The Four Letter Word.

[I preface this post by saying that the views reflected here are mine.  I pass no judgment on anyone for their expressions of speech or thoughts.  I am sharing my own thought process.  I respect your right to feel differently.]

What happened when I heard the words, “Your child has autism” ? I kind of knew by that time that it was coming.  In fact, in a way, I was hoping it was coming because I thought it might help me get services from our state funding resource. But who would ever welcome autism into a home?  Clearly, I was no different.  My heart instantly felt like an anchor in my chest when I heard those words.

In part I think that is because, from the beginning, I was told my child had something “wrong” with him, that there was no cure, and that he would never be “normal.”  I had no idea what autism was but I knew it had to be something “horrible”, mostly because that’s what the medical profession, TV reporters, and society conditioned me to think.

In a world filled with neurotypical ignorance,  I was part of it all until my life was affected.  My very “non-understanding”, pre-diagnosis made me feel autism must be all bad, sad, deficient, disabled, and, at a bare minimum, not normal.  But was it “autism” that made me “feel” this way, or mainstream society’s view of autism?

Autism– in and of itself – is benign.  It is neurological.  It is raw.  And it is different to each and every person affected.  

When I see my son struggle, act out for his inability to communicate, destroy something,  scream or when I lose him to “another world”, my insides burn, my muscles tense.  When I got kicked and clawed while carrying him out of a public place, my adrenaline pumping while I ignored stares of people thinking I’m hurting my child, I felt spent, powerless and defeated.  I still have anger and frustration but mostly, I have fear.  And a strong sense of life not being fair.

I want to hate because it is a release.  A release of all these emotions that I cannot direct at my child whom I love.  I need to let go.  I need someone or something to direct my anger at, to let me release this emotional overload.  So an amorphous label takes the toll.

But what good will it do me to “hate” autism?  Will all those feelings of anger, frustration, fear, inadequacy, and exhaustion disappear if I express hate?  Will autism go away if I “hate” it?

On the other hand, if I freely express “hatred” at autism, is there a chance that my son, who has difficulty processing language, and, definitely, discerning figurative from literal meaning, may misunderstand and think that I hate part of him because I express “hate” for autism?

Oh.  Yes.  It is more likely than not that he will misunderstand.

By “hating” autism, I might mistakenly convey something I would never intend, in a million years, to my son.  And he is what it is all about.  So, no matter how angry, frustrated or fearful I get, I am not going to do what is easy for me, say what I have a right, by free speech, to say, and express that I hate autism.  I don’t need to.

Hate does not give me power over what I am powerless over.  Hate does not make it better, it doesn’t change anything.  Hate gives autism a face.  An ugly face.

There is enough ignorance in the world.  There are millions and millions of neurotypical people out there.  They don’t care what autism is.  They don’t need to care because they think their lives are unaffected by it.  Some don’t even believe it really exists.  And no matter how much we think inside our own “touched” lives that people already know what autism is – we’re wrong.  Most people don’t know.  At best, they fear it and they pity those of us who are “affected.”

So, who cares? Why should I want  to make someone aware?  For the same reasons, I’ve said all along.  Awareness kills ignorance and sprouts knowledge.  Knowledge leads to understanding.  Understanding can lead to acceptance, to nurturing, to voting yes for increased funding, to help those affected, to make life better for my son.

If I want people to understand it, I have to develop interest.  To develop interest, I’m not using “hate”.  Why would someone want to learn about something a stranger hates?  Easier to ignore it.  People are generally, lazy, in my opinion.  Why expend negative energy to learn about something I’m just going to hate?

How autism is perceived by others is affected by how I (and everyone who writes and reaches an audience) writes and reacts to it, how we express ourselves, how we handle or deal with what happens to our children and ourselves.  

Autism makes life hard.  There is no denying that.  It’s not some new age way of thinking.  It’s not something that you can put away.  You can’t hide it.  You can’t disguise it.  You cannot dress it up as “cool”.  You cannot make it go away.

Autism is a disability.  It now affects 1 in 88 people.  People “unaffected” may be curious.  They are either going to search for more, or run away and ignore, depending on what impressions they get.  I don’t want them to run away.  So, even though it hurts, both emotionally and physically at times,  (I cannot and would never deny that), I will not openly hate.

There is too much to lose and nothing to gain.

