I am literal, help me understand!


I have so many thoughts in my head and I don’t even know where to begin but here we go (hope you enjoy the ride & don’t throw up!).

The other day the CDC came out with new statistics and everyone reacted.  People (Autism Speaks) started using the word epidemic.  I found this offensive.  I know that epidemic is sometimes used in a good way but mostly it is used to describe things like the plague.  I am on many email lists so I received many emails about this topic.  There was also a flurry in social media.  And then to top it all of my husband felt the need to show me a news report because he apparently thinks I don’t pay attention to news related to autism.  I couldn’t avoid it if I wanted to.

I tried really hard to get past the word epidemic and the other various alarmist language.  I read about how there should be more services for adults and children.  That is true.  But it really goes deeper than that on so many levels.  There are kids that don’t get services and then there are kids getting services by abusive people.  There are kids getting services by people that don’t get it.  Not all of them because clearly there are some awesome service providers out there.  But very few people get it.  You can’t crawl inside my head to know how I feel.

Somewhere in all of this there has been an increased flurry in autistics vs. parents.  Maybe it started because someone like me reacted to how a parent reacted to the statistics.  Words like cure, treatment, cause, national emergency, I hate autism, or autism sucks were used in a parents reaction to the statistics.  An autistic says they are offended and a parent says something along the lines of:  I love my child but I am frustrated and that is how I chose to express my feelings.  The parent can’t understand why the autistic is upset.  Everyone is upset because they feel offended, or defensive or all kinds of other emotions behind the words.  The parent is trying to do their best.  There was a great post written over on Just a Lil Blog about how these emotions get in the way.  I hope Jim doesn’t take out a restraining order since I have referenced his post in one form or another about 5 times now.  But it really was good.

I liked the section where he removed the word autistic when he was speaking about his kids.  I also expressed this to someone today.  They were commenting about their child and about how they don’t want to be told that they should embrace it.  I wrote back:

I am not asking you to love it but I am asking you to stop saying that you hate it. smack me, unfriend me, whatever you feel necessary to do but please I respect you and I have respectfully tried to explain how these words make me feel (and potentially my son). Yes there are certain things that I can’t do or are harder for me to do, maybe because of autism, maybe because of my personality because really until recently I just thought I was shy or introverted. I have always been bright, great memory and more effecient then most people but until recently I just read that as gifted. Gifted introvert? Aspergers? I am a person and these are my traits, if you hate my traits you hate me. I get frustrated with my son’s behaviors sometimes just like anyone else. Frustrated with me, sure, I can live with that. Just as I am sure you are frustrated with me right now for posting this but I just needed to get it out of my head (like sheldon & the flag knowledge on The Big Bang Theory) laugh, embrace the quirky, help yourwith what he wants help with and accept the things he doesn’t want help with. And hope you will still be my friend because I want to have healthy conversations with people, I want to be respectful and I try really hard to not get offended or upset. We all need to work together to get the appropriate services and acceptance.
I want to have a healthy dialogue, I really do but it is difficult because the words are hurtful.  I am sorry for what may seem like a string of thoughts but I have the following thoughts:
When I was younger and bullied I was told to say “Sticks and Stones may break my bones but names will never hurt me.”  It didn’t work then and it doesn’t exactly work now either.  The words hurt.
I have also read great posts on this topic on Jill Smo’s blog.  (her and Jim talk a lot on Twitter so maybe they will hire the same lawyer- joke, I can joke but always afraid people won’t get it!!)  I try to not see things as black and white but being literal is part of autism.  As parents we try to explain that all the time to teachers, whether we ourselves are literal or not.  We see it in Sheldon on The Big Bang Theory every week and we can all laugh together about it.  We are literal, as adults we try to see past the literalness but it is difficult, especially when emotions are involved.  Please, please, please try to remember that when you are choosing your words or when an autistic becomes offended with your words.  Look at your kid would they take the words literally and be hurt by it? And when they are upset they struggle to communicate and you as the parent know that they are good hearted and don’t mean it when they throw something or yell.  They are struggling to communicate appropriately.  So when I rant please understand I am trying very hard to control my emotions but sometimes it just becomes too much.  remember that if you get a hurtful comment on your blog.  Please, please.
Please someone, in a logical, (read aspie friendly) way explain to me why in our society we need to be politically correct and not use certain words (I could list many here) because they offend someone- another race, ethnic group, or disability?  Why I have seen so many parents stand up and say “Don’t use the R word, it is offensive”.  So many parents are so wonderful and stand up for other disabilities and other differences.  They say don’t bully other people.  Accept everyone, don’t be racist, don’t judge someone for being gay, all good messages, but when an autistic says please don’t say “hate”, “sucks”, “cure”, or otherwise make us feel like rejects, unwanted, hated, annoying, or otherwise.  We are told to not be so offended.  I am not trying to start an argument,I have never met a parent through social media that didn’t love their kid, I truly believe there is no malice.  I am seriously, desperately trying to understand.
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Comments

