10 Things Every Child With Autism Wishes You Knew

topic posted Sat, March 11, 2006 - 2:30 PM by  RK
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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 I may appear withdrawn or belligerent to you, but I am really just trying to defend myself.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: "*&^%$#@, Billy. #$%^*&^%$&*" 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 www.cesa7.k12.wi.us/newweb/c...utism.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.
posted by:
RK
offline RK
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  • Unsu...
     
    this really breaks things down. thanks. my 2.5 yr old was just dx'd with autism a couple of weeks ago. i suspected something was going on being that he is the third child of 4 and his development seems a little different. i got him early intervention @ 18mts. he goes to a school that combines typical developing children (peers) with children in the spectrum . since going to school, he has become more social. I noticed the change when i took him to a b-day party and he was actually chasing kids and also played with children in the dr's office instead of carrying toys away from them. I am going to print this out and pass it out to the parents of children in his classroom.. good lookin' out!

    nicole
  • I wouldn't say EVERY child.

    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)?

    I'm not "gay". My homosexuality is one aspect of my total character. It does not define me as a person. Are you a person with sexual thoughts, feelings and desires, or are you just steamy-minded (perverted), small (where it counts), or slow (in bed)~? I see what you mean, though.

    >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. <

    Isn't that the truth. . .

    >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.<

    Actually, despite my autism, I always did have some grasp of puns, sarcasm, and double entendres. However, despite my limited grasp of those fields, I never did understand idioms or nuances, although I have spoken to individuals with autism who do.

    >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.<

    Of course, there are also people who, despite their young age, do understand such words; but get bullshit diagnoses of echolalia anyway. I know, because I was one of them.

    >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.<

    Another blanket statement. I always did prefer clear explanations to pointless demonstrations.

    >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.<

    Good word of advice, and I feel that that expands far past the autism spectrum.

    >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.<

    How very true.

    >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.<

    Actually, that same attention to detail can actually be beneficial in such physical activities as Parkour and Aikido. If an autistic child should show interests in such activities, great. If not, c'est la vie. In conclusion, I'd like to state that your post offered some rather useful insight; but one can not say that any of this is universal among all autistic children.
  • First off, I am not a child. I'm 45. I figured out that I was autistic only about a year ago. However, I was a child once.

    "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."

    This isn't true for me. I _am_ autistic. I always have been. It _is_ part of my identity exactly as much as being white, male, blond, or blue-eyed is part of my identity. I can't leave them behind. These aren't things I have, but are rather things that I am. None of them is a total definition of me, but they are each parts of me. I am autistic. I am caucasion. I am male. I don't "have" caucasion and I can't be cured of it. I am it. If any of these things were taken away, I would no longer be me.

    That this item was #1 on this list makes the entire list invalid in my opinion, despite the fact that some of the rest of the list has value. Whoever wrote this list was clearly clever, but just as clearly doesn't yet grasp the autistic experience.

    "4. I am a concrete thinker. I interpret language literally. [...]

    5. Be patient with my limited vocabulary."

    At 45, I'm an engineer and a trained hypnotist. I am exceedingly precise with my language. Far more precise than most people. I still tend towards literalism, though my vocabulary far exceeds most people. And, in part because I have invested so much time developing my language skills, I can often be impatient with people who use their language in an imprecise manner. I will misunderstand them, usually by accident, but occasionally even on purpose as a means of demonstrating a point.

    "6. Because language is so difficult for me, I am very visually oriented."

    I am not particularly visually oriented. I'm mostly kinaesthetic. I need to do something to learn it. But I may need someone to demonstrate it before I can attempt it.

    "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."

    Meltdowns occur for many reasons other than sensory overload. Mine tend to look like bouts of insecurity and if I can't control my environment, then I may well attempt to control the people in it and/or around me.

    "Overload" is simply a way of saying that I don't know how to process what I'm experiencing. For me, as an adult, it is pretty much never a sensory overload, but rather an overload of attempting to understand and read social situations that leads me to trouble situations.
    • I seem to recall having had this conversation several years ago, ("autistic" vs. "having autism") and here we are, revisiting it:

      autismadhd.tribe.net/thread/...fbd8e59c

      An interesting thing that my son's developmental pediatrician pointed out to us once: After practicing for over 20 years and with two of her own children on the spectrum, she told us she believes autism to be a social disorder primarily and a communication disorder secondarily, that the stunted social growth in very early childhood is actually the cause of the limited communication. Because although we think ourselves so highly evolved, we are still human animals after all, and a huge part of our communication (I'd say easily over 50%, but that's a completely unscientific guess) is non-verbal. It's in facial expression and gesture and tone of voice. In short, it's wrapped up so tightly in our social bonds, that for a person for whom social bonds are hard to establish, for whom social connection and even eye contact is challenging if not completely unfathomable (depending, I suppose, on the severity of one's disability), more than half of language is a complete mystery. It is in the early developmental years that children observe the social interactions of those around them and learn social cues and begin to adapt to that nonverbal language almost immediately, and for children who cannot learn that nonverbal language that the rest of us take for granted, any other type of language will be that much more challenging.

