My Autism Yardstick
By Julie Obradovic
For quite some time now, I’ve been using my experience with autism as a way to measure life.
“Well, it’s not autism,” I’ll think as a friend tells me about their child’s issues.
“Been through worse,” I’ll shake my head at what seems to be a trivial matter comparably speaking.
“Do you have any idea what you could be dealing with?” I’ll sigh at the person complaining about a problem I perceive as no big deal in the grand scheme of things.
Without realizing it, I gave myself a yardstick by which to measure my life and others: my autism yardstick. As if it were lying down in the grass in front of me, symbolizing life before autism on one side and life after on the other, until now I have used it unconsciously to rate anything from trauma to illness to complaining to whatever.
It isn’t autism.
Been through worse.
Do you have any idea what you could be dealing with?
On the surface, it doesn’t necessarily seem like a bad thing. Autism indeed, for me, was a traumatic experience. Watching my healthy child slip into a world without words while experiencing tremendous illness and suffering is hard to describe accurately or completely in terms of how it hurt me as a mother.
Coupled with a medical community that didn’t know how to help and blamed me for her problems all while being left to navigate recovery on my own only doubled the pain and fear. I have no shame in saying it was by far the worse experience of my life, and I make no apologies for that.
And there is a lot of truth in those statements. It isn’t autism. Been through worse. Do you have any idea what you could be dealing with? I have a hefty dose of perspective that I bring to all situations. Those thoughts have served me well.
However, I’ve recently become aware of how those thoughts have gone from helpful to hurtful. The very same thoughts that made that yardstick a tool to measure growth and give perspective also made it a tool to dole out punishment. The scary thing is, I had no idea.
1. They have made me insensitive.
It isn’t autism
Been through worse.
Do you have any idea what you could be dealing with?
At some point these thoughts allowed me to put myself on the pedestal of pain, as if no one who hasn’t lived what I have lived could possibly ever have something difficult to deal with or worthy of being upset about.
Do I think I’m the champion of human suffering? I wouldn’t say those words, but I think I have felt that way.
“Oh yeah? Well, YOU don’t know suffering, other mom! Call me when your kid has regressive autism!”
I’ve been around the autism community for ten years this summer. While there are several adjectives I could use to describe us, the one that is undeniable is fighter. We are fighters, and that is where the “warrior” term comes from. It is supposed to be a compliment.
But sometimes, I believe, we can wear our warrior term as a weapon. We can be quick to cut down other’s suffering. We can be harsh on those we don’t believe have “earned” their pain like we have. We can compare tragedies, for sure, and we can often believe “we win”. My child’s autism is worse than your child’s ________. My pain is worse than your pain. Our plight is harder than your plight. Warrior, for some, changed from being a defender to be an aggressor.
In fact, I recently realized the only people I would ever really feel badly for are those whose children are worse off than mine ever was, or the truly worthy of the pain pedestal, in my opinion, those whose children have died from their autism. I’m not kidding about that. If your child’s condition didn’t steal your child’s potential, put you on the defensive, isolate you, and leave you to figure out your child’s health on your own without services, I had little pity for you.
For example, I have a high school classmate whose son has a horrific, life-threatening condition. He’s had to endure brain surgery and months of time in the hospital. His fight is not over.
And yet, here were some of the thoughts I caught myself thinking when I would come across his mother’s Facebook posts about his progress.
Well, at least he’s talking to you. At least the doctors aren’t blaming you for his problem. At least you got to have 14 years of health for him. Look, the whole community has rallied for him and your family. Do you have to sit there and look up the medical studies yourself or do you get to implicitly trust your physicians?
These were my thoughts! Even if they were only for a second, because a second is all it takes to want to smack yourself for such an insensitive and stupid thing to suggest, they were real thoughts! Here her child is, possibly about to die any day from this super serious condition, and I’m applying my yardstick.
2. They’ve made me a sucker.
In my personal life, I’ve had a hell of a year. Actually, it’s been a hell of a few years. All of it culminated in craziness just shy of Christmas. Since, my world has been turned upside-down, and the whole time, I couldn’t count the amount of times I have caught myself comparing the pain of what I’m experiencing now to that of which I experienced with autism.
Well, it’s not autism.
Been through worse.
Do you have any idea what you could be dealing with?
No, it’s not autism, Julie, and yes, it could be worse. But that doesn’t mean it’s okay!
By using autism as my yardstick in my personal life, I let a lot of things slide that I shouldn’t have. I let some people treat me very poorly, professionally and otherwise, because, hey, it wasn’t autism. And hey, I’ve been through worse. I’ll get through this too.
Somehow those phrases got twisted in my head from helpful ways to keep life’s difficulties in proper perspective, to phrases that prevented me from doing just that. My perspective got skewed. It isn’t autism went from meaning; “be grateful” to “it’s ok if people take advantage of you as long as it’s not as bad as autism”.