  1. Quiet Contemplation says:

    From what I can tell, it literally seems to depend upon how the parent believes their child acquired autism. If they believe that it was vaccines, or some kind of environmental toxin, they see it differently than someone who thinks that it’s mostly genetic and their child was born that way. I could go on and on, but that’s what I’ve noticed. And, I believe you are right, most parents love their child and want what’s best for them.

    I also think that the numbers being released a few days before Autism Speaks big Light It Up Blue campaign is suspect to me, but since I have no proof, there’s nothing I can really say about that, other than I have my suspicions.

  2. Okay. I’m going to do my best mid-coffee 😉

    First of all, I of course can only speak for myself. I can try to explain how other people feel, but not having experienced their world, I can only do my best. I am coming from the perspective of a parent with a very “high functioning” autistic child, with no real behavioral issues and relatively good language skills. Our challenges are VERY different from the challenges of a family living with “low functioning” autism. (I put that in quotes because there’s still some debate about the validity of the term “functioning,” but it’s the only language I have at my disposal at the moment).

    First, I’m going to show you a post that will likely very much offend you, but it explains the reality of a family living with a very different kind of autism that I live with: http://pugariffic.blogspot.com/2012/03/i-hate-autism.html I want you to see it because my perspective is nothing like this mother’s perspective, and you need to know that these two perspectives can exist simultaneously; also I’m going to reference it later.

    So, for me… I have said things like “I hate autism,” and “autism sucks,” yes. Yes I have. But I’m one of those people who doesn’t give that much power to language. I’m NOT literal; I see and I understand the nuances and the implied meanings and the intention behind the words, and the words themselves don’t carry that much weight for me (for the most part). So when I say “I hate autism,” what I *actually* mean is “I’m feeling very frustrated with my child’s challenges.” I don’t mean that I feel rage or anger. So, in my case, what I need is for somebody to tell me how my words affect them; but in a nice, and respectful way. “I’m hurt by your words and this is why….” I can hear that, and I can recognize what my intentions and my real meanings are, and I can change what I say, because I don’t want to offend you.

    This has happened, for me. Somebody has explained it and I have taken their words to heart. I have pledged to be more mindful of my word choices in the future.

    HOWEVER, I have the luxury of being able to be this flexible about it, because my son is so high functioning; not all parents have this luxury, and in order to understand their stubborn refusal to change their language, you have to understand what their world is like.

    As I said, my experiences are very very different from the mom who I linked to up there. If you read the post, you’ll see the raw emotion and frustration, and yes anger. But her experiences are so different from yours and from mine, it’s like we’re not even talking about the same thing. There is an ENORMOUS difference between “high functioning” and “low functioning.” So when you tell her that her words offend you, she thinks “my child is nothing like you. I’m not even talking to you or about you.” She isn’t concerned about awareness and understanding, she’s just trying to get from one day to the next; from one hour to the next.

    You said up there “The parent can’t understand why the autistic is upset,” and that goes both ways. The autistic, as well, can’t understand why the parent is upset. We need to be able to see the world through the eyes of the other person, or at least try to.

    I’m ending this abruptly because that’s all my brain will allow at the moment, but I’ll come back and answer questions if you have them, and you probably will 😉

    • You did very well mid coffee. I read Rhonda’s post & commented there. And not that I was offended by her post. I think I explained I had been offended by “I hate Autism” and that before I tried to remember that previously I have tried to be supportive of people on a different journey. I will try to remember that and try to separate it from myself. And try to see that they are just that frustrated, not with the child but with the behaviors. I wish that I could help her and Tommy, provide them with a better option. I wish I could change the world.

