I was a little taken aback at the hoopla surrounding my Suck It Autism post and last week was a whirlwind of negativity and support as some readers picked apart my intentions with a fine toothed comb; those who know me best or can at least relate to my daily life knew what I meant when I wrote a blog post about an achievement my son made in the face of his adversity.
I don’t know if I’ve been hiding under a rock (though I think it’s more to do with living with the complexity and non-stop action of autism around here) but the fact that there is so much discourse and anger and finger pointing among these diverse camps of autism spectrum disorders was news to me.
“Curebie?” What the hell is a “curebie?” I asked my friends and family as I typed the term into my Google search; I was unprepared for the definition that popped up on my screen.
The fact that there are folks out there who think it’s wrong that I go to bed at night praying for a cure for my son someday shocked me. At first it was in a “Who the hell do you think you are?” kind of way but then it just sort of turned into “HUH?”
The actual name calling (which ranged from bigot to curebie to child abuser to some other interesting choice words) didn’t bother me as much as I would have thought they would had someone come to me before all of this and given me a glimpse of what was about to transpire. And for that I’m glad. I didn’t stay up all hours of the night trying to convince perfect strangers via social media that I wasn’t spending my days abusing my child or hating entire groups of people. Because I knew better. That’s not who I am, no matter how many times I’m depicted that way by others. And anyway, it’s much easier to convince people that you’re evil than that you’re good. I think we want to believe that people are inherently good but the truth is we give evil a running head start.
But the fact that I wasn’t defending myself all hours of the night didn’t mean I didn’t feel anger when I read some of the comments that were being written about me and my relationship with my son and my intentions for his life. It was that white hot anger that pierces your gut and leaks into your veins and blisters everything you see or hear or touch. It’s not a productive form of anger; it’s a destructive one. So I decided to stay quiet and listen and maybe even learn a thing or two.
What I learned turned my white hot anger into sadness. I suppose I really was living under a rock for so long because it never even occurred to me that there was an Us vs. Them war going on among those of us touched by an autism spectrum disorder. But there was and there is and suddenly, without intent, I was smack dab in the middle of it.
I remember the day I realized that what had plagued me my entire life and caused me so much mental anguish and physical pain finally had a name. I was 15 and in the self-help section of the library (what 15 year olds do YOU know that spend their afternoons in a self-help section of a library; what can I say, I was desperate) and I swear when I tell you that the binding of this book was sticking out of the shelf as if to say “ME! Over here! Pick Me!” and I did and inside was the answer I had been waiting for and I can still recall the way my legs folded beneath me when I began reading. And there I sat, in the middle of this library silently sobbing, my hands shaking as I touched the letters that would change my life forever: Obsessive Compulsive Disorder.
My excuse for drinking straight vodka during sophomore English just so I could concentrate on Camus instead of the compulsions that threatened to undo me.
OCD has been a part of my life for what seems like forever and a day and I think by now there is no way to separate the two, though dammit if I’m not trying. Does it make me a better writer? A more compassionate human being? Someone who doesn’t take a split second of inner peace for granted? Sure. But I would give my left arm to be free of the chains that bind me, that force me to act out in a way that can only be described as certifiably nuts. I accept that I have it, but my prayers often turn to downright begging that it goes away after spending an entire day slaying dragons.
And so it is from this place that I see MY SON’s autism. I accept that it is here. I accept that it is in one form or another a part of my child. But I see it as a curse that threatens to unravel him from the inside out if I don’t pull out my sword and intervene on his behalf. My parents did it for me and had it not been for their tireless efforts to get me access to the best doctors and interventions I guarantee I would be in a padded room right now drinking dinner through a straw. I never once felt unloved or resentful because they were trying to “cure” me. I felt protected. I felt worthy. I felt hopeful. My parents’ dreams for me to live a life free from ocd did not make me hate myself or feel unaccepted for who I was. And though I am far from realizing that dream, I shudder to think where I would be without the unwavering support and dedication of my “curebie” family in helping me to heal and function (somewhat) in the world.
I won’t spend this post outlining the millions of things Andrew cannot do for himself, the millions of ways he can get hurt. It’s enough that I know. Nor will I plead with you to believe me when I tell you that I don’t need to hear it from my son that he needs help. I see him, I know him, I AM him. That is the blessing and the curse of a mother. I’m not writing this post to try and convince you that I have a right to my feelings because the truth is I have a right to my feelings. Period. And just because I was called out for them in a public setting in ways that were offensive doesn’t mean I’m going to give up that right. I can’t be bullied into submission by some cheap name-calling and fear tactics.
And as a writer I chose long ago -when I began to pursue this career, this medium that sometimes is the only thing holding me together when everything else feels like it’s falling apart -that I would do it with the same integrity that keeps me sober. I made a commitment to write with complete transparency because it’s the only way I know how and if I don’t then I have no business doing it in the first place.
