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 Tanya,
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
- Mocking or mimicking
me. Sarcasm, insults or name-calling will not embarrass me out
of the behavior.
- Making unsubstantiated
- Invoking a double
- 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
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 William?" 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
first?" or "Which would you like to write first, letters
or numbers?" Follow by showing me: "See how Jason 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
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 email@example.com