10 Things The Student with Autism Wishes You Knew

[Guest guest]

Diane and Dad--I thought this was great. I think I will give it to Grant's

teachers--what do you think??

Maureen

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

Autism

Wishes You Knew was first published in November 2004, I could scarcely

have

imagined the response. Reader after reader wrote to tell me that the

piece

should be required reading for all social service workers, teachers and

relatives of children with autism. " Just what my daughter would say if

she

could, " said one mother. " How I wish I had read this five years ago.

It

took my husband and I such a long time to 'learn' these things, " said

another. As the responses mounted, I decided that the resonance was

coming

from the fact that the piece spoke with a child's voice, a voice not

heard

often enough. There is great need - and I hope, great willingness - to

understand the world as special needs children experience it. So the

voice

of our child returns now to tell us what children with autism wish

their

teachers knew.

1. Behavior is communication. All behavior occurs for a reason.

It

tells you, even when my words can't, how I perceive what is happening

around

me. Negative behavior interferes with my learning process. But merely

interrupting these behaviors is not enough; teach me to exchange these

behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact

appropriately. No child wants the negative feedback we get from " bad "

behavior. Negative behavior usually means I am overwhelmed by

disordered

sensory systems, cannot communicate my wants or needs or don't

understand

what is expected of me. Look beyond the behavior to find the source of

my

resistance. Keep notes as to what happened immediately before the

behavior:

people involved, time of day, activities, settings. Over time, a

pattern

may emerge.

2. Never assume anything. Without factual backup, an assumption

is

only a guess. I may not know or understand the rules. I may have heard

the

instructions but not understood them. Maybe I knew it yesterday but

can't

retrieve it today. Ask yourself:

Are you sure I really know how to do what is being asked of me?

If I

suddenly need to run to the bathroom every time I'm asked to do a math

sheet, 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 feel

competent. I may need more practice to master tasks than other kids.

Are you sure I actually know the rules? Do I understand the

reason for

the rule (safety, economy, health)? Am I breaking the rule because

there is

an underlying cause? Maybe I pinched a snack out of my lunch bag early

because I was worried about finishing my science project, didn't eat

breakfast and am now famished.

3. Look for sensory issues first. A lot of my resistant behaviors

come

from sensory discomfort. One example is fluorescent lighting, which

has

been 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 the

pulsing nature of the light can distort my visual perception, making

objects

in the room appear to be in constant movement. An incandescent lamp on

my

desk will reduce the flickering, as will the new, natural light tubes.

Or

maybe I need to sit closer to you; I don't understand what you are

saying

because there are too many noises " in between " - that lawnmower outside

the

window, Jasmine whispering to , chairs scraping, pencil sharpener

grinding.

Ask the school occupational therapist for sensory-friendly ideas

for

the 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. A

quiet, carpeted corner of the room with some pillows, books and

headphones

allows me a place to go to re-group when I feel overwhelmed, but isn't

so

far physically removed that I won't be able to rejoin the activity flow

of

the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the

imperative. " You left a mess by the sink! " is merely a statement of

fact to

me. I'm not able to infer that what you really mean is " Please rinse

out

your paint cup and put the paper towels in the trash. " Don't make me

guess

or have to figure out what I should do.

6. Keep your expectations reasonable. That all-school assembly

with

hundreds of kids packed into bleachers and some guy droning on about

the

candy sale is uncomfortable and meaningless to me. Maybe I'd be better

off

helping the school secretary put together the newsletter.

7. Help me transition between activities. It takes me a little

longer

to motor plan moving from one activity to the next. Give me a

five-minute

warning and a two-minute warning before an activity changes - and

build a

few extra minutes in on your end to compensate. A simple clock face or

timer on my desk gives me a visual cue as to the time of the next

transition

and helps me handle it more independently.

8. Don't make a bad situation worse. I know that even though you

are

a mature adult, you can sometimes make bad decisions in the heat of the

moment. I truly don't mean to melt down, show anger or otherwise

disrupt

your classroom. You can help me get over it more quickly by not

responding

with inflammatory behavior of your own. Beware of these responses that

prolong rather than resolve a crisis:

_ Raising pitch or volume of your voice. I hear the yelling

and

shrieking, but not the words.

_ Mocking or mimicking me. Sarcasm, insults or name-calling

will

not 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 do

that may be light years beyond my abilities right now. Should you never

correct 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 am

angry, distraught, overstimulated, shut down, anxious or otherwise

emotionally unable to interact with you.

