I’ve had this post in my brain and in draft, adding to it and changing it around for well over a month. Ever since seeing Facebook posts and other online discussions in comments under Autism articles where mothers stated that that they hate their childrens Autism and aren’t ashamed to say it, and not a single one was in a mood to be told that she needed to be accepting because she’s not… that if a cure was found she would grab it with both hands because she feels that Autism takes her son away from her during his worst times. Oh, and don’t tell any of them how terrible AutismSpeaks is either because they they’re great. Other moms of course piped in to sympathize, others empathized, one or two using the word tragedy to describe Autism … and here I was extremely uncomfortable and seething a bit inside over the initial statuses and the following conversations. When I did participate in these conversations, I probably wasn’t always the nicest I could be about it. I was angry because I was heartbroken for those children.
The words used to describe their children throughout those discussions upset me greatly because those “feelings” of hating Autism were putting it into a box separate from their children. Without the ASD, they felt they’d have a whole child instead of the supposedly broken one they saw before them when their child displayed difficult or upsetting behaviors or violent behaviors, or behaviors they deemed inappropriate like the all-embarrassing stimming or the ever-frustrating inability to develop at the same rate at their peers and, you know, not know better the way their neurotypical counterparts are assumed to do.
So ok… We’re allowed to feel emotions that don’t quite match what we’re “supposed’ to feel because hey… emotions. I said this on another Autism blogger’s thread.
“Our emotions don’t always match up exactly with our beliefs, and that’s because they’re emotions. We’ve been having this revolution of owning our emotions and letting people know with a refreshed honesty what our emotions are in a society that stuffs down its emotions and doesn’t know how to be true and that’s been damaging. But those of us who express the conflict inside that doesn’t match up with what we’re “supposed” to feel even while we continue to do what we believe and know is right will be criticized. Those momentary feelings are normal. It’s what we do with them that’s important… and if those feelings become permanent that’s important.”
I have always believed that from start to finish and I always will. What I write about next, some I have always felt but some I have evolved to believe. I used to think of Sweet Girl’s Autism as something she had, as in “it could be apart from her…” You know, in that whole overdone and inaccurate “SHE HAS AUTISM BUT IT DOESN’T… HAVE… HER!!!” kind of way. I had the cognitive dissonance that let me believe I wasn’t really being hurtful to my daughter and the people she shares a neurology with. Those words never really matched up with the belief I’ve always held that I never wanted a cure for her. It’s not a disease or an illness, and I’ve always known that… it’s something she was born with and so why would I want a cure? Why would she?
But if you’ve followed my blog since the beginning or at least the beginning of realizing our journey with ASD, you’ve probably noticed changes in my beliefs about how to relate to Autism and the language I use regarding it, and how I advocate regarding it. All I can say is Evolution… and a huge part of that is because I have made it a point to follow blogs and Facebook pages galore written by autistic adult advocates. At the bottom of this entry I’ll share a few of the links to them for you if you’re interested, and I’d love for people to share their own in comments. I’ll add them to the post.
So anyway, please forgive me and try not to use my words from six years ago (or whenever) against me if they seem to clash with what I’m saying now. Now is what matters. I was open to learning then, I’m open to learning now. I’m not and never will be perfect.
I believe that using the phrases, “I hate autism” and “I wish my child/parent/sibling didn’t have autism”should never be spoken out loud in public, shouldn’t be written down or uttered out loud under any circumstances.
Let me be clear. I recognize that these are emotional thoughts and we are allowed to have any feelings at all. We are human. But emotions are fleeting. And emotions don’t have to become belief systems. We choose what we do with those emotions.
I see Autism-hate from parents all the time on “advocate” blogs and articles and on Facebook and it makes me cringe and kills me a little inside every time. And if it makes ME feel that way as a mom to an autistic daughter, I can only imagine how it makes an autistic individual feel. I can only imagine how the children of those parents will feel when they catch on that their parents feel that way.
