Thursday, June 6, 2013

Why I think it is okay to hate autism ...

If you just read that title and are all set to argue, you might be autistic, but please hear me out. 

Most people who say they hate autism (and yes, I am sometimes one of them) don't see autism as synonymous with autistics any more than depression is synonymous with the depressed.  I have depression and I HATE it. I have two children with autism and sometimes I hate autism.  I do not and could never hate them.

Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself.  OK, let's take a closer look at that.  In our family, my older son, Joe, is fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint.  My younger son, Alan, is frequently violent, OCD and mostly non-verbal.  Both have depression on occasion.  OCD, violence, and depression are all considered co-morbids.  And according to autistics, it is okay to hate all of those things. 

So, why is it okay to hate the co-morbids but not the core?  While Alan's core disorder is autism, Alan IS NOT autism!!!!  He is so much more.  He is giggles and cuddles and adorable blue eyes.  He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.

The autistic point of view (I believe) is that since it is an operating system they are synonymous.  The person cannot be separated from the disorder.  I suppose they are saying it is like race.  How can you separate the race from the person?  You can't.  So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos." 

And yet, I think that telling people not to hate autism can be very alienating to families who are struggling just to get through the day living with autism.  Cleaning up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory induced pain -- these are all things that are intrinsically difficult.  I can't imaging anyone cleaning up vomit or watching their child get called names for being different having a lovely warm fuzzy feeling about autism.  Some families are in the trenches with these things and they can't see beyond their current, overwhelming, sometimes painful circumstances.  These are some of the families who probably say they hate autism. 

If an autistic were to tell me that he hated neurotypicality, I would not take that to mean that they hated me.  I would take that to mean that I confused them and/or they didn't understand me.  Is he a better person if he spells out that important difference?  Perhaps.  But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.

Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them.  They are using what I would call a neurotypical shorthand.  If autism is an operating system, I would have to say it is an Apple.  I am a PC/Android person through and through.  Anyone who knows me well has heard me complain of Apple products.  As an operating system, it confuses me.  So yes, I have said I hate Apple on occasion!  That said, I love both of Alan's iPads for very different reasons.  His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment.  So I may hate Apples, but I don't hate Alan's iPads.

I have heard more than a few people say that they hate their hair (usually when it is curly).  I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids).  So if it is okay to hate part of you and wish it could change, why is autism different?

If my older son were to tell me that he hated his little brother, I would jump all over that.  If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him.  Alan's autism affects everything about our family -- our ability to go out to dinner, over to Grandma and Grandpa's house, vacations and even the grocery store -- and so we all are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person. 

He doesn't ever say it, but sometimes I think Joe hates his own autism. He hates that it is hard for him to make and keep friends because he perseverates on bizarre topics. He hates that he does things so much differently than his peers.  That said, the kid has incredible self esteem!  So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.

We live in a world where we fiercely defend freedom in so many realms.  It does seem a little bit unusual to me that we are also quick to condemn people who don't feel the same way we do about autism.  Am I a better person if I love autism than if I am overwhelmed and confused by it?   Regardless of how you feel about autism, all people deserve respect.  Perhaps instead of getting angry at, or feeling sorry for, people who hate autism we should attempt to understand why they feel that way.  These families don't need condemnation. They need support and understanding. 

In many ways it is like telling a drowning person not to hate the water.  In their overwhelmed state, that kind of choice is not really possible for them.  But, lift that person out of the water and into a boat and then they can see how beautiful the water is.  They can see it in a different light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.

We aren't going to get very far spreading the message of autism acceptance if we judge those who don't agree with our viewpoints.  Instead, if we work to understand and support others, we may find that we don't have so many differences after all.

23 comments:

  1. Wow, what an amazing post. I love the analogy that it's like telling a drowning person to not hate the water. Powerful and real. You have a new follower because at times, hate autism too. I wish my son didn't have to struggle with it. He deserves better than having such a hard time pronouncing his name and understanding emotions. Agree to no judging as well! Let's understand and support. Because we are all more alike than different.

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  2. Thanks, Kristi!

    I thought that was a great analogy too. I wish I could say I said it first but someone said it to me once and it just stuck.

    I actually had a lot of comments on this post (10?) but they were lost when I eliminated Google + comments which is another reason I didn't like linking my blog to Google + but that's another story ... hmmm, maybe a future blog post??

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  3. What a lovely post! Thanks so much for differentiating autism with the person. I don't think anyone likes autism either, however, we can always LOVE the person who has it. Thanks for linking up with us @ My Favorite Posts SHOW OFF Weekend Blog Party!