[And being as it’s FRIDAY – I’m linking up with Sunday at Adventures in Extreme Parenthood and lightening the mood with Special Needs Ryan Gosling!  Here’s this week’s contribution…]

Go check out what other special needs moms have done with this one here!  Because it’s Friday and we all need a little break…

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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37 Responses to The Four Letter Word.

  1. kcunning says:

    Whenever I’ve been tempted to use the word hate, I go with ‘frustrated’ instead. I don’t hate the fact that my son has AS, but it does frustrate me. I know it’s making things that should be only minor annoyances big deals. I know it’s making his future less certain than, say, his sister’s.

    But I also know that it’s shaping his personality, and some parts of that, I enjoy. I like his quirky humor. I like his perspective on things. I like the fact that he can be super focused when he wants to be.

    This is a timely post for me, since last night, we had a huge row over eating his dinner. HUGE. I had to keep reminding myself: this isn’t hate. It’s frustration. It’s being tired and at the end of your rope. It’s fear that the boy will live off of nothing but mac and cheese for the rest of his life. Hating the AS is hating something that shaped who he is, good and bad.

    • solodialogue says:

      Your perspective is the same as mine. I think we are both affected by the place our boys fall on the spectrum. Yes, there are others who fall elsewhere on the spectrum that have a different view and I respect that. There are parts of my own son’s autism that ate just simply “quirky” and made us both laugh -together. And I would not change those things for the world. They are part of who he is. 🙂

  2. Lana Rush says:

    This “hate” thing has really taken on a life of its own, hasn’t it? I’m still thinking on it myself. While I don’t think I’ve ever said “I hate autism”, I have said, “This really sucks”. I’m trying to decide if I see Lily as a “whole child” just the way she is or if I tend to think of her as “captured by something foreign that’s holding that whole child hostage”. Does that make sense? No matter what, it’s something I need to get my head around because I love that kid to pieces and that’s the most important thing I can communicate to her.

    • solodialogue says:

      I totally get what you’re saying Lana. It’s like – is something holding my child back from being who he/she “should” be? Or is this child, as is, who he/she is supposed to be? Can I get by without expressing how much I “hate” what affects my child in a negative way? For me, I don’t need the word “hate”. I just don’t. Everyone needs to do what they need to do. 🙂

  3. Lisa says:

    This is, really, one of my favorite posts. Karen, you nailed it. We can’t hate it and also try to promote acceptance and awareness. We CAN grapple with it, struggle with it, and admit that it’s hard…and when people ask questions, we can provide our experiences with it. But let’s not hate…hate just propagates hate and misunderstanding and ugly stereotypes. I prefer to take the other path…

    P.S. I love your Ryan Gosling!

  4. Well said. You should be a lawyer 😉 Seriously though, you’re absolutely right.

  5. Kelly Hafer says:

    Great post! I want to reply more, but it would end up being my own blog post. 🙂

  6. thank you for this. I see people saying they hate autism and I must admit it hurts my heart. I never say anything because I know we’re all on our own journeys with acceptance and we need less judgement in our lives, we get enough of it from the outside world. But, I also know my son is autistic, he will always be autistic, and he will be reading these things one day and I can’t see how that wouldn’t be a hurtful thing to read. I want him to feel proud of who he is all of it.

  7. Lizbeth says:

    Very well said. I don’t think I can say much more than that. Wait—I get dibbs on Ryan first.

  8. jentroester says:

    This is hard for me. I “strongly dislike” what Autism does to K. I become unbelievably said when I hear phrases like, I hate myself. I want to kill myself. Why am I so stupid? I know she says these things out of frustration, but she’s 8 and it destroys me. She wants friends, but can’t seem to make any. She is very aggressive towards her brother and father. She has begun to come after me, which she has never done before. She never seems at peace. She has anxiety like I have never seen. We, unfortunately, do not have any of the quirky, more positive things some people get from Autism. I strongly dislike that her life is so much harder than it should be. That is will always be hard. She is my daughter, and I would die this instant for her if I had to. I can’t imagine loving anything more. I won’t say I hate Autism, but I don’t love it. That might make me a bad mom, a bad person…but I can’t be OK with it. Not right now.