      A long way round to get to my point that much of the original list as posted was a language-specific list. But not every autistic individual's language issues are the same, or at the same level person next to him or her. Likewise for sensory and even the mother of them all, social issues. This is a multi-faceted condition that can be very challenging for many people to live with, which it can even be beneficial to others.

      It's just another way to live. Sometimes it's harder. More often than not it's harder, but definitely it's different.
      • There is, of course, another theory that rather than being blind to nonverbals, we actually see MORE nonverbals than most people. What we lack is the understanding of which nonverbals are socially expected to be ignored and which are socially expected to be acknowledged.

        Those of us who have studied nonverbals specifically often tend to become experts in them. NLP is riddled with such people. Personally, I still can't do it with groups of people, but when I focus on one cooperative person, I can do exceedingly well.

        I think it's more accurate to state that we simply don't learn to recognize or process nonverbals in the same way that NT folks do. We're capable. We just need to have it taught to us in a different way.

        For these reasons, i'd say that the communicative/social disorder theory doesn't really work for me. That's just a question of taxonomy - how we categorize the syndromes. It doesn't really speak to cognitive causes or antecedents. Or, if it does, then it's inaccurate for me.

        And I'm sure that the autistic vs having autism discussion will be an ongoing one for years to come.
        • I guess it's fair to say that you're in the minority, though. It's possible that you're an Aspie. Diagnosis-wise, Aspies are defined as having language (you can't be a non-verbal aspie) and tend to be higher-functioning, and more often fall into the "savant" category than your run-of-the-mill autistic individual.

          If you didn't know that you were autistic until you were 44 years old, what was your indicator? Because communication disorder, next to "social awkwardness", is generally number one in the You May Be Autistic handbook. Honestly, what your describing of yourself doesn't sound very autistic at all. You're saying, "I'm autistic, but this list doesn't apply to me", and while I agree that this list is full of blanket statements that (while well-intended) are not universally true for all autistic children, but the things that you're describing about yourself are not typical of most of the autistic community. So my impression is that you are either high enough on the spectrum or far enough askew from it that this list doesn't apply to you, but that doesn't lessen its value to anyone else. Keep in mind that you are an adult who has lived 45 years like this. A list like this is really intended for parents of a newly diagnosed child.

          All that being said, I still agree with you in your disagreement of the first point that you cannot divorce a person from their autism. It is a pervasive condition and is therefore interwoven with their very identity. I therefore feel that I am on the "I am autistic" side of the debate (as opposed to "I have autism").
          • "A list like this is really intended for parents of a newly diagnosed child. "

            Yes, I can see that from the hostility in your post and in the current description.

            There are some very clear political differences between people with autism and parents of recently diagnosed children. There's a lovely overview of the differences in wikipedia.

            We are at a strange time for autism historically. Autistic diagnosis hit the DSM in 1994. Children who were young at that time or born later are quite likely to have been caught and diagnosed at an early age. But people who were older or already adults at this time are not. If I were born in 1994, or if similar diagnostic scanning were available when I was a child, I would likely have been diagnosed then. However, it was not and I was not.

            This divides the community into two clear segments. Most of the children diagnosed since 1994 are not yet adults and those who are are only barely adults. This means that their parents are still, largely representing them in the world while the rest of us, those who are autistic and are older, are representing ourselves. As time goes on, those of us who predate the 1994 DSM introduction will die off and those who were diagnosed as children will come of age and start to represent themselves politically. But right now, we have this awkward divide.

            I am autistic. I am aspergers. Aspergers is a form of autism. Most people who are autistic today are aspergers. I calculate that as we begin to recognize high functioning autistics as autistic, we'll soon see that about 7% of the American population is autistic. Much more than that 1 in 166 or 1 in 80 numbers currently being handed out by the CDC which indicate diagnostic rates for disabled children.

            What we have now is also a rare opportunity for research in that many adults my age or older are autistic and yet have found coping mechanisms even without specialized training as children. Not all of us have survived, of course. Looking back to my own high school experience, I remember a classmate named Brian who, in my current frame of reference was almost certainly autistic but undiagnosed. He died in an armed robbery while working at a gas station in his early 20's. If ever there was a bad time to misinterpret nonverbal cues, it would seem to me that during an armed robbery would be one of them.

