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"You Can't Hate Autism and Expect Acceptance"

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Well, I thought I'd offer up a different view from what I've been seeing lately.  This is from a blog called "Mama Be Good," and I highly recommend it.  

Mama Be Good


He's beautiful. He's funny. He's autistic. Mama's just trying not to mess him up.

WEDNESDAY, MARCH 28, 2012

You Can't Hate Autism and Expect Acceptance

April is Autism Acceptance Month, a month when many try to improve supports, services, and acceptance of autistic individuals.  This year, 2012, is the fourth anniversary of the U.N. designating World Autism Day, April 2nd.  Four years, one day, and a month dedicated to embracing autism.

And yet, some autism parents are still defending their right to say "I hate autism."

Why?  Those who have used the phrase say it's an honest assessment of the difficulties of raising an autistic child.  They cite the disruption to their family, the meltdowns, the sleeplessness, the worry.  And they say it shows support for other parents who feel ashamed to admit their feelings and who feel isolated because of them.

But wait.  There are many ways to communicate stress, support, and community without using "hate" and "autism."  No matter how much stress a parent feels, we can vent and support each other without putting down a biological part of our kids and of many adults.  We can recognize the emotions and challenges without encouraging hatred or hateful talk.

So why "I hate autism?" 

Why would a parent put her own child at risk for abuse and neglect by making it okay to say "I hate autism"?  Parents have immediate impact on how autism is perceived and how their child is perceived.  Parents are the biggest influence on their child's life.  They can protect or put their child at risk for emotional distress and violent behavior.  By one doing one simple thing.  The most important and predictive factor for negative outcomes in a child's life is one thing: a parent who fully and unconditionally understands and accepts him.  (The National Longitudinal Study of Adolescent Health, Journal of American Medical Association, Sept. 10, 1997.)

A parent cannot fully and unconditionally accept his child, but not "the autism."  That's not unconditional.  That's not acceptance.

Why? Children quickly and easily feel their parent's negative emotions and they internalize it, believing that they are at fault for their parent's stress.  While you think you can separate out "the autism" from your child, hating the negative symptoms while loving the child, your child doesn't make such fine distinctions.  He will recognize the feeling, maybe only subconsciously, and he will translate it to "I am acceptable only if I hide part of me.  That part of me is shameful.  There is something wrong with me."

Suppose a parent thought, "I hate the female side of my child: the hormones, the migraines, the mood swings, the possibility of promiscuity and pregnancy.  Parenting a girl is so much harder than parenting a non-girl."  The child doesn't think "You hate me being female."  She feels "You hate me."

It's the same thing.  "I hate the autism side of my child: the meltdowns, the sleeplessness, the fear of not knowing.  Parenting an autistic child is so much harder than parenting a non-autistic."  The child doesn't feel "You hate the autism."  He feels "You hate me."

"You hate part of me" equals "You hate me."  "You hate the situation that my brain wiring is causing" equals "You hate me."

Even if you reword the phrase, the feelings - anger, hate, and fear - are still there.  The anger leads to shame and aversion.  It prevents you from making a rich, complete connection to your child.  You'll focus on the negatives.  You'll feel disconnected and angrier. 

I don't want you to change your language.  I want you to change your language and your heart.  

And not just for your child.  "I hate autism" dehumanizes an entire category of people, including adults, including my child, including my friends' children, by reducing them to "autism, a hateful condition."  You can't hate only part of a person.  That's why we have laws prohibiting discrimination based on race, gender, national origin, sexual orientation, disability, medical condition, and religion.  We have these laws because you don't want people saying "I hate autism" to your child.  You don't want them saying "I hate autism and, therefore, I can't hire, befriend, be near, or like you."

Why is it okay for you to say it? Because you're the one doing the parenting and it's difficult?  Does that mean you hate parenting?  'Cause it's difficult.  You hate babies?  Marriage? Special needs children? 