Again, remember that I will react as much, if not more, to the

qualities of your voice than to the actual words. I will hear the

shouting

and the annoyance, but I will not understand the words and therefore

will

not be able to figure out what I did wrong. Speak in low tones and

lower

your body as well, so that you are communicating on my level rather

than

towering over me.

Help me understand the inappropriate behavior in a supportive,

problem-solving way rather than punishing or scolding me. Help me pin

down

the feelings that triggered the behavior. I may say I was angry but

maybe I

was afraid, frustrated, sad or jealous. Probe beyond my first response.

Practice or role-play - show me-a better way to handle the

situation

next time. A storyboard, photo essay or social story helps. Expect to

role-play lots over time. There are no one-time fixes. And when I do

get it

right " next time, " tell me right away. It helps me if you yourself are

modeling proper behavior for responding to criticism.

10. Offer real choices - and only real choices. Don't offer me a

choice or ask a " Do you want...? " question unless are willing to accept

no

for an answer. " No " may be my honest answer to " Do you want to read

out

loud now? " or " Would you like to share paints with ? " It's

hard for

me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a

daily

basis. You constantly choose one option over others knowing that both

having

choices and being able to choose provides you control over your life

and

future. For me, choices are much more limited, which is why it can be

harder

to feel confident about myself. Providing me with frequent choices

helps me

become more actively engaged in everyday life.

Whenever possible, offer a choice within a 'have-to'. Rather than

saying: " Write your name and the date on the top of the page, " say:

" Would

you like to write your name first, or would you like to write the date

first? " 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

need

to understand that there will be times when you can't. When this

happens, I

won'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 "

(have

negative effect on another child).

" I give you lots of choices but this time it needs to be an adult

choice. "

The last word: believe. That car guy Henry Ford said, " Whether

you

think you can or whether you think you can't, you are usually right. "

Believe that you can make a difference for me. It requires

accommodation

and adaptation, but autism is an open-ended disability. There are no

inherent upper limits on achievement. I can sense far more than I can

communicate, and the number one thing I can sense is whether or not you

think I " can do it. " Expect more and you will get more. Encourage me

to be

everything I can be, so that I can stay the course long after I've left

your

classroom.

Ellen Notbohm is author of the new book Ten Things Every Child

with

Autism Wishes You Knew, winner of iParenting Media's Greatest Products

of

2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising

Children with Autism Spectrum Disorders, winner of Learning Magazine's

2006

Teacher's Choice Award. She can be reached at ellen@...

(...and it makes sense for other kids too!)

By Ellen Notbohm

Author's note: When my article Ten Things Every Child with

Autism

Wishes You Knew was first published in November 2004, I could scarcely

have

imagined the response. Reader after reader wrote to tell me that the

piece

should be required reading for all social service workers, teachers and

relatives of children with autism. " Just what my daughter would say if

she

could, " said one mother. " How I wish I had read this five years ago.

It

took my husband and I such a long time to 'learn' these things, " said

another. As the responses mounted, I decided that the resonance was

coming

from the fact that the piece spoke with a child's voice, a voice not

heard

often enough. There is great need - and I hope, great willingness - to

understand the world as special needs children experience it. So the

voice

of our child returns now to tell us what children with autism wish

their

teachers knew.

1. Behavior is communication. All behavior occurs for a reason.

It

tells you, even when my words can't, how I perceive what is happening

around

me. Negative behavior interferes with my learning process. But merely

interrupting these behaviors is not enough; teach me to exchange these

behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact

appropriately. No child wants the negative feedback we get from " bad "

behavior. Negative behavior usually means I am overwhelmed by

disordered

sensory systems, cannot communicate my wants or needs or don't

understand

what is expected of me. Look beyond the behavior to find the source of

my

resistance. Keep notes as to what happened immediately before the

behavior:

people involved, time of day, activities, settings. Over time, a

pattern

may emerge.

2. Never assume anything. Without factual backup, an assumption

is

only a guess. I may not know or understand the rules. I may have heard

the

instructions but not understood them. Maybe I knew it yesterday but

can't

retrieve it today. Ask yourself:

Are you sure I really know how to do what is being asked of me?

If I

suddenly need to run to the bathroom every time I'm asked to do a math

sheet, 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 feel

competent. I may need more practice to master tasks than other kids.

Are you sure I actually know the rules? Do I understand the

reason for

the rule (safety, economy, health)? Am I breaking the rule because

there is

an underlying cause? Maybe I pinched a snack out of my lunch bag early

because I was worried about finishing my science project, didn't eat

breakfast and am now famished.

3. Look for sensory issues first. A lot of my resistant behaviors

come

from sensory discomfort. One example is fluorescent lighting, which

has

been 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 the

pulsing nature of the light can distort my visual perception, making

objects

in the room appear to be in constant movement. An incandescent lamp on

my

desk will reduce the flickering, as will the new, natural light tubes.