            Current diagnostic tools are also broken. Whether I was or was not suitably timely in my language development is now lost. No one can answer that. And a diagnostic which hinges on that information is hopelessly broken. As are most of the tests. I can and do look people in the eyes. It's taken me over 30 years to develop that skill on my own, in the face of numerous people telling me that my problem was shame, or rudeness or a desire to be different or any number of other irrelevant lay diagnoses. But I've done it. If your sole definition of autism is that someone can't look someone else in the eyes, then by that definition I am no longer autistic.

            I have survived to the age of 45 and, largely, succeeded in our culture. I am well educated, well employed, and well regarded in my industry. I have learned coping skills and I'm willing to share them with other autistic people.

            But you're right. I don't need to stay here and defend my claim of being autistic. I simply am autistic and it doesn't really matter whether you believe that or not. I'll leave now, so that my presence doesn't distress you any further, but I will still exist in the world and I will still be autistic. You simply won't have access to my experience or knowledge in this forum.

            For those who might be interested, I'm generally on several other nearby autistic forums and I'm available by pm. Feel free to look me up.
            • There is no need to leave a tribe simply because someone disagrees with you. Certainly you can carry on a conversation with someone when you don't always agree on every point? I always rather thought that was one of the more important parts of information sharing. Discuss your disagreements and see if you can sort them out rather than simply walk away from them, yes?

              I am certainly interested in further input from you on this, but it seems that while you identify yourself as autistic, you are on the higher-functioning end of the spectrum. At 45 years old, that puts your birth around 1962, yes? A time when children who were significantly disabled were frequently surrendered to the state by their parents and institutionalized. Children who simply avoided eye-contact or who took their time in developing language skills were usually spared this fate and simply regarded as "slow". In many ways, born at the time you were, you're fortunate that you were not identified at a younger age.

              However, I think that the groupings that were given in the '50s and '60s still hold somewhat true. It's not called the Autistic Spectrum for nothing. There is a group that is more profoundly disabled and another group that is clearly higher functioning. And while these are obvious groupings, there are just as clearly people who don't fit easily into either group. My son, for instance, doesn't rock, or hand-flap, or toe-walk, or hit his head against objects. His proper diagnosis is "High-Functioning Autism". But he has shown zero language at all, at almost six years old. He is echolalic, but will not answer even yes or no questions. He never picked up sign language, PECS, or even the communication device we got for him. Zero language. In that sense, he is quite profoundly disabled. I have to consider the possibility that he may never be able to communicate with the people around him, hold a job, or live independently.

              So while you are looking at the two clear segments of the autistic community, let's not forget that this is colored by your perspective as a high-functioning autistic who was capable of representing his own interests when he came of age to do so. While you are correct that children diagnosed since 1994 are still largely being represented by their parents, any individual born before then who falls into that "profoundly disabled" group will likely continue to be represented by their parents, siblings, or even the state for the better part, if not the rest, of their lives.

              I am concerned that these individuals are going to get ignored politically. Not being able to speak for themselves, but deemed somehow lesser by the autistic rights groups because they are represented by their parents, they now seem to fall into a limbo state, not accepted into the autistic community because of their inability to represent their own interests, not accepted in society as a whole because of, well, autism.

              Really, I didn't intend to put you on the defensive. It just seemed that you were arguing with a list that was clearly not aimed at you (it does say right in the title, "10 Things Every CHILD With Autism Wishes You Knew"), simply because they didn't all apply to you. I didn't think it was the greatest list in the world; I didn't rush to print it for all my kid's teachers; but it did seem to have some value. I saw that it might be helpful to those parents who were in my own shoes over four years ago, with a newly diagnosed kid, thinking, "Well, shit. What now?"

              So, in closing, I sincerely hope that you haven't picked up your toys and gone home.
  • Re: 10 Things Every Child With Autism Wishes You Knew

    Fri, September 14, 2007 - 10:54 PM
    Actually, life is about the same, despite the subtle nuances, which make us almost completely different, seemingly.

    I am quite capable of abstract thought, though, so, yeah.

    I can be incredibly coordinated... my reflexes are odd, but active. Such as things like the knee reflex, I don't react much, or at all, but I can easily dodge an oncoming object... which is all part of coordination.

    Though in Phys.Ed I may appear a "klutz", because I am most often hit by stray balls and such... The however, is a product of the uncoordinated actions of others, and I am rarely hit when I see it coming

    My head is a magnet, you see, for falling objects, and I have every bit of the ability to avoid the unseen as an average man. I guess It must be comical to see the kid, who doesn't do more than pause in speech when he gets pegged in the back of the head by a stray soccer ball.(Though, I may also submit to Newton's third law, depending on the force of the blow. You know, fall forward. ) In the same situation, I could however react normally... it's all mixed up, in my case.

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