Fractured reality: This is autism

I get so frustrated.

Adults with autism, and even some parents, tout autism as “not a disability” and that we are just “quirky geniuses.”  I’m not saying that autism doesn’t have its perks, but running around saying that it’s “just a difference!” leads people to believe that I should be able to do things that, at least right now, I can’t do, and that frustrates me.

I think many of these people who have jobs, and hubands or wives, even kids, don’t know what autism is like for those of us who live more like me.  I include in my list all of autism’s friends (anxiety, OCD, GI issues, possible seizures or whatever my “episodes” really are), as without autism, I likely wouldn’t have these issues.  For the record, I could also write a list of all of autism’s positives and paint an entirely differen picture of it.  I realize that.  But that’s not the mood I’m in, nor the point I’m trying to make.

So, autism is not having a car but being unable to cross the street by yourself, leaving you stuck in your apartment when staff isn’t here.

Autism is relying on other people (your mom or your staff) to help you communicate.

Autism is an innocent mother-daugther tradition (ice cream after unfun medical procedures) getting cut short because the ice cream makes you sick within minutes.

Autism is your mom having to deal with all of your professionals and clinicians.  This means having to share every. single. detail. of your life with your mom, even though you’re an adult.  I love my mom to death, but sometimes I wish I could have privacy.

Autism is having a sensory system so confused that you live in a fractured reality.  You go from present to not present throughout the day, and your memory falters frequently.

Autism is not knowing what day of the week it is or what time of the day without checking over and over again.

Autism is calling your mom because you want to hear her voice but being unable to actually speak to her.

Autism is underlying anxiety that’s so pervasive that you don’t actually know if you’re anxious anymore, since it never goes away.

Autism is wanting to work, but every time you try you end up hiding, cowering, crying, panicking somewhere, and your every waking moment becomes dominated by fear of going back to work.

Autism is every time you turn around, you realize you’re picking or scratching or biting at yourself.

Autism is being unable to sit through a church service due to sensory issues.

Autism is “feeling funny,” but being unable to tell if you’re hungry, sick, have low blood sugar, or have to go to the bathroom, or have a hair in your face.
Please, rather than going around saying that people with autism aren’t disabled and are just wired differently, try saying that autism is a spectrum that affects each person differently!

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7 thoughts on “Fractured reality: This is autism

  1. You wrote: ‘Adults with autism, and even some parents, tout autism as “not a disability” and that we are just “quirky geniuses.” I’m not saying that autism doesn’t have its perks, but running around saying that it’s “just a difference!” leads people to believe that I should be able to do things that, at least right now, I can’t do, and that frustrates me.”

    I have been told, “We’ll, we’re all like ‘that’ (fill-in-blank) to some degree.”

    No, no we’re all not.

    Once again, you’ve articulated well what has been stuffed and locked in a dungeon inside of way too many people for way too long.

  2. I am not ashamed to say my girls are disabled, why should I be? They have severe autism and then some but it’s the autism that limits our lives.

  3. I never agree when people say that Autism is not a disability, it’s bad for Autistic people and bad for people with disabilities. There are people with autistic traits that are not disabled, but most of us are, there is a reason for the word Spectrum.
    I have several of the problems you wrote, I am disabled because of Autism (and other things I truly hate with no good side), but I still like being Autistic because the things I love come from Autism too.
    It’s a difference and mainly it’s a disability. Being disabled for me is not a reason to be ashamed.
    Again I like another of your posts, I am saving money for your book.

  4. Remind me to have both my folks read this! once again you put into words something I felt but couldn’t articulate.

  5. I was diagnosed with Asperger Syndrome at the age of 50. I have been married for 32 years, yet I dislike being married. I would like to live by myself, and don’t enjoy having to share my ‘space’. I also have five children and 14 grandchildren (one died, and one on the way).
    Raising the kids was the hardest thing to do. Living with my husband (who mostly refuses to understand my issues) is even harder. Because now the kids have left, but he is still there, and my autism is getting more pronounced with age, as is my desire for aloneness.

    I am one of the people who’ve been saying that having AS is just being different. Because my husband claims it is a mental illness, and has been saying things like, “One of these days you’ll end up in an insane asylum”. I try to be as ‘normal’ (whatever normal is) as possible, using up a lot of energy in the process, to not be lectured by my husband on why AS is no excuse for being the way I am.

    But in reality I know that there are ways it is a disability, too. I have dyscalculia, which makes anything related to numbers difficult. I have executive dysfunction, which makes multi-tasking impossible, and renders me incapable of being neat. I don’t like being touched, and might react to being touched unexpectedly by hitting somebody in a reflex reaction. My husband touched me on the back while I was concentrating hard on the conversation I had with somebody after church a couple of weeks ago. I didn’t see him coming, and had to listen to how abusive I am, and that I ‘punched’ him, for hours after (I did NOT hit him hard).

    I also have Celiac Disease (which is VERY common with autistic people) and have a ton of other intolerances besides gluten.

    Have you ever been tested for Celiac disease? Undiagnosed Celiac disease in childhood fairly frequently causes type 1 diabetes. They say that people with diabetes should be tested for Celiac, but it is the celiac that came first. Which is sad. I am glad I didn’t develop diabetes, because I had celiac symptoms from at least the age of three, and figured it out myself when I was 52, doctors are very ignorant about it.

    • I guess my point is that for many of us, even if we wanted to, we could never get married nor have children. When people say autism isn’t a disability, I just think they need to speak for themselves and not for everyone.

      I tested negative for Celiac when I was 16 but am being retested now. I am definitely highly intolerant to gluten; we know that much.

  6. Just found your blog and I am so thankful! I have a four year old with autism. He does not speak, and I am always seeking insight into ways I can better understand him.

    I am thankful to hear you say this. He is not just “wired differently.” My son cannot speak, gets frustrated and angry, has trouble sleeping, and would run off if I don’t constantly have a hand on him. So, even though I suppose my son does see the world differently than I do, I also know that it makes things hard for him. He cannot get around in the world the same way that others his age do. So yes, I consider that a disability.

    That said, he is the most wonderful, adorable, joyous little boy. He is disabled and he is my perfect little boy.

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