express myself about it differently.  But with so many other parents of severely disabled kids, like @AutismJournal on twitter, doing better, maybe not.

Once again, kudos to the great autism parents reading this.  I've been blessed to get to know you and have learned a lot from you.

*I'm sure this argument has been made before, but IMO all the "-isms" we reject now--racism, sexism, etc.--are fundamentally based on ableism, and in order to reject them, we had to argue that actually, women and other ethnic groups are just as able.  In a sense, ableism is the final frontier of prejudice.