#ILoveAutism


This whole week has been so emotional and all of these blog posts and discussions and arguments.  It has been so draining, at least for me.  I did not start blogging for this.  I came here for support and to support other parents.  But we can’t do that if we are fighting.

I was starting to accept why someone would say something like I hate Autism or Autism sucks.  I have actually been there before and wrote a post about how we need to cheer each other on and enjoy the scenery, no matter where we are in the journey.  But my mind started to go elsewhere and I was starting to get offended by words. I was trying to ask questions and some people very nicely answered my questions.  But wow I also got some anger unleashed on me.  Which I feel straight to my core and I just don’t need that.  It was actually very upsetting to me which I don’t know maybe that is because of my autism.  One of the comments was about how I clearly high functioning and I had to chuckle about that statement as I was trying to painfully navigate my way through the kitchen this morning on a “simple task”.  I have read lots of great posts about what is high functioning really mean and then I started to think about maybe I shouldn’t be involved in these discussions. But really everyone is right, we all have different experiences and we all have different emotions attached to these experiences.  I get it, I really do.  I remember when my son was having extreme behaviors.  If I was blogging then who knows what I would have said!

And then I opened twitter.  Last night I had tweeted about how I was waiting for exhaustion to set in for my son so that I could go to bed.  He had actually stayed up the night before and was now well past the point of exhaustion.  But he wouldn’t eat, he wouldn’t take his pills, he wouldn’t sleep, he was just starting to rage.  I was working with him and got him settled but knew I couldn’t go to bed until he was asleep.  This morning I read someone’s response telling me to try Melatonin.  I smiled, that is what I would tell another parent too.  But our sleep issues here are much more complex and how I wish a melatonin pill were the answer.  I thanked them and explained in 140 characters that he takes trazadone but I do take melatonin.

Because I was/am tired and all of the crap already processing in my head I almost ended the tweet with #Iloveautism or #gottaloveautism.  But I meant it kind of sarcastically.  And then I had a Sheldon moment would I need to say “That’s sarcasm”  but then I thought wait, what if everyone started saying “I love autism” in a snarky way instead of “I hate autism” when they were having a bad moment.

I guess do with this information what you want.  I just really hope that the fighting ends.  Tomorrow begins Autism Awareness month or Autism Acceptance month and notice we can’t even agree on that.  Although really the month should be called.  “Give us the damn services and respect we (autistics &/or our autistic kids) deserve Month”

We all need to find a way to support each other.  We all need support, not anger from other people within the community.

Update:  Or apparently today begins the month of “Give us the damn services and respect we (autistics &/or our autistic kids) deserve Month”  I promise to have less rambling post tomorrow but I had to get this out of my head.  And sorry didn’t know today was April 1.  April Fools!  I seriously need more coffee.

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Comments

  1. Jill (@Jillsmo) posted about all the arguing too. Guess I was lucky enough to have missed out on all of that because I have been busy lately. I tweet a lot of stuff about how great it is to be on the spectrum, and often no one retweets those tweets, or if they do it is one or two autistics. I have wondered if people think I am just a brave autistic guy who is trying to be inspirational by making the best of what some people think would be a horrible situation. But that’s not the case at all. I like to try to educate misguided people who have a very inaccurate impression of what autism is. It’s a gift and a huge collection of incredible abilities. The people who autism sucks or say they “hate” it, are conformists who think there is only one right way to be. Pitiful!! The thing that bothers me more than anything else is when people blame autistic for being bullied, as if autism causes bullying. No, neurotypical insecurities cause bullying. If everyone were autistic, there would be no concept of bullying. Well, that’s why I started my blog, to educate people about the real experiences of having autism and set the record straight that autism is not a disorder. It’s really an awesome way to be.

  2. I do hope you got some sleep eventually.

    I love my girls but the nights they don’t sleep, which turn into weeks of no sleep are very challenging.

  3. You have no idea how much you made me laugh by saying this month should be called “Give us the damn services and respect we (autistics &/or our autistic kids) deserve Month”

  4. Neo,

    My heart goes out to you. I learned last fall that the tiniest commnet slip in the wrong place can lead to extra stress.

    Like you, I see both sides. My son has extreme behaviors at times and it is so hard, yet the whole “I hate autism” notion hurts me.

    Advice helps little at those moments. You just grind through. Ultimately, knowing there are other people out there, like me, like my son helps an awful lot.

    As I read your post, I empathized and felt less alone. I even remember my parents giving me Trazedone when I was a teen and had terrible insomnia.

    Seeing all of these sides, having all of these thoughts, connecting everything is hard today but an exhaltation will come. The insight and wisdom will suddenly burst into an awsome article filled with insight wit and wisdom for us all.

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