April is Autism Acceptance month.  Not just awareness, but full-on acceptance, embracing the ups and the downs.  Not "I accept parts of autism,  the ones that are easy."  Not "I accept parts of my child."  But "I embrace my child, every single part of him, easy and difficult."  And "I acknowledge that hating an inherent, biological part of my child is unacceptable."  

I want to challenge how you think about autism.  Because I care about you, your child, our community.  I care about the world my child will live in.  I want that world to greet him kindly.  I want that world to be filled with people who lovingly embrace all autistic individuals for who they are.   

So that my child will never know a person who hates only a part of him.

****
by on Jun. 25, 2012 at 3:03 PM
Replies (51-55):
badgermom2012
by on Jun. 26, 2012 at 1:54 PM
1 mom liked this

I hope you keep speaking out on this topic, Emma.  If even one parent listens, then you'll have made a difference!  

Quoting kajira:

I agree with green.

I teach my son that autism has so many good things, but he'll have to work TWICE as hard to fit in. to do things in life... but you know what comes with hard work? a better appreciation for the simple things in life.

going outside is a struggle for me, but when I make it out my front door and the sunshine is on my skin - I stop and smell the wind, I stop and touch blades of grass, or dirt, I wander in circles in my yard and notice things that everyone else misses. the tiny spider web, being carefully watched by a tiny white spider on a flower, the fact that my potatoes are growing and the dogs haven't dug them up, the way when I go sit with my goats, that they jump up behind me and lean on me, and i'm the one person who can rub their face, or horns with out getting headbutted or poked or bit.

I move at a slower pace in life, but I appreciate the simple things so much more because it means so much more to me to even be able to do it.

What I cannot understand, is why your dreams for your child, are more important than the dreams your child would have for themselves... I know all I ever wanted to do was be a mom, a wife, and have a small farm of some sort.

those dreams I was told repeatedly growing up over and over again where not good enough, that I was n't striving for more, and it meant my dreams were worthless.... but it's what made me happy.

I guess, all I want for my son is to decide on his dreams, and I'll be there to support him. I'll never feel like he wasn't good enough because as long as he's happy and doing something he loves - that is good enough for me.

I don't need him to grow up and be a lawyer, or a doctor... my goal is just give him the tools to be a functional adult, in a big world, where he can be truly happy. If that includes grandkids, or a high powered career, and money, great.

If not, that's okay too, I'll love him the same even if he becomes a farmer, or works at the grocery store, or just wants to dink around with goats or horses and be a farm-hand or help out on a ranch and not get married.

though, he has expressed the desire to have a wife/kids some day, so if that's his goal, my goal is to make sure he learns how to be a good father and husband, even with his wiring, and how to work around it and communicate it, and how to pick a partner who WONT hold it against him or use it against him, or berate him constantly for it.

Quoting greenmommo:

Ok-YOU know I love you-think you are wonderful.

I think there is a substantial difference. Cancer isnt part of your personality (it can change you, sure) nor is juvenile diabetes. Autism is all about how the brain is wired. You can't surgically remove it or take insulin.

What people hate, myself included, are the violent manifestations. The sleeplessness, eating problems etc. Worse still the SYSTEM and how this country deals with it so that we are basically confined to our homes. None of those are the kids fault. A child cannot hear or feel their parent think "hate" about those things and not internalize that they are something "less."

As an adult with Aspergers (undisclosed, sure-but I KNOW I have it) I find if very hurtful to hear anyone say they hate autism, and for my kid's sake. So much so that I've contemplated not coming back in here several times. Knowing how much I like to be on here and live you ladies, that should tell you something.




Quoting Leobaby2007:

Quoting lin.r:

If you can't hate the autism side of your child or the "female" side of your child (from the article) but still love the child. How about if your child had cancer? Is it not ok to hate cancer then? Is this post saying that you can't love your child if you hate that part of them because as the post states " You can't hate only part of a person". Why not? Why can't you hate the mood swings, the anger the violence and still love your child. I do! I love my children very much. I like some parts of the autism, they are very bright and creative, the the rest I can do without.






