Autism was once thought an incurable disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autisms most challenging characteristics. Equipping those around our children with simple understanding of autisms most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am first and foremost a child. I have autism. I am not primarily autistic. My autism is only 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 (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you dont think I can do it, my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday 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. Here is why a simple trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms todays special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain cant filter all the input and Im in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isnt quite fresh, the guy standing next to us hasnt showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, theyre mopping up pickles on aisle 3 with ammonia .I cant sort it all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. Theres glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I cant even tell where my body is in space.
3. Please remember to distinguish between wont (I choose not to) and cant (I am not able to).
Receptive and expressive language and vocabulary can be major challenges for me. It isnt that I dont listen to instructions. Its that I cant understand you. When you call to me from across the room, this is what I hear: *&^%$#@, Billy. #$%^*&^%$&* Instead, come speak directly to me in plain words: Please put your book in your desk, Billy. Its time to go to lunch. This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. Its very confusing for me when you say, Hold your horses, cowboy! when what you really mean is Please stop running. Dont tell me something is a piece of cake when there is no dessert in sight and what you really mean is this will be easy for you to do. When you say Its pouring cats and dogs, I see pets coming out of a pitcher. Please just tell me Its raining very hard.
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. Its hard for me to tell you what I need when I dont 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.
Or, theres a flip side to this: I may sound like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. These 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, TV, the speech of other people. It is called echolalia. I dont necessarily understand the context or the terminology Im using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Heres a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm .
I wont lose the need for a visual schedule as I get older, but my level of representation may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Please focus and build on what I can do rather than what I cant do. Like any other human, I cant learn in an environment where Im constantly made to feel that Im not good enough and that I need fixing. Trying anything new when 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 is more than one right way to do most things.
8. Please help me with social interactions. It may look like I dont want to play with the other kids on the playground, but sometimes its just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that Im delighted to be included.
I do best in structured play activities that have a clear beginning and end. I dont know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, its not that I think its funny. Its that I dont know the proper response. Teach me to say Are you OK?
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them 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 occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. If you are a family member, please love me unconditionally. Banish thoughts like, If he would just and Why cant she .. You did not fulfill every last expectation your parents had for you and you wouldnt like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. 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.
And finally, 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. It may be true that Im not good at eye contact or conversation, but have you noticed that I dont lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably wont be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazines 2006 Teachers Choice Award. A columnist for Autism Aspergers Digest, her articles on autism have also appeared in numerous parenting magazines and over 150 websites. Your comments and requests for reprint permission are welcome at firstname.lastname@example.org.
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