Lessons learned. Just because you’ve been through something terrible doesn’t mean no one else has either. And just because you’ve been through something terrible doesn’t mean everything has to be as equally terrible to still be terrible!
These two experiences, watching a friend’s child almost die from a distance, and going through another serious episode in my own life, finally gave me pause. Why does everything in my life have to be measured against autism? And by doing so, intentionally or not, was I hurting others or myself?
The answer, for me, is yes. And I am confident I am not alone.
Check out how you’re using your autism yardstick. Are you using it to measure growth, or beat the heck out of someone, including yourself? It may be time to get it back to its original purpose or simply put it away for a while altogether. I know it is for me.
Julie Obradovic is a Contributing Editor to Age of Autism.
Very inspiring post. Thanks for sharing your experience.
Tom
Posted by: Tom | June 26, 2014 at 10:56 PM
I could write a book on this topic alone, Julie.
Before autism, I used to watch a lot of the decorating/real estate shows on HGTV. They were mindless entertainment I enjoyed while I folded laundry after a long day of taking care of my three young children.
But after the full weight of what had happened to us (my son and our family) with the ASD DX, my role in poisoning him, the sheer hopelessness, these once benign shows turned against me as a pleasurable escape. I *despised* these clueless couples who "hated" the countertops in a potential home, and declared it "unlivable." Every show topic seemed so shallow and concerned with things that were so unimportant in the scheme of things. How could I not have appreciated life more before it had been stolen from us?!
My son is recovered, and I find myself once again worried about things other than ASD. I do the same thing you do. HOW can I possibly be upset about spending tens of thousands on fixing our boy? Or any other number of otherwise valid concerns and problems, some of them really big....
I still use my yard stick--on myself and others--though not as often. But I view the world differently now, through a different lens, and that won't ever go away.
I love your posts, please keep writing.
Posted by: Michelle B. | June 26, 2014 at 09:34 PM
Thanks, Julie, for sharing your honest self-analysis. I'm guilty of using a ranking system for disorders -- with epidermolysis bullosa atop the misery list.
We are not always equipped to recognize when our situational responses are faulty. We experience compassion fatigue. We compartmentalize. We block.
It often feels lonely out there on that "pedestal of pain" you mentioned. But because misery loves company, we're not alone for long.
When one's child is stricken with a health care disaster and medical theory becomes reality, the emotional and sensory shift is swift and intense. Before our own crisis, we observed others' disasters from far -- remote, removed -- as if sitting passively in a comfy car, absentmindedly viewing the passing scenery.
Posted by: nhokkanen | June 26, 2014 at 08:57 PM
Thanks for an important reminder to keep a hold on essential elements of humanity.
I didn't feel generally well before I had my kids. I've been something like a little lonely sheep very often out on the fringes since about the time I have memories of any social interaction. But sometimes I'm still really weirded-out by the extent of change of perception and greater isolation that has come with injuring and seeing how I've injured one of my children in greater measure than I believe I've been injured and probably not provided my other child with the "at least happier than my childhood/adolescent-hood" I'd hoped to make possible. When I was a kid I had a tendency to break into tears if anyone else was upset--I guess I thought I was a good sympathizer, though I don't think I had much skill at cheering anyone up. Now I'm carrying around the burdensome impression that no one really wants the "help" I'm bursting to dump on them all. I just have to spend a little time around someone and get to know them a little and--darn it!--immune injury, neurological injury, iatrogenic injury, or something suspiciously like comes up. Then it's hard to effectively sympathize, unless feeling really mad for them and us and doing my best to keep it to myself is sympathizing. Our collective sheepishness (though not quite all inclusive), hubris, cavalier denialistic facilitating use of poison, shutting down of the "naysayers," worshiping the works of our own hands, whatever it is ... I wish I could only care enough to work to better effect against it.
Posted by: Jeannette Bishop | June 26, 2014 at 04:33 PM
Very insightful and I can relate. I use the autism yardstick too.
Posted by: Shanti | June 26, 2014 at 12:33 PM
Julie,
You are without a doubt one of the best writers in our community. Thank you for your work.
All the best,
Kent Heckenlively
Posted by: Kent | June 26, 2014 at 10:28 AM
Julie,
I think our experience was that a tremedous gulf of understanding opened up between ourselves and everyone else. People were really in denial about what was happening to us: they preferred to think that it wasn't that bad, but they absented themselves at the same time. There were very few waves of compassion coming in our direction (I wouldn't say none at all but anyhow it was generally of zero practical use even when it did). I am not sure that we lost the ability to sympathise with other people's lives but we had very limited ability to help - as a result we probably spent a lot of time feeling very bad.
It is obviously realistic to acknowledge that there are other kinds of serious misfortune but there is something to be said for being slightly aggressive over what's happened to us rather than going on a guilt trip. Yes, we have to remember there are other things but we must not start on apologising too much. You have done well: you have protected yourself and you have protected your community. Don't forget it.
Posted by: Sorrow rather than anger | June 26, 2014 at 06:13 AM