10 Things Every Child With Autism Wished You Knew

Discussion in 'General Parenting' started by Janna, Aug 19, 2007.

  1. Janna

    Janna New Member

    Here are 10 things every child with autism wishes you knew.

    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 I may appear withdrawn or belligerent to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

    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. Coookie

    Coookie Active Member

    Hi Janna,

    This was very informative. See some of my difficult child there too. :frown:

  3. tiredmommy

    tiredmommy Site Moderator

    Thanks, Janna. I think it's helpful to remember that our kids' issues aren't punishments being put upon us.
  4. Marguerite

    Marguerite Active Member

    We found ourselves explaining to people yesterday that difficult child 3 has autism. We were leaving the restaurant - the tallest structure in Sydney - which meant a long elevator ride all the way down. The building looks like a KFC bucket on top of a very long tube. The elevator shaft is the tube. There are four levels in the 'bucket' and two levels on each elevator, which means that it sometimes loads like a gondola on a ferris wheel - load one level, then drop down and load the next, THEN drop all the way to the bottom, in the city mall.

    difficult child 3 was already anxious because of the two-level elevator. He wasn't happy about it stopping and not opening the doors, even though he knew intellectually it was so t he people in the next level could get on/off. They have a closed circuit TV showing what's happening in the other level and you can wave to them and they can wave back.
    We were a large group and the elevators are small. He somehow got shoved on with half the party, leaving the rest of us (including me and husband) to wait for the next ride down. But something went wrong (difficult child 3's worst fear) and their elevator came back. Down at the bottom someone had unloaded one level but not the other - they had been sent back up to the bucket. difficult child 3 was loudly angry (early anxiety). It was sounding very rude to other people around us who don't know us, so husband quietly said to a woman standing nearby, "He is autistic, his anxiety is getting aggravated by the elevators not working properly."
    The woman smiled and said, "My husband was just saying quietly to me, that he thought he recognised autism. He works in Special Education." The accent was clear - they are from the US and had only been in Sydney for a few days.

    I do worry about whether to say something or not. We tend to err on the side of telling people, preferably discreetly. difficult child 3 will happily tell people himself about his autism. But he was in no mood to talk about anything yesterday, other than getting down soon and safely. I tried to make light of it by saying, "It's not so bad. If they can't help us get down, at least we won't starve up here. They've just fed us a lovely lunch; they'll have to feed us dinner too."
    He just glared at me (classic basilisk stare). Amazingly, I did not turn to stone. Maybe it's all the practice...

    Thanks for this, Janna. I have seen it before but this time I'm keeping a copy.

  5. Sheila

    Sheila Moderator

    Good info. Thanks for sharing!
  6. Hound dog

    Hound dog Nana's are Beautiful

    This should be printed out and placed in IEP folders, as well as handed to teachers at the beginning of the school year.

    Really good. :biggrin: I see alot of Travis there.

  7. trinityroyal

    trinityroyal Well-Known Member

    Thanks so much for posting that list, Janna.
    I would like to add one thing.

    11. Sometimes when I'm asked a simple question and I reply "I don't know" it's because at the time, I truly don't know. I may have known it yesterday or even 5 minutes ago, but right now whatever sensory overload I'm experiencing is short-circuiting my head, and I truly don't know.

    All the best,