ASD – Always, Never, and Physical Illness

I feel sick.  Physically sick.  I was about to have breakfast but now I feel too sick.  And my hands are shaking, making it hard to type.  But – I have to get this out.  I need you to know this.

I just read yet another person say that “their ASD child will NEVER…”.

Ugh.

My first reaction is “how the hell do you know?  Seriously?  Are you a mind reader or clairvoyant?”

None of us know what the future holds for our kids.  And the younger our kids are, the more this is true.  In this particular case, it was a statement that her ASD kids will never be into fashion because ASD kids are not into that sort of thing.  They don’t care about it.  The exact quote:

Individuals with autism do not recognize the social desire to fit in and follow the crowd. They are their own crowd and they like it that way.

Apparently there are certain words her two boys will NEVER utter (in regards to fashion).

Of course they won’t.  They are boys.  She keeps comparing them to herself and her sisters.  All girls.  You can’t compare ASD brothers to NT sisters.  Boys and girls are different anyway.

I can tell you right now that while boys of either neurological persuasion may not be interested in fashion (and some are, to be sure), some girls are.  I can remember being twelve and wanting to fit in, so my mother bought me a copy of Vogue.  Which was thoughtful, except she passed it over and left me to it.  I looked through it and thought it was in a whole other language.  I wanted to learn, but I needed help, and none was forthcoming.  And so it was years before I had any fashion sense whatsoever – long after I finished high school – and it always hurt.  It hurt that I never fit in and that people looked at me strangely.  It hurt to know that I wasn’t like the other girls, for whom it seemed to come perhaps not easy, but at least easier.  I wanted to be fashionable, but I couldn’t do it without help.

And I didn’t know how to ask for help either.

This is the cause of my physical illness.  Not the comment per se as from the rest of what was written, it seems like she does have a good idea of what her kids are about.  It simply happened to be what made me sick this morning.  The always/never thing.  I hate it when parents of ASD kids use those words.  HATE IT!  I hated reading that so many people thought the piece was brilliant while I was sitting there, wanting to throw up.  And I hate that this is the last straw for this ASD group.  I am going to have to leave.  Too many comments from NT parents who make assumptions based on NT reality alone make me feel sick.

And that’s the other thing I want to talk about – being sick.  When someone says something I don’t agree with, I can usually let it go.  When that thing has the potential to hurt someone else though, it makes me feel physically ill.  Perhaps this is an ASD thing, or perhaps it’s a survivor of abuse thing, but regardless – it’s not that I can’t mentally let it go and allow everyone to have their own opinion – I can do that for other things.  However a lot of stuff I read from parents of ASD kids seems like abuse to me, and I can’t let that go.  I feel physically ill, just as if someone has punched me in the gut for real.  I put up with it for my friends, but I can’t put up with it for strangers.

One of the top things on my list of gut wrenching pain is the use of always and/or never.  I hate it with so much passion!  None of us can tell what the future holds for our kids, but I can still remember being about eight years old and my mother telling me I would never make it to collage if my grades didn’t pick up.  Except, I never heard the “if my grades didn’t pick up”.  I just heard that she thought I was crap.

Some of the more common things I hear around the place are (with a child’s reaction to follow):

My child will never talk.  (Well, what’s the fucking point of trying then?  If I am never going to do it, what am I busting my arse off for?  Screw that!).

My child will never have the skills to live alone.  (Awesome!  What’s the point of learning how to do housework if I can get away with NOT doing housework?)

My child will never attend TAFE/collage/university.  (Am I really that stupid?  Well, what is the point of studying at all then?)

My child will never have a relationship/family.  (Am I that repulsive?  That unlovable?  If someone likes me are they just feeling sorry for me, or what?  Like I don’t have enough social awkwardness to deal with, now I have to worry that any relationship I do have has some sort of ulterior motive?)

My child will always have toddler-type meltdowns.  (This is acceptable behaviour.  It’s ok if I present this behaviour forever.  Woo hoo!)

My child will never be a team player.  (I’ll just keep doing my individual thing then, and never learn how to be a team player.)

And please, do not be mistaken into thinking that your kids do not know how you feel.  They know.  Ask a few ASD adults.  If anything, we seem to have a better memory for the one-off comments that hurt like a bitch.

Never say never or always.  You don’t know what your kids are capable of.  I’m 35 and still don’t know what I am capable of.  We all keep learning and growing, whether we have ASD or not.  It hurts me so much to hear parents give up on their kids like this.  Or assume they know who their kids will always be based on who they have been up until today.  Always/never statements limit options.  They hurt feelings.  Just don’t use them.

And keep in mind that hearing things that are not agreed with can cause an actual physical reaction in someone with ASD – even if it seems minor to others.  Even if it seems minor to them!  That might explain a few things 🙂

As for the mother above – my husband says – “If her boys do grow up and be interested in fashion, then that is going to be their interest, so watch the fuck out!”  *giggle*

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability
3 comments on “ASD – Always, Never, and Physical Illness
  1. insightspace says:

    this is a good point of view, really. And i feel like crying…. it’s so unfair! They deserve to be…. not only accepted, helped…. but LOVED. I had an asperger classmate and i can positively said that even if others mock them and nobody can even imagine how pure, innocent and… lonely these people are. Because we can say that they live in their own world, but it is this way because nobody dared come inside it. And when you talk with such a person he will start asking questions, his mind going from one topic to another and in a minute he wants to express anything he has longed to share… just because you are the only one who has given him a bit of attention. Such a person remembers you and everything you’ve said years ago. And he maintains this picture all his life. How many of us do that?
    So, mother, i admire you for these statements and totally agree with you that never is never an option.

    • Thank you :). I had a giggle at your description of wanting to express anything you have longed to share – I’m sure many people have wanted to gag me over the years! I have done that quite a lot. I try to pick up on it and stop myself but sometimes it takes me a while to notice that my mouth has gone non-stop for the last hour lol…

      Thanks for commenting 🙂

      • insightspace says:

        🙂 expressing yourself is always a better option than trying to remain silent. As some days these feelings will explode. I like your way of thinking and i’m absolutely sure that there are other people who would love to know it too.

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Pissed off since 1995. Mad as a hatter since way before that.

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