Ten Things Every Child with Autism Wishes You Knew

[Guest guest]

Stacey

thank you ,can I foward this to other lists?I already sent to my inlaws ,they

REALLY need it.It is just what my dd would say if she could

Theresa

[ ] Ten Things Every Child with Autism Wishes You Knew

This is from another list, sorry if you get it twice. Also for those wanting

to print flyers this might be a good thing to have.

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Ten Things Every Child with Autism Wishes You Knew

Some days it seems the only predictable thing about it is the

unpredictability. The only consistent attribute, the inconsistency. There

is little argument on any level but that autism is baffling, even to those

who spend their lives around it. The child who lives with autism may look

" normal, " but his or her behavior can be perplexing and downright difficult.

Today, the citadel of autism, once thought an " incurable " disorder, is

cracking around the foundation. Every day, individuals with autism show us

they can overcome, compensate for, and otherwise manage many of the

condition's most challenging aspects. Equipping those around our children

with a simple understanding of autism's most basic elements has a tremendous

effect on the children's journey towards productive, independent adulthood.

Autism is an extremely complex disorder, but we can distill it to three

critical components: sensory processing difficulties, speech/language delays

and impairments, and whole child/social interaction issues.

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 I may appear withdrawn or belligerent to you,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: " * & ^%$#@, . #$%^* & ^%$ & * " Instead, come speak directly to

me in plain words: " Please put your book in your desk, . 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>

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 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.

Freelance writer and consultant Ellen Notbohm is a columnist for

Autism/Asperger's Digest and co-author of 1001 Great Ideas for Teaching and

Raising Children With Autism Spectrum Disorders (Future Horizons). She

favors " common sense " approaches to raising her sons with autism and AD/HD.

She

lives in Oregon.

By Ellen Notbohm

South Florida Parenting

[Guest guest]

thank you

theresa

Re: [ ] Ten Things Every Child with Autism Wishes You

Knew

Stacey

thank you ,can I foward this to other lists?I already sent to my inlaws

,they REALLY need it.It is just what my dd would say if she could Theresa

=======================================================

[Guest guest]

Dear Friend of ASO:

This article was posted on the ASA's Chapter Leader's Network. I thought it presented an interesting perspective. FYI - Please share.

Sincerely,

Barbara C. YavorcikPresidentAutism Society of Ohio701 S. Main St.Akron, OH 44311(330) 376-0211fax: (330) 376-1226email: askASO@...home: byavorcik@...web: www.autismohio.org Please note: This is provided for information purposes only. The ASO does not endorse or recommend any providers, methodologies or services. Providing this information should not be construed as an endorsement by the ASO, either explicit or impiled.