Or

maybe I need to sit closer to you; I don't understand what you are

saying

because there are too many noises " in between " - that lawnmower outside

the

window, Jasmine whispering to , chairs scraping, pencil sharpener

grinding.

Ask the school occupational therapist for sensory-friendly ideas

for

the 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. A

quiet, carpeted corner of the room with some pillows, books and

headphones

allows me a place to go to re-group when I feel overwhelmed, but isn't

so

far physically removed that I won't be able to rejoin the activity flow

of

the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the

imperative. " You left a mess by the sink! " is merely a statement of

fact to

me. I'm not able to infer that what you really mean is " Please rinse

out

your paint cup and put the paper towels in the trash. " Don't make me

guess

or have to figure out what I should do.

6. Keep your expectations reasonable. That all-school assembly

with

hundreds of kids packed into bleachers and some guy droning on about

the

candy sale is uncomfortable and meaningless to me. Maybe I'd be better

off

helping the school secretary put together the newsletter.

7. Help me transition between activities. It takes me a little

longer

to motor plan moving from one activity to the next. Give me a

five-minute

warning and a two-minute warning before an activity changes - and

build a

few extra minutes in on your end to compensate. A simple clock face or

timer on my desk gives me a visual cue as to the time of the next

transition

and helps me handle it more independently.

8. Don't make a bad situation worse. I know that even though you

are

a mature adult, you can sometimes make bad decisions in the heat of the

moment. I truly don't mean to melt down, show anger or otherwise

disrupt

your classroom. You can help me get over it more quickly by not

responding

with inflammatory behavior of your own. Beware of these responses that

prolong rather than resolve a crisis:

_ Raising pitch or volume of your voice. I hear the yelling

and

shrieking, but not the words.

_ Mocking or mimicking me. Sarcasm, insults or name-calling

will

not 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 do

that may be light years beyond my abilities right now. Should you never

correct 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 am

angry, distraught, overstimulated, shut down, anxious or otherwise

emotionally unable to interact with you.

Again, remember that I will react as much, if not more, to the

qualities of your voice than to the actual words. I will hear the

shouting

and the annoyance, but I will not understand the words and therefore

will

not be able to figure out what I did wrong. Speak in low tones and

lower

your body as well, so that you are communicating on my level rather

than

towering over me.

Help me understand the inappropriate behavior in a supportive,

problem-solving way rather than punishing or scolding me. Help me pin

down

the feelings that triggered the behavior. I may say I was angry but

maybe I

was afraid, frustrated, sad or jealous. Probe beyond my first response.

Practice or role-play - show me-a better way to handle the

situation

next time. A storyboard, photo essay or social story helps. Expect to

role-play lots over time. There are no one-time fixes. And when I do

get it

right " next time, " tell me right away. It helps me if you yourself are

modeling proper behavior for responding to criticism.

10. Offer real choices - and only real choices. Don't offer me a

choice or ask a " Do you want...? " question unless are willing to accept

no

for an answer. " No " may be my honest answer to " Do you want to read

out

loud now? " or " Would you like to share paints with ? " It's

hard for

me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a

daily

basis. You constantly choose one option over others knowing that both

having

choices and being able to choose provides you control over your life

and

future. For me, choices are much more limited, which is why it can be

harder

to feel confident about myself. Providing me with frequent choices

helps me

become more actively engaged in everyday life.

Whenever possible, offer a choice within a 'have-to'. Rather than

saying: " Write your name and the date on the top of the page, " say:

" Would

you like to write your name first, or would you like to write the date

first? " 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

need

to understand that there will be times when you can't. When this

happens, I

won'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 "

(have

negative effect on another child).

" I give you lots of choices but this time it needs to be an adult

choice. "

The last word: believe. That car guy Henry Ford said, " Whether

you

think you can or whether you think you can't, you are usually right. "

Believe that you can make a difference for me. It requires

accommodation

and adaptation, but autism is an open-ended disability. There are no

inherent upper limits on achievement. I can sense far more than I can

communicate, and the number one thing I can sense is whether or not you

think I " can do it. " Expect more and you will get more. Encourage me

to be

everything I can be, so that I can stay the course long after I've left

your

classroom.

Ellen Notbohm is author of the new book Ten Things Every Child

with

Autism Wishes You Knew, winner of iParenting Media's Greatest Products

of

2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising

Children with Autism Spectrum Disorders, winner of Learning Magazine's

2006

Teacher's Choice Award. She can be reached at ellen@...

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