Using those phrases out loud makes them real, gives them substance, and suddenly they’re not fleeting, momentary emotions. They’re out there permanently for eternity and they have weight. WRITING THEM DOWN for the world to see and then defending those words of hate are there for the child to find without context. Without compassion. And then when someone such as a teen or adult Autist calls them on it, telling them how hurtful it is, that parent advocate digs their heels in about their right to feel what they feel and think what they think about their own child’s autism and they become even more invested in the emotion and their right to have it and their insistence that they and their children are suffering and a cure is the only way; that the individual speaking with them must be unusual or have had exceptional supports in place and that THEIR child is SO AUTISTIC (sorry, has autism so badly) that they couldn’t possibly understand. Then they insist that their child doesn’t have any clue how they feel, and they don’t love their child any less than they would if that child weren’t neurodiverse. They’re disbelieving EVEN WHEN the Autist they’re speaking with tells them that their own parents felt the same way and tried to hide it and they knew it the entire time as children and it was so hurtful that they felt suicidal. They’re even told that since they’re communicating well online they must not really be disabled or have ASD nearly as bad as their own child does.
Yes. This happens.
We already have to choose our words very carefully. When we choose to publicize our experiences and thoughts and emotions, we’re taking a big risk and opening ourselves up to additional criticism. It doesn’t matter if it’s in a blog entry, an article, a comment on that article, a status or comment on Facebook, or in some parenting community. We need to be mindful of our audience and the fact that one day our children might read what we’ve written and we need to stop underestimating our children. Autists are not, after all, Intellectually Disabled.
In real life, when we have a discussion with someone and the other person suddenly says,
“So OMG, Someone did Some Such Thing and I think they have a valid point because insulting reason here.”
“Well that was hurtful and rude”
“No it wasn’t.”
“Yes it was. I’m telling you it was because you hurt my feelings.”
“No, it wasn’t because I wasn’t trying to hurt your feelings. I was trying to explain why Someone did Some Such and I think that they have a valid point. “
“Ok, but while you were explaining you said something hurtful, and we’re supposed to be honest with each other. You hurt my feelings.”
“That’s so stupid. You should know that I wasn’t trying to hurt your feelings. I can’t believe you. I don’t think I can talk to you any more. You hurt my feelings.”
“Insult insult insult”
“Oh yeah? Well, if you just listen I can explain how what you said was hurtful. It’s because reasons the insulting reason you gave hurt my feelings here.”
“I already told you, I wasn’t trying to hurt your feelings. You should know better. Insult insult insult.”
“Whatever, F$#@! you.”
Can anyone in the class tell me how that conversation could have gone better?
And yet it’s a double edged sword because each and every one of us is entitled to have emotions. We can’t control them. They’re messy. They happen. They happen to all of us. Many people, including parents of autistic children, believe that Autists are incapable of emotion because they show emotions in a different way than others do. We don’t realize how hurtful is it to autists when we try to tell them what/when/how is absolutely appropriate to feel and emote. How hurtful is it when we try to tell them what it looks like to comply but they just can’t… not won’t.
That double edged sword makes it difficult to explain that even though we’re the parents and we try our damnedest to imagine what our autistic children are going through, we can’t when we’re non-autistic. We need to learn more patience to allow our children to work things through naturally with guidance rather than force… and hopefully the Autism Community will realize that non-autists need the same thing. Immediacy regarding emotions and changing a way of thinking isn’t possible for most people. I’m the biggest banner waver for Autism, and while I’ve always been an advocate for my daughter even before I knew she has autism, it took me a few years to feel good and completely accepting about it and to not make at least part of it about me. It didn’t happen right away.
When my daughter has impossible moments, I’m the most understanding I can possibly be and I love her more than I can ever say, that doesn’t mean I’m enjoying it. Do we feel as stress free, happy go lucky, blissful, nonstop advocates for our neurotypical children? Or are we to feel guilty for not loving the entire minutiae of who they are every single instant of the day? Of course not. Because we love our children, neurodiverse or neurotypical, that doesn’t mean we always like them as people. ;-) We don’t always love the behaviors. This is where understanding comes in, and figuring out if those impossible moments are typical of the age or are part of the neurodiversity.
