10 Things the Person with Autism Wishes you Knew

(excerpts from Ellen Notbohm)

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.  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, setting.  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. 

Are you sure I really know how to do what is being asked?  Are you sure I actually know the rules?   Stick with me through enough repetitions of a task to where I feel competent.  I may need more practice than others. 

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.  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 occupational therapist for sensory-friendly ideas for the classroom.

4. Provide me with 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 regroup when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the room 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 fact 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 meld 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 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.
• Making unsubstantiated accusations: I will argue with you.
• Invoking a double standard.
• Comparing me to a sibling or other peer.
• Bringing up previous or unrelated events: I will get confused.

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.  Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

Please!  Never, ever try to impose discipline or correction when I am angry, distraught, over-stimulated, shut down, anxious, or otherwise emotionally unable to interact with you.  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.

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 fore 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 you 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 that provide you with control over your life.  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 engaged.  I also need to understand that there will be times when you can’t give me choices.  Just explain it to me; “I give you lots of choices but this time it needs to be an adult choice.”

The last word: believe.  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 limits on achievement.  Encourage me to be everything I can be so that I can stay the course long after our time together.