And so that Suck it Autism post was complete transparency. And I’m not sorry for that. It’s how I feel sometimes. It’s not how I walk around all day and in fact, if you saw me out in the real world you would never know that I was that “stupid Ashline chick that pissed me off with her bigoted post the other day.” I promise you. Instead you would see a mother unabashedly devoted to both of her children, a mother who is beginning to show faint lines around her eyes from all the laughter in her life (very, very, very faint lines mind you), a mother who makes mistakes, a mother who sometimes cries herself to sleep, a mother who appreciates the infinite good that her special needs son brings to the universe and a mother who is scared to death of what the future will bring for her child with severe autism. The kind of autism that feels way more like a curse than a gift.
But if I write with integrity, the other side of that is that I must listen with it too. And when I took myself out of the picture and just listened to the words being said on the internet what I heard was that my post caused some people pain. Not faceless numbers or statistics, but people. And I’m not okay with that. I don’t need you to like me and we don’t have to be friends on Facebook and you can go on bashing me after this if you want. I’m 100% okay with that (because I’ve kind of bashed you to some of my friends too*). But the fact remains that some of you felt hurt by my words or threatened by the way you think I perceive people on the spectrum because my words were misconstrued to mean something entirely false and for that I’m sorry. I can’t convince you otherwise. That part’s out of my control. But I’m sorry anyway.
And this whole Us vs. Them thing? Man. That’s just not how I roll. So let’s just set the record straight here okay? I do NOT hate people because they have an autism spectrum disorder or any other disorder for that matter. I’m not quick to hate in the first place. You’d have to do a pretty number on me to get me to hate you. But even as far as disliking someone – a diagnosis, a disability, a particular hair color, an aversion to my cooking – that crap doesn’t matter to me. I don’t base my feelings about someone on those merits. Except for people who forget to turn off their blinker and proceed to stay in the middle lane for the next thirty minutes when their blinker is clearly indicating that they want to merge right, and so I end up confused and want to veer them off to the right lane where their blinker says they should be.
But I do NOT dislike people just because they have a certain diagnosis such as an autism spectrum disorder. Now, if the person with the blinker problem happens to be on the spectrum, well then chalk it up to an unfortunate coincidence.
To me, if you’re a jerk, you’re a jerk regardless of what label you’re living with. And some of you that came after me were real jerks. Grade A. So ya. I dislike you. But not because you have autism. Because you were rude, judgmental and pompous. The rest of you, even though you may have disagreed, offered up real insight into your feelings on the matter and I appreciate that insight because that kind of constructive dialogue is what makes the world go round.
But here’s the thing. My opinions about autism and the way it affects my child and our family day-to-day still stand. I realize that I don’t speak for everyone when I write about our experiences but that’s the whole point. I speak for me. And for my family. And for the reality we live each and ever day. That’s what my special needs column is primarily about for The Orange County Register and that’s what this blog is about and that’s what I do, take it or leave it. So I will not apologize for my perceptions of what is happening to my son at the hands of his autism and my lifelong devotion to making him better. I will not apologize for writing what I know and how I feel. I do it with my alcoholism, my ocd, my panic, my son’s cystic fibrosis, his epilepsy and his autism. I do it when I have a bad day and I do it when I have a good day. And I will keep doing it because to do it any other way would make me a liar.
So. I’m going to go ahead and go back to writing what I know without being paranoid that I’m going to offend somebody because chances are, I’m going to offend somebody. But that’s not the intent behind my words. I do not hide behind them. They are a reflection of the life I live and even though it is an imperfect life it is my life just the same. You don’t have to come back and read or comment, but of course, as long as you’re civil, you are welcome to stay and *gasp* disagree. Because it’s okay to disagree. I promise. And it’s also okay to step back and say, “I can see how someone might think that, even though it’s not true, so now the ball’s in my court and I need to just come on out and say, ‘ You’ve got it all wrong folks, that’s Not True.’
I’m also going to go back to reading, especially from the folks who leave thought-provoking comments instead of slinging cheap insults because anyone can do that and it doesn’t breed anything but contempt and hatred and that whole Us vs Them stuff and I have zero interest in that. I want to learn more about other people’s perspectives about autism spectrum disorders because it’s the right thing to do but that also means extending me the same courtesy.
But mostly I’ll be over here slaying dragons, whatever form they may take, be it ocd, autism, a school yard bully, my 8 year old son’s math homework……
It’s just what I do.
And I like to think I do it well.
*Again. I did not bash you to my friends and family because you have some form of autism. I bashed you because you were being a JERK.
10 Replies to “Us vs Them”
Someone is always going to find something offensive. Can you imagine trying to write and being paranoid about your words being offensive to someone – that would be a tragedy. I can’t imagine that. Write for yourself and remember that for every nay-sayer there are hundreds people reading quietly absorbing every word.