    I do understand when adults who are on the spectrum talk about the word hate. I DO get their perspective. I also understand that people are affected by Autism differently, and I, myself, am not going to generalize how every other person affected, or how every family affected, should think or feel. I don’t know their stories. They don’t know ours.

    I wish we could just stop searching for things to divide us. Stop looking for “issues” to disagree on, and just support one another. I don’t care if you are a pro vax or anti vax, bio med or solely evidence based, if you love autism or hate it. It doesn’t matter to me. I just want to be part of a community where I feel safe, and where my daughter can feel safe. Right now…after this week…I don’t feel that way at all. At all.

    • solodialogue says:

      I know. You make points that are not subject to argument. They are subject to understanding. I’ve lived pieces of what you have been through with your beautiful, still very young daughter and it breaks my heart that she feels and expresses such despair to you. I think we can’t help feeling that “hatred” toward something that hurts our children but whether we express it openly and vehemently is a personal choice. My choice is to put it on the shelf because I don’t want to create the confusion for my son who has difficulty sorting things out.

      I get what the autists say and I understand how they come to say it somewhat – not totally. But like any “family”, we’ll have our disagreements and differences. I’m sorry that you don’t feel safe. I hope that will change as time goes by. xoxo

      • jentroester says:

        It’s just hard when you feel you can’t tell you story anymore, w/out fear or being attacked…and it makes me fear what life will be life for K as she grows older. Sigh. Liek we need one more thing to worry about, right?

  9. Patty says:

    What a great and thought provoking post. I use the word “hate” way too often and I need to watch it. I do try very hard to not use it when referring to autism, though. I agree with you that we need to show people that it is not a death sentence or a curse. I wish my son had life easier, definitely, but it’s just not. Better to direct your energy at something more productive. Thanks for giving me something to thinka bout!

    • solodialogue says:

      Thank you. I’ve used “hate” too much too. To raise curiosity to learn, I think it’s important not to chase away people who want to learn more. Just one person’s opinion in a sea of divergent feelings and opinions. Everyone has their own perspective. This is mine. 🙂

  10. Slenderella Newman says:

    Heard from client and parent of special needs child: “I had to grieve the loss of the child I thought I was supposed to have, and fall in love with the child I do have. Once I was able to recognize and start that process, anger and hate began to weaken and fade away. I was able to be more present for myself and my child.”

    • solodialogue says:

      Thanks for reading, Slenderella! Your comment (unknowingly! – I’m sure) could launch some missiles from inside my community. And I would never want to discourage someone – who in her profession – talks to people who receive this diagnosis, probably on a regular basis. But now that you are here, let me share this with you and with others who read here.

      You are a strong and passionate person (a nurse as I understand it) and someone I would love to reach in my effort at increasing awareness of autism. Your comment about “grieving” is a phrase I’ve heard BUT do not feel. There are many adults with autism who pass through this blog from time to time, without commenting, messaging me privately or engaging me directly in comments for debate. I learn from each and every one of them. This phrase about “grieving” can be (and is) often perceived by autists as hurtful because it implies their existence is lesser – than a child that is born NT. That the diagnosis is about the parent rather than the child. And that the diagnosis is always negative. That should NEVER be the case for anyone. And that’s why autism awareness is so important to me.

      Autism is not a “death” sentence. There are many, many things about my son’s quirky behaviors that I love. He’s smart. He reads and spells beyond his years. When his interest is there, he excels. There are many, many challenges that parenting a child with autism entails. I do not “embrace” autism by any means. It’s very difficult. But neither am I grieving – I’ve always, always loved my child. There is nothing to grieve. He didn’t change who he was when I got the diagnosis. It just scared me. It scared me for his future, for dangers for things he must face in a neurotypical world that does not understand him. For discrimination, for bullying, for isolation. And it can start with how we all perceive autism.

      It’s just my opinion here – but I don’t think grieving serves any purpose save an egotistical one (and we all have egos so I don’t mean that in a negative way – just an honest way) on a parent’s part. Yes, it’s hard. It’s exhausting and for some parents, it’s harder than others. But we are who we are. Grieving me because I am a girl, instead of a boy, black instead of white, 9-toed instead of 10 is implying I’m less. I think it would be great if we just celebrated the good, cried for the bad, and understood the differences. If we understand, we can accept. No grief, no hate, no judgment.

