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. Ten Things Every Child With Autism Wishes You Knew (Future Horizons) became a book in 2005, and the voice of our child returns in this article to tell us what children with autism wish their parents and teachers knew.
- Behavior is communication
- Never assume anything
- Look for sensory issues first
- Grant me a break to allow for self-regulation before I need it
- Tell me what you want me to do in the positive rather than the imperative
- Keep your expectations reasonable
- Help me transition between activities
- Don’t make a bad situation worse
- Criticize gently
- Offer real choices
Behavior is communication
Behavior tells you, even when my words can’t, how I perceive what is occurring. Teach me to exchange “bad” behaviors with proper alternatives so that real learning can flow. I 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 my behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior, documenting people involved, time of day, recent activities and current settings. A pattern may emerge.
Never assume anything
I may not know or understand the rules. I may have heard the instructions, but not understood them. Maybe I knew the information yesterday, but can’t retrieve it today. If I need to run to the bathroom every time I’m asked to do a math problem, maybe I don’t know how or fear my effort will fail. Repeat how to perform the task until I feel competent. And do I understand the reason for the rules— are they for education, safety or personal health? Is there an underlying cause prompting me to break the rules? Maybe I fished a snack from my lunch bag early because I was worried about finishing my science project and didn’t eat breakfast, making me famished.
Look for sensory issues first
A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting. The hum it produces disturbs my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, causing objects in the room to appear in constant movement. An incandescent lamp on my desk will reduce the flickering, as will 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,” like that lawn mower outside the classroom window, Jasmine whispering to Tanya, chairs scraping, the pencil sharpener grinding. Please ask the school occupational therapist for sensory-friendly ideas for the classroom. They’re helpful for all kids, not just me.
Grant me a break to allow for self-regulation before I need it
A quiet corner of the room with carpeting, some pillows, books and headphones allows me a place to regroup when I feel overwhelmed. Plus, it’s close enough that I may rejoin the activity flow of the classroom smoothly.
Tell me what you want me to do in the positive rather than the imperative
“You left a mess by the sink” is 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.
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 compile the newsletter.
Help me transition between activities
It takes me a little longer to 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.
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 don’t mean to melt down, show anger or otherwise disrupt your classroom. You can help escape the problematic situation by not responding with inflammatory behavior of your own. Be aware of responses that prolong rather than resolve a crisis, including raising the pitch or volume of your voice, mocking or mimicking me, making unsubstantiated accusations, comparing me to a sibling or other student, lumping me into a general category (“kids like you are all the same”) and bringing up previous or unrelated events.
Criticize gently
Never try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you. I will react as much, if not more, to the qualities of your voice than to your actual words. Please speak in low tones and lower your body to communicate on my level rather than tower over me. Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Also, show me by practicing or role playing a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role play many times to teach different lessons. There are no one-time fixes. And when I do get it right “next time,” tell me immediately.
Offer real choices
Don’t offer me a choice unless you are willing to accept “no” for an answer. No may be my honest answer to “Would you like to share paints with William?” It’s hard for me to trust you when choices are not truly choices. Instead, whenever possible, offer a choice within a have-to framework. 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?” 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. I won’t get as frustrated if I understand why, such as by you saying: “I can’t give you a choice in this situation because it is dangerous. You might get hurt.”
One final thing: 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. Advocate for me. I can sense far more than I can communicate, and the primary thing I sense is whether you think I can do it. Encourage me to be everything I can be, so that I can stay the course long after I’ve left the classroom.
A mother learns to see the world through the eyes of her autistic son.