The great thing about the Internet is that you can click away and find a place you do enjoy.
I like it here.
oh. I like you here too. It was a trip to read so many negative words about the way I may be treating my son and my lack of love for him. The internet is a dangerous place when words are misconstrued and people believe what isn’t true.
But I do what is right for my child.
I believe that.
THAT is my truth.
Thank you kochana.
I like you, I really like you! (paraphrased from Sally Field at the Academy Awards oh so many years ago).
I will do anything in my power to help my daughter feel better and be able to do more for herself. It may take a special diet, it may take medications, it may take all kinds of therapy – but she is going to get whatever I can do to help her feel better. ES her therapy – at least most of it, and the stuff she doesn’t like she doesn’t benefit from so we move on.
From what I have seen, the people who are against us “curebies” are higher functioning and not in constant pain. They have autism so having empathy is not a strength and they don’t understand that we have different issues within the spectrum that we want to help our kids with. My daughter has two friends at school now and I would love for her to have a friend or two at home too but she isn’t ready for that. She loves going to school – it is the only place where she has friends.
I don’t want to cure those who don’t need or want “curing” but my daughter has spent too many of her 13 years miserable and unhappy. Yeah for us “curebies”!
I like you too Linda! I hope you stick around! Sounds like you and I share the same beliefs when it comes to helping our kiddos! And we too move on from what doesn’t work and are careful to choose only the things that make sense for our child and after careful consideration. Thanks so much for stopping by and commenting!
I have to admit I did not read your post, but saw it on one of the fb pages. Perhaps at on the unconscious levels that is why I used the word “suck” in my personal posting yesterday. “Victoria was my miracle baby, and she is truly my heart. When she was first diagnosed with autism, I wanted to “embrace” autism. Embracing will only take you so far. I’m still not certain if I would be in the autism spectrum, but one thing is certain, I despise seeing my little girl continue to struggle! Autism sucks! Autism is not my child, and I see her struggle and not liking everything that goes along with autism. Having a child with autism changes what you do on a daily basis. When you have a child with autism your child’s life is altered.”
I see my child struggle everyday, and she tries so hard. My daughter and I share a very rare genetic disorder, and I had many sensory and learning issues. I don’t know if I would be on the spectrum, but I know a little of her word. I was always different and yes, it sucks! Sorry I don’t want to offend, and just my person opinion from experience and what i see my daughter go through.
No offense taken. Thank you for sharing your journey!
You are an amazing person. I would like to meet you one day, I live near OhMommy so it might be possible if you come this way.
What you go thru on a daily basis as the champion for your son, makes me look at you in awe. Keep writing and like P said, you can always click away from the things you (readers) don’t like.
Stay the course. Some of us have got your back 🙂
I applaud you! In no way shape or form should you have to APOLOGIZE for your thoughts of autism. I’ll continue to tell Autism to FUCK OFF every day. My son is approaching 18 years old. I’m kind of sick of getting my ass kicked. My house destroyed. Vehicles destroyed in the inside. Transportation companies that refuse to transport him. Schools that want to use straight jackets on him and physically restrain him until he is in such a terrified stated that he’s vomiting bile from his stomach. How DARE these assholes pass judgement on you. I can’t believe how ATTACKED you were from people who are in the same situation!!! ALL of our kids are different. Autism isn’t a cookie cutter. Some of us actually have it WORSE than others believe it or not. I do apologize for using such foul language on your blog but you know what? FUCK YOU AUTISM for stealing any chance of a productive life for my son. He’ll never have the opportunity to be President of the United States. He’ll never have the opportunity to make greater strides than acting appropriate in social situations. He’s never had a friend. He’s never experienced the love of a girlfriend. His sister at 15 still gets excited if he just simply ACKNOWLEDGES her. At this point, he’s not even going to be employable because after his last behavioral outburst that put me in the hospital, and him in the psych ward the only thing he qualifies for is a workshop for intensive needs. OR, I could place him in a residential facility with other intense needs adolescence, some of which are sex offenders. So here. I’ll say it for you. FUCK YOU AUTISM! FUCK YOU FOR WHAT YOU’VE DONE TO MY SON, TO MY FAMILY ! We love our son so much, that we’ve made accommodations to our lives so that he never will have to be placed in a residential facility. We’re now home schooling him. He gets vocational training at home. Where he feels safe.
Oh, and FUCK those people, who couldn’t find the compassion in their heart to understand the bigger picture.. that your son READ!!!!
Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)
1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.
2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.
Jo, you clearly fall into Category 1, but some of us misread your statement as being Category 2, and it probably didn’t help that a lot of folks saw your “suck it” post that weren’t regular readers to put it in context. I didn’t read your posts until after the whole cycle had played out, so I’m not really in a position to apologize personally for the confusion.
However, I’m glad you came to understand why we would’ve taken it differently than you meant, and were big enough to apologize. Thank you very much for that.