• Understanding Autism from the Inside

    “Academics came easily to me. The rest of life—not so much.”
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The Constant Demand, and what they DON’T SEE!

You are so organized.  You great at this.  You have gotten over your autism.  You are successful.

They don’t see the tears.  They don’t see the meltdowns.  They don’t see the panic attacks.  They don’t see the bolting up in bed at night soaked in sweat, head reeling with all the things that are not done, and they don’t see that this ONE thing that you are doing so awesomely is the ONLY thing that you do because it takes every single thing that you have within you to do it!  They don’t see the costs.

They don’t see that what looks like an awesome job took 12 hours of stressing and another 12 to complete and you are on too much coffee and no sleep in order to submit the perfect mound of paperwork.

They don’t see the dinners missed with your kids.  They don’t see the constant locking yourself away; they don’t see the many days in a row in the same outfit, with barely brushed hair.  Does the school bus driver notice, I’ve worn this sweatshirt three days in a row? Maybe.  Well, at least I didn’t sleep in it, and I’m out of my PJ’s.

Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.


  1. When I confided in someone who is an aide in an autism unit that I recently realized I was on the autism spectrum, she said “Well, it is easily controlled now.” Really? If I had known when I was going to have my next meltdown, I would have invited her to it.

    • Easily controlled now? Wow. I’m sorry and this worries me for so many reasons since this is coming from an aide in an autism unit who should know better! But ya know what really concerns me? The idea that it NEEDS to be CONTROLLED somehow, or that we could or should control other people. I understand what she likely meant, but coming from (as you know) inside the spectrum, its a little insulting, and condescending. My Autism isn’t a disease to be controllled, but an intricate part of who I am. Do I suffer at times from it? Yes. But I want to say I suffer more from the world and people around me than from my own aspieness. Perhaps it is time to control the world, rather than them trying to control us. Perhaps, it is others who need to change, who need to learn to blend, bend, and “act” differently. Perhaps, WE are just what this messed up world needs…

      I think today I am going to be my complete and UNCONTROLLED mess and embrace it! Thank you. I kind of needed this boost that my little rant gave me this morning!

      Loads of hugs!

      • Hello Jeannie,
        I just discovered your blog, and I completely agree with you about the world needing to adjust to who Aspies are, not always the other way around. That negative view is the unfortunate deficit or medical model. My husband Ken and I continually work against it–with greater or lesser success, depending on the moment! Societal forces want us to see him as the weak link; we’re trying to push back. He was late diagnosed (I call him my surprise package!) and I am not autistic, but we’re doing well with lots of effort. We started a dialogic blog–a conversation between us–in order to make some of the hard relationship work we’re doing available to others so maybe we can support someone out there who is struggling in some of the same ways. But we–as I see that you do too– hope to help change people’s attitudes about autism, help remove the stigma and the stereotypes. At least from our corner of the planet in Edmonton, Alberta, Canada! Your use of the word ‘control’ and wanting to take it back is apt. Ken coined this phrase which relates: “Autism is not a disease to be cured, it is a difference to be curated.” I love it! I enjoyed your blog and specifically your comment here very much. Best wishes with everything,

        • I am glad you found me here Christina! And, yes I love the “difference to be curated!” It is so true. Why is it that we need to learn how to respond “correctly” to people, rather than honestly? I think for the most part we live in a messed-up, mixed-up, backward world where up is down, down is up, right is wrong, and wrong is right. Honesty is bad, and socially acceptable lies are good. It’s weird.

          I am going to check out your blog now because it is hard in a relationship and others will benefit from your work and most importantly know they are not the only ones going through similar things. My husband and I will celebrate our 20th wedding anniversary this year, and I can tell you that it has not been easy, and still is not easy! It is hard, and frustrating–but perseverance is key, and that is a choice we can make. (Code: we can control LOL)

          • You say many truths, Jeannie. We are all doing small ‘works’ to help right the world. But what about a blockbuster movie that shows the (aspie honest and kind) truth of things? A crafted, aspie-informed village or school or carefully crafted workplace/company where the right way to be human is modelled and lived? Hmm. Ken and I have been thinking about these things (why think smalls?!). Yes, we can all make choices in every moment, and we do. But I believe the hurting world now especially badly needs ‘aspie ways’ to solve its mammoth social and environmental problems. But can it happen soon enough, I wonder?

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