      • You ‘n me both. Too bad I didn’t win that lottery yesterday 😦

      • Well I thought i left what I thought was a reasonable, even supportive, comment on her blog. She then messaged me through Facebook calling me an idiot. Words can’t express how I feel. But I don’t need this. I’m done.

  3. jentroester says:

    I think Jill did an excellent job. Better than I would have done, even after a full coffee ; )

  4. I have an opinion about some of this. Quiet Contemplation (@Soundless2) has a very good point. The word “epidemic” depends on your theory of what causes autism. I’m convinced it is genetic, and so are most scientists from what I’ve read. Eighty years ago autism didn’t even exist. In the 1950s, there were hundreds of cases. Was that an epidemic? We went from zero cases to hundreds of them. By the 1970s, there were thousands. But they were just discovering what autism is. Of course, more cases would be discovered. We are still discovering what autism is. Nobody really knows. Diagnostic criteria changes over time, but that doesn’t change the people who have autism, it only changes the number of diagnoses. With DSM5, there will probably be fewer cases as they get rid of Aspergers, but the real incidence of it will remain the same, unless you believe it is environmental. I do not believe there is any environmental influences at all, I think it is 100% genetic. Just my opinion though.

    Also, I read the “I Hate Autism” post. The thing that bothers me about high functioning and low functioning is that it goes back to that false idea that autism defines the person. If I know an NT guy who has anger management problems, did poorly in school and wound up in prison (which many NTs have), should I say I hate the “neurotypical” because of what it caused him to do? Does that guy have a more “severe” case of “neurotypical”, whereas my nice neurotypical friends are “high functioning neurotypicals”? If someone is born with an IQ of 60 and they are not on the autism spectrum, should I blame “neurotypical” for their intellectual disability? A lot of people blame autism for things like that. Too many people fail to realize that autistic people also have personalities that affect their behavior too. Not all of them had good childhoods, some of them have PTSD from things that were beyond their control. We’ve all heard the old saying, “autism doesn’t define me”, but so many people forget that and they think that every single thing an autistic person does is because of autism. Autism is defined by communication and social differences (I don’t like the word “deficit”), intensely focused interests and repetitive behaviors. Any other behavior that some autistic people have is just because of that individual’s personality or specific life situation and has nothing to do with autism. ADHD, SPD, Crohn’s Disease, aphasia and all the other comorbid conditions are separate conditions and austim should not be blamed for any of that. All of those conditions exist in some NTs too, but no one would ever blame it on being neurotypical. Autism is really an awesome thing and people who have it are lucky. Those of us who do not have serious comorbid conditions are called high functioning, but we are just as autistic as the most serverely autistic people out there. Here is an analogy: Some men seem more masculine than others because the culture defines what “masculine” is supposed to be. Does that mean some men are more male than others, or are they just as male with some different personality traits?

  5. Elaine Walton says:

    I have a newly diagnosed 14 yr old grandson, who I have brought up. He has ASD aspergers. I have been searching the net etc.for information that would help us both. I am new to twitter and have found many useful blogs. The best ones I have found are the ones from people who have aspergers themselves. It helps ME understand HIM a lot more, and I am so grateful for this. My grandson is very much in denial of his diagnosis and won’t accept it. HE is the one who keeps saying he feels ashamed. It came as no surprise to me, as I’ve known for many years he had problems. Getting the authorities to get him diagnosed was another matter. He is now years behind in his education (they are looking into specialist schooling) Any help I can get to help HIM understand what he is feeling is normal is a help. Thank you so much xxx Elaine

    • Took my son about 6 months to start to accept it. Is harder when find out later there may be support groups near you? My son went once but liked meeting another teenager like him. Also near us there was a teen social skills group at the local autism center. He didnt like it but your grandson make like something like that.
      Great books:
      All cats have aspergers (picture book but my son loved it when diagnosed age 13)
      Be different by John elder Robison
      Look me in the eye by John elder Robison
      Freaks, geeks & asperger Syndrome by Luke Jackson ( he was 13 y.o when wrote it)
      The movie bout temple grandin was very good & my son enjoyed.
      My son will not use twitter himself but I do share info w him. Lots of aspies talk on there. When we remember we use #aspiechat and/or #aspieparty
      There are lots of great chats about sensory issues and struggles w daily life.

      Sorry for delayed response!

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