Wednesday, March 27, 2013

The Awareness I Want to See

I want to see us move on from the past and move into “I didn’t mourn for you.” To me, that will be true autism awareness.

I’ve heard the argument that people need to mourn when they find out their child is autistic. I get it. I even get the argument about how they mourn for their own lost dreams when they realize they child they have is not the child they though they have.

But, you know what? We don’t have to have mourning at all.

I look at the LGBT community. 20 years ago, it would be pretty darn common for a parent to be sad, mourn, maybe even be angry when their child said, “Mom, dad, I’m gay.” The best, most pro-gay parent groups at the time talked about the need to give yourself (as a parent) time to adjust to who your child is, and that it’s okay to feel sadness. That it’s a real, authentic feeling.

Nobody doubts the sincerity of their feelings. But that didn’t make it right. While I applaud people who’s views about homosexuality have changed after a family member came out – and am genuinely glad they now accept their child – the reality is that before their views changed, they saw homosexuality in a negative way, not a neutral and certainly not a positive way. It took something very powerful – the love for their child – to help them overcome their own prejudice.

Now, I’m not saying these people are horrible people for having once held prejudiced views. They have changed, after all. And that’s admirable. But at the same time, wouldn’t it be even better to not have been prejudiced in the first place? We can’t necessarily help our upbringing and our ignorance, and, yes, how we respond when confronted with new information is what truly matters. But at the same time, do you not think a gay child (who hasn’t yet come out) is going to feel more comfortable coming out in a family where the parents have already shown acceptance of gay people rather than in one that it will take a process for the parents to grapple with their past prejudice? Of course it’s better to have the acceptance early, not just late.

Likewise, it’s possible for a parent to not be crushed when they find out their child has an autism diagnosis. It’s possible for them to say, “This is part of who my child is” and move on, without tears and pain and fear. And I think focusing so much on the need for some to mourn (which, obviously, is legitimate) keeps us from seeing what the world could look like. The world could be a place where “your child is autistic” doesn’t sound like a death sentence or a painful disease.

As an autistic adult who likes who he is, I’ve found I now have to add a disclaimer: Yes, of course, I’m not saying you should like seizures, aggression, pain, or anything else like that. But of course those things aren’t autism either. And before you make assumptions about me and my life, disabilities I do or don’t have, I challenge you to consider your assumptions. I’m not saying I’m just like your kid, but at the same time, don’t expect me to be happy when you say, “but if you were like my kid, you’d hate autism.”

I’m just wanting “your child has autism” to be seen as what it is: another insight into the makeup of your child. Alone, that statement doesn’t tell you much about the child. It doesn’t tell you if they will have an easy or hard life, if she’ll excel in academics or her career, if she’ll get married or have kids, or even if your family will be able to do A, B, or C – whatever A, B, and C are. It’s possible to not go through months of mourning for that child you thought you had.

Now, maybe you need to go through that. That’s fine, and it’s certainly better to go through it and come out the other side with a positive view of autism than for you to simply hold onto that view. But wouldn’t it be nice to just skip the mourning completely, and continue to celebrate the child you already have? That’s the vision I have. A vision where no autistic child has the experience of bringing devastation to their parents just for having a name for the type of person they are.

That’s the world I want to live in. That is autism awareness and acceptance.

This post is a reprint. The original is here:  The Awareness I Want to See. Read more about Joel's blog here:

1 comment:

  1. First of all, I don't think the analogy of being gay is an apt one. Being a homosexual doesn't make learning or socializing difficult. It doesn't give a person debilitating sensory issues. I get your analogy to a point, esp if you are focusing on discrimination, etc. And I love your ideal of a perfect world where parents are so loving and understanding that nothing fazes them, but I also get what it's like to be a parent. I have several gay cousins and their parents all had a bit of difficulty in coming to grips with that. My aunts and uncles and other family members were fantastic--loving, supportive, etc, but it wasn't easy on the parents. Part of that, I think was worry for them. Worry that their children would now be discriminated against, that they would face many struggles and difficulties that a straight person wouldn't.

    I don't think that means those parents were prejudiced. Not at all. They were loving parents who just wanted their kids to be happy and not struggle. Now, of course, they eventually realized that those kids couldn't be happy living a lie. What I am saying is that just because you struggle with something your child is facing doesn't mean it's because you are prejudiced.

    You mention how nice it would be for parents to move on "without tears and pain and fear." I see your point. I really do, but seriously? Pain and fear is a very big part of parenthood. I worry about my kids constantly. I worry about all three of my kids--my NT daughter, autistic son, and my toddler, who we're suspecting has autism. I don't want any of them to be bullied. I don't want them to struggle. I would love for them to be happy every single day of their lives, even though I know that is completely irrational and not even healthy. But when it's your kid and they are hurting, it pierces your heart like a knife, no matter what the reason for the pain.

    So, I don't really think it's a bad sign when parents mourn. We worry. We catastrophize and maybe even, at times, blow things out of proportion. I don't actually think a person's feelings are ever wrong. It's what they do with them that matters.

    Yes, I cried when my son was diagnosed. I was relieved, though, too, because I finally knew what was going on with him. I didn't wallow and I never let my son see that I was sad. I moved on.

    I love that kid fiercely. I love all of him. I don't want to cure him. I don't want to change him. Still, there are days I hate that he is struggling so much. I wish I could fix it for him. Just like I wish I could fix it for all my kids.