Saturday, 25 June 2011
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10 Things Every Child With Autism Wishes You Knew
Here are 10 things every child with autism wishes you knew.
By Ellen Notbohm
- 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)?
- 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 I may appear withdrawn or belligerent to you, but I am really just trying to defend myself.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, and 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 over stimulated. 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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- From: MyTwoCentss@xanga
- Name: Kim
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- About Me: I created this site so that I could voice my opinions, ideas & beliefs. To give my two cents as the phrase goes. I'm a conservative Christian as well as a SAHM to two young & wonderful children.
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Comments (21)
Thank you very much for this short explanation of things. As someone who doesn't have autism I didn't know most of these things, so it's really really helpful to have someone explain them to me so that I understand a little better what someone with autism is experiencing. For example, I didn't think about the way a large grocery store would be overwhelming if the child had hypersensitivity to sight or sound.
@Ooglick@xanga - A friend of mine on FB had re-posted this on her status and she's the mother of a 5 year old with high functioning autism. I thought it was very informative & would open a lot of eyes (including my own) and thought it would be perfect here.
Thank you for reading.
Overall, this is a good list and very helpful for people. It should be noted that some forms of autism are different and so some may have a great deal more linguistic capabilities. Some may even learn to utilize things like sarcasm. Noting that the use of one's own literal interpretation results in laughter on frequent occasions can cause a person with autism who makes the connection that the laughter is directly related to what was said to begin to use that literal 'natural connection' as the basis for developing a sense of humor. Through practice, these individuals can come across as outgoing and witty on the surface, having learned to use that part of their ability. Usually, these individuals are far better at 'hiding' their autism than others and may even be very guarded about the fact that they even have it. Many may even have grown up with no clue that is what they had simply because they hid certain facets of it so well. I, of course, am not trying to debunk anything said here. It is a solid list and great for general reference. My comment is merely an aside to be seen as a tiny footnote at the bottom of the page... which it kind of is anyway.
Once I finish college, I'm considering going into a field where I can help children with autism. Those steps helped me really get into the mind of someone with autism. Understanding how they feel is the most important thing for me to learn if I really want to help them.
i do not know anyone with autism and have never been around a child with autism, but this is very informative. thank you.
@xhavexhopex@xanga - If you're interested, there's a video on a blog I wrote not long ago of a girl with autism who shares her inside look at what it is like living with autism. It definitely gives more perspective.
@MyTwoCentss@xanga - Awesome! I will definitely take a look.
Thank you for this!! This society had shaped me to look at autism as something negative and I don't want to keep seeing it that way but at the same time, I don't know how to interact with people with autism (it's hard for me to talk to people without it, too).
That first one I'm not so sure about. Does the semantics really make that big of a difference? Saying a person is klutzy is not saying that he/she is totally defined by the klutziness, it's just saying he/she is klutzy.
@f5ye_angel5@xanga - Same way you interact with anyone. By listening, by noticing their emotions, their likes, their dislikes, their personality, and everything that makes them them, and by adjusting your own speech and attitude to ensure they feel loved and respected.
This just makes autism sound like terminal brain damage.
Very, very informative! Thank you.
The first one is a little silly. Just because you call someone autistic doesn't mean you're saying that's all they are. I don't want to have to go through a list of a person's qualities every time I want to refer to one piece of them.
That said, this makes sense. It really all comes down to being understanding. As with anyone, if they tell you their experiences, you should take that into account when interacting with them. It's like if a person isn't comfortable being touched, you do your best to avoid touching them. That said, autistic people and their caretakers should understand that most people are ignorant of the experiences of autistic children, and they should do their best to explain what's going on to those that interact with them (obviously if the autistic person has severely limited verbal faculties, they will be unable to do this adequately and responsibility should fall on the caretaker). And people who will be interacting with autistic children on a regular basis should do the research they need to do to understand how autism feels and what it does. But because the symptoms range so much from person to person, you have to be understanding if a person doesn't understand your individual experience (or the experience of your autistic dependent). Understanding is a two way street.
@Kyuketsuki_no_Megami@xanga - No, it's showing you how differently their brains are wired.
@Kyuketsuki_no_Megami@xanga - Gah, that was crude, thanx. I feel the opposite. Since I have lived with higher functioning autism for 49 years (and most of this article fit me perfectly as a child and some still fits me as an adult), I tend to look at people the other way around, and I probably sound just as offensive. I've made comments in the past about blonds on cell phones that caught hell, but I seriously cannot imagine yapping every empty thought in my head to anyone who'll listen on the other side of a connection. I feel that the people who invented the phone have much higher brain function than the people who use the phone. I know this is very simplistic and not at all a general truism and that people are much more than the cartoony compartmentalized reductions we picture them as, but the terminal brain damage comment reminded me of how I feel about other people not being able to process string theory, 4 space, time fragmentation, hypergeometrics, etc. Terminal brain damage? Wouldn't trade my head for anyone else's in the world. I grew up thinking there was something wrong with everyone else.
Friends lock. Figures.
@bluejacky@xanga - Actually, friends lock has been up for over a year now. I don't update anymore, and have little interest in having my past on display to people who only xanga stalk my page when they disagree with an opinion or perspective.
Also, kindly don't misinterpret my words- I never said people with autism had brain damage. I said this article made it sound like they did.
This is really interesting. Great post. I never knew this much about autism.
It gives me more insight to my brother. Thank you.
Excellent list. Thanks for posting this.
I love this!! I plan to work with autistic children in the future and have worked with and been interested in children with special needs for about 11 years. I hate when people think of those children as ONLY autistic, or impaired. It's not all they are, it's only one small aspect.
I feel like this list was very necessary. Thank you.