10 Things Kids with-Autism Wished You Knew

Discussion in 'General Parenting' started by Janna, Jan 15, 2009.

  1. Janna

    Janna New Member

    1. I am a child with autism. I am not "autistic." My autism is one aspect
    of my total character. It does not define me as a person. Are you a person
    with thoughts, feelings and many talents, or are you just fat (overweight),
    myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

    2. My sensory perceptions are disordered. This means the ordinary sights,
    sounds, smells, tastes and touches of everyday life that you may not even
    notice can be downright painful for me. The very environment in which I
    have to live often seems hostile. I may appear withdrawn or belligerent to
    you, but I am really just trying to defend myself. A "simple" trip to the
    grocery store may be hell for me. My hearing may be hyperacute. Dozens of
    people are talking at once. The loudspeaker booms today's special. Muzak
    whines from the sound system. Cash registers beep and cough. A coffee
    grinder is chugging. The meat cutter screeches, babies wail, carts creak,
    the fluorescent lighting hums. My brain can't filter all the input, and I'm
    in overload! My sense of smell may be highly sensitive. The fish at the
    meat counter isn't quite fresh, the guy standing next to us hasn't showered
    today, the deli is handing out sausage samples, the baby in line ahead of
    us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia.
    ... I can't sort it all out, I'm too nauseous.
    Because I am visually oriented, this may be my first sense to become
    overstimulated. The fluorescent light is too bright. It makes the room
    pulsate and hurts my eyes. Sometimes the pulsating light bounces off
    everything and distorts what I am seeing. The space seems to be constantly
    changing. There's glare from windows, moving fans on the ceiling, so many
    bodies in constant motion, too many items for me to be able to focus - and
    I may compensate with tunnel vision. All this affects my vestibular sense,
    and now I can't even tell where my body is in space. I may stumble, bump
    into things, or simply lay down to try and regroup.

    3. Please remember to distinguish between won't (I choose not to) and can't
    (I'm not able to). Receptive and expressive language are both difficult for
    me. It isn't that I don't listen to instructions. It's that I can't
    understand you. When you call to me from across the room, this is what I
    hear: "*&^@, Billy. ..$&^amp;*" Instead, come speak directly to me in
    plain words: "Please put your book in your desk, Billy. It's time to go to
    lunch." This tells me what you want me to do and what is going to happen
    next. Now it's much easier for me to comply.

    4. I am a concrete thinker. I interpret language literally. It's very
    confusing for me when you say, "Hold your horses, cowboy!" when what you
    really mean is "Please stop running." Don't tell me something is a "piece
    of cake" when there is no dessert in sight and what you really mean is,
    "This will be easy for you to do." When you say, "It's pouring cats and
    dogs, " I see pets coming out of a pitcher. Please just tell me, "It's
    raining very hard." Idioms, puns, nuances, double entendres and sarcasm are
    lost on me.

    5. Be patient with my limited vocabulary. It's hard for me to tell you what
    I need when I don't know the words to describe my feelings. I may be
    hungry, frustrated, frightened or confused, but right now those words are
    beyond my ability to express. Be alert for body language, withdrawal,
    agitation, or other signs that something is wrong.
    There's a flip side to this: I may sound like a little professor or a movie
    star, rattling off words or whole scripts well beyond my developmental age.
    These are messages I have memorized from the world around me to compensate
    for my language deficits, because I know I am expected to respond when
    spoken to. They may come from books, television or the speech of other
    people. It's called echolalia. I don't necessarily understand the context
    or the terminology I'm using, I just know it gets me off the hook for
    coming up with a reply.

    6. Because language is so difficult for me, I am very visually oriented.
    Show me how to do something rather than just telling me. And please be
    prepared to show me many times. Lots of patient repetition helps me learn.
    A visual schedule is extremely helpful as I move through my day. Like your
    day planner, it relieves me of the stress of having to remember what comes
    next, makes for smooth transitions between activities, and helps me manage
    my time and meet your expectations. Here's a great web site for learning
    more about visual schedules
    http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp

    7. Focus and build on what I can do rather than what I can't do. Like any
    other human, I can't learn in an environment where I'm constantly made to
    feel that I'm not good enough or that I need fixing. Trying anything new
    when I am almost sure to be met with criticism, however constructive,
    becomes something to be avoided. Look for my strengths and you'll find
    them. There's more than one right way to do most things.