      And I certainly don’t believe any parent ever “hates” their child. The “hate” is for the pain and hurt, some of the effects have on the child and/or the parent. I don’t hear us celebrating the victories of how far our kids have come because they have autism. But I want to say that yes, my child has come super far. I don’t know if he would have made such huge leaps if he did not have autism. I don’t know that he would know the planets by name, recognize a dwarf star or black hole or supernova at age 3 as he did, without autism. So there is that as well. Sorry, making a whole new post here… I hope I haven’t offended you by using your comment like this. And I welcome you here at any time! 🙂

      • Cindy says:

        I think that Slenderella is trying to say is that there is an emotional part when a parent realizes that their child’s life will have extra challenges that most others do not have to deal with. I know that when my son was born and my husband and I where told he had a cleft palate and would need surgery it made us sad and scared because it was the start of a journey into an unknown world of special care. With time we learned and grew with him as we faced the future together – today over ten surgeries later, he is an 33 year old adult but mom and dad are still there giving all the love and support he needs and we are all living happy lives – which is all we can ask for life to give us.

      • solodialogue says:

        Thank you Cindy. I think that what she says comes from her heart in a good place but I can also see how it would be hurtful to hear as an autistic person.

        Your perspective is one I can relate to – journeys into the unknown realm of special needs are scary and difficult. It’s a beautiful thing to hear that you are all living happy lives. Yes, I would agree that is all we can ask life to give us. We don’t always get it but we can work hard to try and get there. 🙂

  11. What a great post!! My favorite Ryan Gosling too!! Seriously though, I love how eloquent you were in stating your position. Which isn’t all that far from mine! 🙂

  12. “Never, never be afraid to do what’s right, especially if the well-being of a person or animal is at stake. Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.” ~ a quote on my FB wall today.
    I like the passion behind this post, your honesty, and strength. Thank you. “Hate” is one of my least favorite words.
    Hugs, Sam 🙂

  13. Mom2MissK says:

    Like Kelly said, I started to respond to your post yesterday, but ended up with a whole blog post entirely. I finally got a chance to write it up today. http://beyondthedryervent.blogspot.com/2012/03/one-in-million.html

  14. Curvyjax says:

    Thanks for writing this post. When my son was first diagnosed I hated autism, hated that it took away my hopes of a ‘normal’ future for my son. Now….not so much. I can’t say that I love it, but I do truly accept it. How can I do anything else when my son is so great? I love your ‘More than autism’ words picture – it shows perfectly what I have been trying to say in a blog post I am writing to release later this week. Would it be ok if I used it? I would link back to your blog if you are ok with it… Thanks xx

  15. Allie says:

    Thank you for this post. I can’t honestly say that at this point, or ever, have I really hated my son’s Autism. Did I fear it before he was diagnosed? Heck yeah. In my mind it was the worst thing a child could have . How very ignorant of me but all of the other NT parent’s felt/feel that way so I just figured it must be awful. Do I still fear Autism now that he is diagnosed? Yeah but in a different way. I fear how others will treat him and how many struggles he will have with everyday things. The fear full of ignorance is gone and now replaced with realistic fear.

    • solodialogue says:

      When I think about it, I’m sure I was there, hating and wanting to hate something – to release those feelings. Never, never my child. He is my greatest joy and parts of that come directly from his autism. I love to watch him tilt his head to one side as he is busy talking to himself in his own world, to see him become deeply absorbed in something to the exclusion of all else. To see him dance, or laugh or sing. I still fear the way autism takes him away from what everyone else understands. I guess, I fear the ignorance of others and what it can do. I have the same fears you do. Thank you for stopping in.

  16. C... says:

    I honestly can’t remember a time I said I hated autism out loud or in my head. I have heard other people use those words but I would never judge them either. Everyone has their own reaction or response to what life gives them and I can’t imagine how it feels to be in their shoes.

  17. Flannery says:

    Excellent post, friend.

  18. eof737 says:

    Your approach is a healthier option… Once we get into hate, it consumes us…

  19. Love this! I needed these words today. I am new to this, and fortunately had a good grasp of ASDs before becoming stepmother to a wonderful, quirky, and hilarious five year old boy. I will never hate his autism, because I want him to proud of EVERYTHING about himself. The more I learn, the more I try, I realize that there is nothing “less” about my boy, different DOES NOT mean less.

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