    Jessica
    The Wondering Brain

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  4. Great post. I think there are more adults with autism that want a cure than the popularity of the ND movement seems to indicate. Here is one! http://autismgadfly.blogspot.com/

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    1. Thanks. I might have to read more of that man's blog. I also have questioned that "every" autistic feels the same way. I have been told just that by several adult autistics and that bothered me. I think it is seriously rare that everyone in ANY population agrees with ANY viewpoint.

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  5. This is well put, I agree with you.

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  6. Thank you, thank you for writing this. You have a new follower here as well. I know I've been at this crossroads between trying to convey that while I will always love my kids, I cannot be warm and fuzzy like some that say they'd never choose a cure or that they wouldn't want their kid to not be autistic. I am sometimes bitter, and think that they live in candy coated realities to say such a thing. I hate the constant struggle we as a family go thru. I hope in time it gets easier to deal with such confusion and emotions, emotions that cause ridicule and shame if shared. Because sharing my feelings, no matter the intensity they hold they are there, and sharing is the only solace.

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    1. Let me explain something to you about us mothers.Of course we wouldnt want or choose for our children to be autistic.who would want that.Yes we want them to cure our kids.If i could wave a magic wand and heal my son i would but thats not going to happen.Instead i make the best out of what i have.Ill explain it like this to you.This is the difference between you and me.The doctor tells me I only have a month to live.I can sit there for my last 30 days and be bitter and miserable or I can live every minute till i die the best i can.I would make the most out of my last 30 days...You can sit there and keep on being bitter and miserable about a situation that you cant change or accept it and make the most out of what you have.No its def not candy coated in my house.I have been in a situation where it seems so horrible that its like you cant even see anymore.I have had a very hard life.I dont sit around feeling sorry for myself and being miserable.Yes its a constant struggle everyday and if I had a choice i would not want my son to have to be in this world and struggle everyday like he does.But I do have this choice to make the most out of what we have and be as happy everyday with what we have and how we are cause sitting around and wishing my son would talk is not going to make his life or mine any better......

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  7. I have autism too. I have days I hate it. Because I cannot leave it. I cannot walk away from it. But I have more days that I am proud of it because I turned out to be a very successful adult with it.

    I am a cancer-fighting champion. I have Asperger's Syndrome. I am a woman who played men's baseball (not softball) for 12 years and 2 years of pro tackle women's football when I was 51 and 52 years of age.

    Yes autistic kids do grow up to be adults. We have autism but we are not the autism so it is okay to hate it. It is not okay to hate the person, the child, the adult who has it. It is not their fault they have it anymore than it is not my fault that I had breast cancer and survived it.

    We don't ask for these things. We just live the best way we can. Thank you!

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    1. Thank YOU, Norine! I agree with you completely. For high functioning individuals there are some definite perks that go along with any minuses. And you have certainly made the most of your life. Way to go!! There aren't that many perks for the lower functioning folks which is why I'm still hoping for a cure for my younger son. Sigh.

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    2. I have a non verbal son who is severely autistic..Do not like the term low functioning.You are not putting anything positive out with the word hate.words are very powerful and i disagree with everyone on here.It is a struggle everyday to live with someone who has autism.I do it everyday.I love my son and I accept him the way he is.You should never use the word HATE at all when you are talking about your child or anyone else for having a condition.....You hate a person who is doing wrong and not living there life right...killing someone.You dont hate Autism.It is what it is and if people in this world would just stop trying to fit in to what this dam society feels is normal than we would be alot happier in our lifes..I dont hate Autism.I hate ignorant people who judge other people for there differences and cant believe you have 2 sons with Autism and put this hateful blog on.you are not a person I would ever want to be a leader or a speaker on this topic.Stop writing this horrible stuff and write stuff like this..Tell people to love themselves and dont care about what anyone thinks or says.God made everyone in his image.Lets start to love and respect everyone and there difference and stop using the word Hate..you cant make any positive changes or help anyone when you are starting it with an ugly word like that.

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    3. Stop sitting around and waiting for a cure.They probebly will never get one.It is what it is.I pray for it everyday to.But I cant think about that.I have to be strong and get up and deal with what I have.I need to put up a site because this one is not going to help anyone to ever make positive changes or love themselves.

