Autism: Through My Eyes
10 things kids with autism want the world to know
1. I am a child.
My autism is part of who I am, not all of who I am. Are you overweight, klutzy or do you wear glasses? Those may be things I see first when I meet you, but you’re more than just that, aren’t you? As an adult, you have control over how you define yourself. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, “Why try?”
2. My senses are out of sync.
Ordinary sights, sounds, smells, tastes and touches you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me. My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, 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 three with ammonia. I feel like throwing up.
And there’s so much hitting my eyes! The fluorescent light is not only too bright; it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision). All this affects how I feel just standing there, and now I can’t even tell where my body is in space.
3. Distinguish between “won’t” (I choose not to) and “can’t” (I am not able to).
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, I hear “*&^%$#@, Jordan. #$%^*&^%$&*.” Instead, come over to me, get my attention and speak in plain words: “Jordan, put your book in your desk. It’s time to go.” 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’m a concrete thinker.
I interpret language literally. You confuse me by saying, “Hold your horses, cowboy!” when what you mean is “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is “This will be easy for you to do.” Idioms, puns, nuances, inferences, metaphors, allusions and sarcasm are lost on me.
5. Listen to all the ways I’m trying to communicate.
It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there. Or you may hear me compensate for not having all the words I need by rattling off words or whole scripts well beyond my developmental age, like a little professor or movie star. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. Grownups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
6. I’m visually oriented.
Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn. Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.
I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need and will be just the same when I come back to them later.
7. Focus and build on what I can do rather than what I can’t do.
Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is 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 other kids, but it may be that I simply do not know how to start a conversation or join in. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you OK?”
9. Identify what triggers my meltdowns.
Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people and activities. A pattern may emerge.
Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me.
10. Love me unconditionally.
Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every 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 growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.
Three words we both need to live by: Patience. Patience. Patience. View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.
From the book Ten Things Every Child With Autism Wishes You Knew, updated and expanded issue (2012) by Ellen Notbohm (EllenNotbohm.com).