Really good point. Why can parents hate cancer or juvenile diabetes and still love their child unconditionally but we are not allowed to hate autism and still be able to fully love our children?



That's just not fair and it's a huge expectation and a lot of pressure to put on us. I resent this article very much, but thanks for posting. I love to read different points of view. :-)



newmommy430
by Silver Member on Jun. 26, 2012 at 2:12 PM
1 mom liked this
I'm sorry if people find this offensive. It is just how I feel. I don't think anyone should dictate how someone else feels.

I hate how autism makes things that come naturally for some children a struggle for mine.

I hate how autism makes it hard for my son to tell me what he needs or how he feels.

I hate how autism makes simple trips to the dentist, doctor's office, etc a much bigger deal than it should be.

I hate how autism may put my child in serious danger because it makes it so he doesn't understand what danger is.

I hate how autism makes my son's future so unclear.

However, I love my child and that is why I try to teach him things that come natural to NT children.

I try to figure out what he wants and how he feels.

I try to make Dr/Dentist apointments easier even if my arms feel like they are going to fall apart from rocking him.

Because I love my son, I overly childproof my home and always keep him close to me when we are outside.

I love my son so much that I will read everything I can to help him have a future that is not limited severely because of his autism.
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novachick
by on Jun. 26, 2012 at 2:18 PM
1 mom liked this
I hate autism because my son hates it. He's told me so. It's unbearable as a mother for your child to have such an inner struggle and know it and hate it. I wish for whatever he wishes and he wishes he didn't have autism.
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momtoscott
by on Jun. 26, 2012 at 5:30 PM
1 mom liked this

 Okay, I am going to weigh in.  I will never hate my child, but I hate what causes him unhappiness.  SOME ASPECTS of his autism cause him intense unhappiness.  He wants to have and keep friends, but finds this extremely difficult.  He wants to stay in control of himself, but loses control and lashes out physically.  He wants to do well in school, but has a very difficult time staying organized and understanding abstract concepts.  He hates the differences between him and the "normal" kids, even though I tell him over and over that those differences aren't so important, and that those differences may be what make him happy and productive later in life. 

I understand that his different brain wiring is a blessing and a curse, and I am using both of those words deliberately.  I don't want my son to be like every other kid, but I want him to be happy.  There are times when his autism gets in the way of this, just like other conditions would, and when it does, I hate that and the pain that it causes.  Can he grow and adapt?  You bet.  Can he be a happy adult? You bet, but the road he has to go to get there is so filled with potholes.  It's not FAIR.  I know that life isn't fair, but it still sucks that he has to work so hard and try so hard and be so unhappy in the process. 

If I was a super-parent, I'd probably be fine, but I am an ordinary person who was an "easy child" growing up and never provided people with a moment's trouble.  I saved my rebellion and trouble-making and craziness for when I was out on my own.  I didn't have a lot of life experience that prepared me for handling a child with challenges.  I have spent more time in the Emergency Room, in doctors' and therapists' offices, and with the principal and guidance counselor than any parent in my social circle.   I don't wallow in this fact, but it has affected my opinion of my son's conditions. 

Is it wrong for me to hate my child's violence?  I never raised a hand to either of my parents, or anyone who wasn't a sibling.  My son has almost killed me.  I don't hold that against him, of course, but it is not a little thing that has no effect on how I think about his ASD.          

Would I prefer that my child not be autistic, not be himself?  No.  But I would be lying if I said that parenting him has been easy or always enjoyable.  I love my son.  The way his brain is wired makes him interesting, and he is a wonderful kid who I think will make some real contributions to society.  But I HATE how hard life has been for him so far, despite my attempts to give him a smooth, soft surface.  It is not an easy journey for either of us.   

 

 

badgermom2012
by on Jun. 26, 2012 at 6:15 PM

BUMP!

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