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    4. You say tomato, I say toMAHto ... The way I see it, Vanessa, is that every one of your comments is filled with hate even if you don't use "hate language". I never said I was sitting around waiting for a cure. I also don't think that a child that is physically abusive to his/her caregivers is "OK" or should just be accepted and loved for the way he/she is. Society has certain standards and they are not all wrong. Does it matter if someone makes eye contact, smiles enough or understands another persons feelings? Not usually. Does it matter if they are 20 years old and like to run around with no clothes or cross a highway because they like to explore? Well yes, it does. When a 3 year old swats at you because they cannot communicate any other way, it is an inconvenience and you try to teach them a new way to communicate. When an 18 yo MAN does it, it hurts. You might end up in the hospital. Is that OK because "that is how he expresses himself"??? So yes, at times I hate my situation. Many times hating your situation is the only way to make positive changes. Thank you for reading even if you didn't understand.

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    5. I do understand everything you said and you are the one with the hate filled comments.Its not ok to hate your situation.You will never be truly happy until you accept what you have no power over.Of course im not saying that if I had the choice that I would want my son to have autism.Im saying that it is what it is and I deal with it and make the most out of it.I am not filled with hate.you have the hate site on autism.not me.

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    6. If you put this kind of site on not everyone will agree with you.I am not scared to voice my feelings and disagree when I read things that dont sit right with me.Everyone on here agrees with you.I do not.

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    7. I respect that you disagree with me, and it is the reason I continue to respond. When you say "You will never be truly happy" and "stop sitting around waiting for a cure" (I'm not) and call me "bitter" and "miserable" that sounds hateful to me. When you post three separate comments each time you post, that seems antagonistic. When you don't appear to read what you say (because of poor grammar, punctuation, etc.) it sounds like a rant to me. You say you hate other people who judge but that is exactly what you are doing. You are judging me. In the second paragraph I say SOMEtimes twice. MOST of the time I do NOT hate autism. But yes, when I am being beat up by my teenage son or back in the days when I was cleaning up his room every day because of his poop smearing, then I hated autism but NEVER Alan. I also said in the original blog that I use the term "hate" (and I suspect most other people do too) as a shorthand to say it confuses and frustrates me. I just think that if your goal is to get me to accept autism then ranting at me for using the word "hate" is counterproductive. I do accept my situation. Some days I am frankly thrilled that I don't have two typical teenaged boys. But if a cure comes along (and I believe it will in the form of medication) I will certainly be taking a closer look if for no other reason than I don't want my younger son institutionalized because he is severely autistic and there is no one in my family capable of taking care of him when my husband and I are no longer able to care for him.

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  9. I read your article. I have Autism and I actually agree with every word you've said. I even wondered if when my parents and older sister found out I had it, felt as you described, hating the Autism but not me, in fact now I really believe that was how they felt. I'll admit, I've had moments where I hated my Autism, it's a real pain in the neck at times! The only joy I have about having Autism is knowing that I'm not normal (well, nobody is normal anyways) and I am special.
    I really hope that if anybody has a real bigotry against people with Autism, that they will check out what you have to say. These are real heartfelt words and very powerful. It really has helped remind me of what the difference between loving a person, and hating the problems is.

    -Bonnie O'Conno

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    1. Thanks, Bonnie. I should have responded sooner. Yes, none of us are "normal" (thank God!) and sometimes autism is a pain in the neck. Sometimes "typical" kids are as well ...

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  10. I do not care about society and there standards.Did not say they were wrong.I dont agree with them or live my life by them and futher more i did not say its OK for a child to hit there caregiver.If someone has a condition its not the same thing.You dont hate it you deal with it and try and work with them and change it.I have made so many positive changes with my son.Hrs doing alot better than he was cause ill never give up on him and we work with him everyday and hes in constant ABAtherapy and has a one to one at school that i had to fight to get for 7 years.He goes to a special needs camp that I finally found for him.No camp wants to take as you say low funtioning autism.Its so messed up that people have to put a label on a person and judge them and use harsh words like HATE.My comments are not hate filled at all.I speak from my heart.I have the right to disagree with you and this site.You say tomatoe,I will say how I feel about it.thats my freedom of speech.Reality is that they will never get a cure for this.Thats just how it is.You can live your life happy with one arm or keep wishing for two arms!!!!!

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  11. How can you hate the very thing that makes up your children, you fear it because you don't understand it.

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    1. True, I do not always understand it, but I don't fear it. I want to eliminate the literal thinking, the irrational fears and the aggression because I feel it limits the boyz. It is one aspect of their personality, but I don't think it "makes up" my children any more than their Irish and German ancestors. If they were able to have meaningful lives I would have no desire to eliminate it. My older son who is verbal has told me repeatedly that he wishes he didn't have autism so why should I embrace it?

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  12. Your children's autism is a part of them, if you hate autism then you hate your children.

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