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10 Things The Student with Autism Wishes You Knew (...and it makes sense for other kids too!) By Ellen Notbohm Author's note: When my article Ten Things Every Child with AutismWishes You Knew was first published in November 2004, I could scarcely haveimagined the response. Reader after reader wrote to tell me that the pieceshould be required reading for all social service workers, teachers andrelatives of children with autism. "Just what my daughter would say if shecould," said one mother. "How I wish I had read this five years ago. Ittook my husband and I such a long time to 'learn' these things," saidanother. As the responses mounted, I decided that the resonance was comingfrom the fact that the piece spoke with a child's voice, a voice not heardoften enough. There is great need - and I hope, great willingness - tounderstand the world as special needs children experience it. So the voiceof our child returns now to tell us what children with autism wish theirteachers knew. 1. Behavior is communication. All behavior occurs for a reason. Ittells you, even when my words can't, how I perceive what is happening aroundme. Negative behavior interferes with my learning process. But merelyinterrupting these behaviors is not enough; teach me to exchange thesebehaviors with proper alternatives so that real learning can flow. Start by believing this: I truly do want to learn to interactappropriately. No child wants the negative feedback we get from "bad"behavior. Negative behavior usually means I am overwhelmed by disorderedsensory systems, cannot communicate my wants or needs or don't understandwhat is expected of me. Look beyond the behavior to find the source of myresistance. Keep notes as to what happened immediately before the behavior:people involved, time of day, activities, settings. Over time, a patternmay emerge. 2. Never assume anything. Without factual backup, an assumption isonly a guess. I may not know or understand the rules. I may have heard theinstructions but not understood them. Maybe I knew it yesterday but can'tretrieve it today. Ask yourself: Are you sure I really know how to do what is being asked of me? If Isuddenly need to run to the bathroom every time I'm asked to do a mathsheet, maybe I don't know how or fear my effort will not be good enough.Stick with me through enough repetitions of the task to where I feelcompetent. I may need more practice to master tasks than other kids. Are you sure I actually know the rules? Do I understand the reason forthe rule (safety, economy, health)? Am I breaking the rule because there isan underlying cause? Maybe I pinched a snack out of my lunch bag earlybecause I was worried about finishing my science project, didn't eatbreakfast and am now famished. 3. Look for sensory issues first. A lot of my resistant behaviors comefrom sensory discomfort. One example is fluorescent lighting, which hasbeen shown over and over again to be a major problem for children like me.The hum it produces is very disturbing to my hypersensitive hearing, and thepulsing nature of the light can distort my visual perception, making objectsin the room appear to be in constant movement. An incandescent lamp on mydesk will reduce the flickering, as will the new, natural light tubes. Ormaybe I need to sit closer to you; I don't understand what you are sayingbecause there are too many noises "in between" - that lawnmower outside thewindow, Jasmine whispering to , chairs scraping, pencil sharpenergrinding. Ask the school occupational therapist for sensory-friendly ideas forthe classroom. It's actually good for all kids, not just me. 4. Provide me a break to allow for self-regulation before I need it. Aquiet, carpeted corner of the room with some pillows, books and headphonesallows me a place to go to re-group when I feel overwhelmed, but isn't sofar physically removed that I won't be able to rejoin the activity flow ofthe classroom smoothly. 5. Tell me what you want me to do in the positive rather than theimperative. "You left a mess by the sink!" is merely a statement of fact tome. I'm not able to infer that what you really mean is "Please rinse outyour paint cup and put the paper towels in the trash." Don't make me guessor have to figure out what I should do. 6. Keep your expectations reasonable. That all-school assembly withhundreds of kids packed into bleachers and some guy droning on about thecandy sale is uncomfortable and meaningless to me. Maybe I'd be better offhelping the school secretary put together the newsletter. 7. Help me transition between activities. It takes me a little longerto motor plan moving from one activity to the next. Give me a five-minutewarning and a two-minute warning before an activity changes - and build afew extra minutes in on your end to compensate. A simple clock face ortimer on my desk gives me a visual cue as to the time of the next transitionand helps me handle it more independently. 8. Don't make a bad situation worse. I know that even though you area mature adult, you can sometimes make bad decisions in the heat of themoment. I truly don't mean to melt down, show anger or otherwise disruptyour classroom. You can help me get over it more quickly by not respondingwith inflammatory behavior of your own. Beware of these responses thatprolong rather than resolve a crisis: _ Raising pitch or volume of your voice. I hear the yelling andshrieking, but not the words. _ Mocking or mimicking me. Sarcasm, insults or name-calling willnot embarrass me out of the behavior. _ Making unsubstantiated accusations _ Invoking a double standard _ Comparing me to a sibling or other student _ Bringing up previous or unrelated events _ Lumping me into a general category ("kids like you are all the same") 9. Criticize gently. Be honest - how good are you at accepting"constructive" criticism? The maturity and self-confidence to be able to dothat may be light years beyond my abilities right now. Should you nevercorrect me? Of course not. But do it kindly, so that I actually hear you. Please! Never, ever try to impose discipline or correction when I amangry, distraught, overstimulated, shut down, anxious or otherwiseemotionally unable to interact with you. Again, remember that I will react as much, if not more, to thequalities of your voice than to the actual words. I will hear the shoutingand the annoyance, but I will not understand the words and therefore willnot be able to figure out what I did wrong. Speak in low tones and loweryour body as well, so that you are communicating on my level rather thantowering over me. Help me understand the inappropriate behavior in a supportive,problem-solving way rather than punishing or scolding me. Help me pin downthe feelings that triggered the behavior. I may say I was angry but maybe Iwas afraid, frustrated, sad or jealous. Probe beyond my first response. Practice or role-play - show me-a better way to handle the situationnext time. A storyboard, photo essay or social story helps. Expect torole-play lots over time. There are no one-time fixes. And when I do get itright "next time," tell me right away. It helps me if you yourself aremodeling proper behavior for responding to criticism. 10. Offer real choices - and only real choices. Don't offer me achoice or ask a "Do you want...?" question unless are willing to accept nofor an answer. "No" may be my honest answer to "Do you want to read outloud now?" or "Would you like to share paints with ?" It's hard forme to trust you when choices are not really choices at all. You take for granted the amazing number of choices you have on a dailybasis. You constantly choose one option over others knowing that both havingchoices and being able to choose provides you control over your life andfuture. For me, choices are much more limited, which is why it can be harderto feel confident about myself. Providing me with frequent choices helps mebecome more actively engaged in everyday life. Whenever possible, offer a choice within a 'have-to'. Rather thansaying: "Write your name and the date on the top of the page," say: "Wouldyou like to write your name first, or would you like to write the datefirst?" or "Which would you like to write first, letters or numbers?"Follow by showing me: "See how is writing his name on his paper?" Giving me choices helps me learn appropriate behavior, but I also needto understand that there will be times when you can't. When this happens, Iwon't get as frustrated if I understand why: "I can't give you a choice in this situation because it is dangerous.You might get hurt." "I can't give you that choice because it would be bad for Danny" (havenegative effect on another child). "I give you lots of choices but this time it needs to be an adultchoice." The last word: believe. That car guy Henry Ford said, "Whether youthink you can or whether you think you can't, you are usually right."Believe that you can make a difference for me. It requires accommodationand adaptation, but autism is an open-ended disability. There are noinherent upper limits on achievement. I can sense far more than I cancommunicate, and the number one thing I can sense is whether or not youthink I "can do it." Expect more and you will get more. Encourage me to beeverything I can be, so that I can stay the course long after I've left yourclassroom. Ellen Notbohm is author of the new book Ten Things Every Child withAutism Wishes You Knew, winner of iParenting Media's Greatest Products of2005 Award, and co-author of 1001 Great Ideas for Teaching and RaisingChildren with Autism Spectrum Disorders, winner of Learning Magazine's 2006Teacher's Choice Award. She can be reached at ellen@...