    8. Help me with social interactions. It may look like I don't want to play
    with the other kids on the playground, but sometimes it's just that I
    simply don't know how to start a conversation or enter a play situation. If
    you can encourage other children to invite me to join them at kickball or
    shooting baskets, I may be delighted to be included.

    9. Try to identify what triggers my meltdowns. This is termed "the
    antecedent." Meltdowns, blowups, tantrums or whatever you want to call them
    are even more horrid for me than they are for you. They occur because one
    or more of my senses has gone into overload. If you can figure out why my
    meltdowns occur, they can be prevented.

    10. If you are a family member, please love me unconditionally. Banish
    thoughts such as, "If he would just ..." and "Why can't she ... ?" You
    didn't fulfill every last expectation your parents had for you, and you
    wouldn't like being constantly reminded of it. I didn't choose to have
    autism. Remember that it's happening to me, not you. Without your support,
    my chances of successful, self-reliant adulthood are slim. With your
    support and guidance, the possibilities are broader than you might think. I
    promise you I'm worth it.
    It all comes down to three words: Patience. Patience. Patience.
    Work to view my autism as a different ability rather than a disability.
    Look past what you may see as limitations and see the gifts autism has
    given me. I may not be good at eye contact or conversation, but have you
    noticed I don't lie, cheat at games, tattle on my classmates, or pass
    judgment on other people?
    You are my foundation. Think through some of those societal rules, and if
    they don't make sense for me, let them go. Be my advocate, be my friend,
    and we'll see just how far I can go.
    I probably won't be the next Michael Jordan, but with my attention to fine
    detail and capacity for extraordinary focus, I might be the next Einstein.
    Or Mozart. Or Van Gogh.

    They had autism too.
     
  2. gcvmom

    gcvmom Here we go again!

    This is good to remember for many of our difficult child's -- with autism or not! Thanks for posting it :D
     
  3. SearchingForRainbows

    SearchingForRainbows Active Member

    Janna,

    Thanks for posting this. WFEN
     
  4. 'Chelle

    'Chelle Active Member

    10 things I DO wish I knew when difficult child were younger. #6 especially was a huge help when we started him back to mainstream, and I think a big factor in high school with everything scheduled there, he always knows what's next.
     
  5. Mandy

    Mandy Parent In Training

    That brought tears to my eyes just thinking of my difficult child's perspective on things. I think every parent should read this even if their child isn't autistic!! I hope next time I am getting frustrated I remember this!
     
  6. Very good; one thing I learned about difficult child and other kids like him came to me this summer. I would never have seen this unless my Dad had not come to stay with me at the end of his life.

    My Dad had brain cancer; and as the tumor/his condition became worse, he always acted and sounded fine until the very end. He would speak in his normal tone of voice and carry on the everyday conversations that we all have; but if got confused and rather than repeat what he said before (then it's obvious to others there might be a problem); Dad would just change the subject and talk about something else - and start rubbing his head.

    What I discovered in watching difficult child at the same time was how he did the same thing my Dad did, including rubbing his head. If difficult child either does not give you a complete response, ignores you or changes the subject, something else is going on too (even though everything is calm and the same as always, not upset or unhappy) But if you ask a follow-up question, he tends to snap at you (e.g., "I just said"). And then, he won't know why you are upset at him for yelling. I am wondering again about autism . . .
     
  7. TerryJ2

    TerryJ2 Well-Known Member

    Thank you! So much to think about, and so eloquently stated.
     
  8. cadydid

    cadydid New Member

    WOW is all I can say.. Thank you for sharing this... If you do no not mind, I'd like to forward it to a few people....

    This has made me stop and think.. I know what I go through with son and what it does to the family, btu it made me stop and think what does he go through? I think I might just ask him tomorrow and see what he says...
     
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