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10 Things Every Child with Autism Wishes You Knew By Ellen Notbohrn
The child who lives with Autism may look “normal” but his or her behavior can be perplexing and downright difficult. Today, the citadel of autism, once thought of as an incurable disorder, is cracking around the foundation. Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of the condition’s most challenging aspects.
Equipping those around our children with a simple understand of autism’s most basic elements has a tremendous effect on the children’s journey toward productive, independent lives. Autism is an extremely complex disorder, but we can distill it to three critical components:
• Sensory processing difficulties
• Speech/language delays and impairments
• Child/social interaction
Here are 10 things every child with autism wishes you knew.
1. I am a child with autism. I am not autistic. My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wears glasses), or klutzy (uncoordinated, not good at sports)?
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A “simple” trip to the grocery store may be hell for me. My hearing may be acute. Dozens of people are talking all at once. The loudspeaker boom today’s special. Music whines from the sound system, Cash registers beep and cough. A coffee grinder is chugging. The meant cutter screeches, babies wail, carts creak, the 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 me hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper and they are mopping up pickles on Aisle 3 with ammonia. I can’t sort it all out. I am nauseous. Because I am visually oriented, this may be my first sense over- stimulated. The fluorescent light is too bright it makes the room pulsate and hurt my eyes. Sometimes the light bounces off everything and distorts what I’m seeing. The space seems to be constantly changing. There’s a glare from the windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to focus. I may compensate with tunnel vision. All this affects my vestibular sense, and now I can’t tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
3. Please remember to distinguish between won’t (I chose not to) and can’t (I’m unable to). Receptive and expressive languages are both difficult for me. 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 can’t understand you. Instead, come speak to me directly to me in plain words. “Please put your book in your desk. It is time to go to lunch.” This tells me what you want me to do and what is going to happen. Now it’s much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me is a piece of cake when there is no dessert in sight and what you mean is, “This will be easy for you to do.” Idioms, puns, nuances, double entendres and sarcasm are lost on me.
5. Be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. There is a flip side to this. I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. There are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. they may come from books, television or the speech of other people. Its echolalia. I don’t necessarily understand the context or the terminology I’m using. I just know it gets me off the hook for coming up with a reply.
6. Because language is difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn. A visual schedule is extremely helpful as move through my day. Like your day planner, it relieves me of stress of having to remember what comes next, makes for a smooth transition between activities and helps me manage my time and meet your expectations.
7. Focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough or that I need fixing. Trying anything new I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you will find them. There’s more than one way to do things.
8. Help me with social interactions. It may look like I don’t to play with the other kids on the playground, but sometimes I simply don’t know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them I may be delighted to be included.
9. Try to identify what triggers my meltdowns. This is termed “the antecedent”. Meltdowns, blowups, or tantrums are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns happen, they can be prevented.
10.If you are a family member, please love me unconditionally. Banish thoughts such as, “if he would just…” and “why can’t she…?”. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I am worth it.
It all comes down to three words- patience, patience, patience.
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation but have you noticed that I don’t lie, cheat at games tattle on my classmates or pass judgment on others?
You are my foundation. Think of the social rules, and if they don’t make sense for me, let them go. be my advocate, be my friend and we’ll see just how far we can go. I probably won’t be the next Michael Jordan, but with my attention to detail and capacity for extraordinary focus. I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism, too.