Is it all right for me to say that there are times I really wish my non-autistic eldest or youngest daughters had little “adjustments” in their personalities or should I beat myself up because people will assume I can’t possibly love who they are? Well… I’m the biggest banner waver for my middle daughter and for autism as anyone. But there are times, just as with my non-autistic children, that are impossibly difficult and I just don’t know how to get through them. I wish that I did. I wish that she could help. I wish that a couple of weeks ago when she was sick it wasn’t as impossible as it was, with her inability to handle puking and oh… the aftermath that we were dealing with and coming back from having to take her to the ER for fluids.
I’m allowed to feel sorrow and helplessness when I’m sitting in the ER watching my daughter get an IV she didn’t want and hates due to the aftermath of an illness that she’s having trouble coping with even though that illness is done… she regressed with eating, drinking, toileting full of fear and anxiety. She’s 11 and two weeks later she was still relearning how to EAT. Relearning how to DRINK. Relearning the signals that tell her when to use the toilet. Should I be thankful and joyous for that regression? Of course not. Doesn’t mean I was hating Autism. And yet… no, I wasn’t happy for her autism sitting in the ER while she had a butterfly IV in her arm. I wasn’t happy at the thought of a catheter because she was convinced she not only couldn’t pee but had no pee in spite of the ultrasound. I was her advocate all the way with a resident at the childrens hospital who just did not get sensory issues or autism and treated her like she had severe intellectual disabilities and wasn’t worth his time. That aspect of autism kills me.
When she’s sick, and then while she recovers, I’m her punching bag. I don’t get to recover, and I have to keep on smiling and say, Yay Autism. Well… We are parents. We take what we get. This is what we signed on for. When we chose to get pregnant, follow through with pregnancy, and keep our babies, we signed on for whatever came our way. No matter what that meant. We don’t get to say, “I didn’t sign on for this” or “I’m not cut out for this.” Yes you did and yes you are. I hate to break it to you but you don’t exactly have a choice in the matter.
We are flawed. We love our children unconditionally and we are our childrens first and best advocates before they self-advocate. The best way we can advocate and teach our children to be self-advocate is to be sincere in loving the WHOLE child… and that includes the Autism in spite of the difficulties. As difficult as those impossible moments are for us as parents, how difficult must they be for our children?
While Autism Advocacy may dictate our actions even while our children are the midst of the most unloveable and difficult behaviors (which of course are even more difficult for them), we are still allowed to have our own feelings. Most of us don’t share them because even when we have children that are non-autistic (and I do) we’re not ever supposed to complain or be anything other than grateful that we were given the gift of children. We’re not supposed to admit to being weary, or that we’ve got any feelings at all besides love and joy and gratitude over our children and their neurodiversity. Anything less means we couldn’t love them enough or be the best advocates to society.
Well… I recognize that it’s not All Or Nothing. Here’s the secret. We can control our actions and how we respond to our emotions. We can also teach ourselves how to redirect our emotions and use them for good. We’re allowed to have emotions in reaction to the things that occur in our lives but what matters is what we do with them and how we hold on to them. It can be easy to forget but we have many more roles and additional depth in our lives to Autism Advocate Mom. We’re allowed to let those other roles in. When it comes to the emotions dictating the thoughts that Autism should be cured, that Autism is a tragedy, that Autism is impossible… we can CHOOSE to let those emotions remain momentary and not become a belief system. We can choose to accept all of the positives, and remember that the positives of Autism outweigt every single negative.
No matter our momentary, occasionally negative emotions this does not ever, ever mean that we don’t accept our autistic children. We (the majority of us parents) accept them 100%. I accept everything about my daughter. I accept the Autism and everything that comes with it. I’m not always Sunshine Gal and rainbows about it, especially not when I’m dealing with trying to cope with the effects of my own disability. I know her Autism isn’t about me, but my emotions are about me and I don’t need someone else to validate my emotions any longer. And maybe that’s it. We welcomed this beautiful girl into our lives from the moment we knew she existed in my belly… that meant we welcomed all that would come with her. That meant acceptance of all of who she is, and still does even when emotions don’t match up to what the most ardent, militant advocates want you to express. And that’s really ok. I promise. You just really have to remember that words are powerful. The words you use to describe Autism are powerful. And you really can’t separate Autism from your child. They are one and the same.