Ten Things Every Child With Autism Wishes You Knew
1.) I am first and foremost a child. 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 don’t 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 I may appear withdrawn or belligerent to you but I am really just trying to defend myself.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 today’s 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 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 3 with ammonia….I can’t 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. There’s 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 can’t even tell where my body is in space.
3.) Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges 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, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s 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. 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 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 “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5.) Please 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.
Or, there’s 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 don’t necessarily 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.) 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.
I won’t 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 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 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 don’t want to play with the other kids on the playground, but sometimes it’s 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 I’m 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, so I appreciate ongoing coaching in proper social responses. For example, 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 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.) Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t 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 I’m not 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 other people? Also true that I probably won’t 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.
They may have had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead?
All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.
© 2005 Ellen Notbohm.To contact Ellen or explore her work, please visit http://www.ellennotbohm.com.
Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.
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Notbohm, E. (2005). Ten Things Every Child With Autism Wishes You Knew. Arlington, TX: Future
Horizons.
Thank you for this. I usually only get on this page when I am having a hard time. If I get on it when things are ok I start to concentrate too much on my son's autism and less on him. I had a bad day today. I know you are nothing but a computer screen but I feel like I am talking to someone. My son is deaf and autistic. He has the most beautiful smile and the most horrid scream. I have a 1 and a half year old daughter who my son loves, but too much. He hugs her a lot, but too hard and he presses his groin into her and I know it is because he just wants to give her a tight love squeeze but it is obviously inappropriate. I don't want to step on his attempts to show love but I don't know how to tell him to be more careful. I sign it, but he doesn't get it. I take his hands and use hand ove hand to give her a hug but as soon as I let go he squeezes her so tight. I am afraid that she isn't going to like him (which I know is a dumb comment because they play all of the time). I am a scaredy cat. I am afraid to go anywhere by myself because I don't want him to have a meltdown. If my daughter throws a fit and people look I could care less, screw them. But if my baby throws a fit and people look it breaks my heart. I decided to go to Costco today with my kids. I bought a soda to use as a distraction for both of them (Yeah i know, mother of the year right??) At any rate my son threw a massive fit because he didn't want to get into the shopping cart. I can't have him walk because he will run away from me or drop to the floor when I don't go the way he wants and he 55 pounds! I was so disheartened. My first real attempt to go somewhere with both of my kids by myself and I ran away. And now I am terrified to try again. I kept repeating to myself so many times today that I needed to be patient but afterI made the third lunch that he wouldn't eat or the 50th time I asked him to stop groping his sister, or the 10th activity or game I tried to play to have a good day I lost it. I screamed at him and I got up in his face. I know that was the worst thing to do but I couldn't take it anymore. Usually when i have days like this I go to my mom's or my sister's but they are out of town and my husband was at work. I feel like the worst mom in the world. He was so scared of me and at the time I didn't care, I just wanted him to get away from me. Thank you so much for the reminder that he did not chose to be this way and that he does not process information the same way we do (especially since he is deaf too.) I know God is supposed to be all knowing but I swear he made a mistake ... there's no way he really thought that I was strong enough to do this. I hope I don't screw up my son too much. I hope he knows that I love him ... I hope he loves me.
Thank you for "listening" .
I just bought this book but for parents, to help my husband understand more, he has been deployed 20 months out of 30 of my sons life. Thanks for sharing!
Perfect....I'm printing out at least a dozen copies for teachers, friends and family members that just "don't get it"! Thanks Bunches!!!!
Hi gals...just a suggestion...might want to check with Ellen Notbohm, the author, before reproducing these sheets. She has requested permission to print this information and also to post this information via internet. http://www.ellennotbohm.com/ten_things_article.html My guess is she wouldn't have a problem, if you made sure you printed the book from which the information is taken. It's copywritten. You can email her via this site...
I notice it's noted at the bottom of the sheet.
By the way, the book on its own is a good book to give to adults as a basic introduction to autism.
Thank you, thank you and thank you.....my son's school seems to be having a hard time understanding ANY of these things because my son is pretty high functioning. Then when he doesn't understand something they either blame me or get upset as to why he doesn't get it. I think EVERY teacher should HAVE to read this.....
Quoting AisForAutism:
Hi gals...just a suggestion...might want to check with Ellen Notbohm, the author, before reproducing these sheets. She has requested permission to print this information and also to post this information via internet. http://www.ellennotbohm.com/ten_things_article.html My guess is she wouldn't have a problem, if you made sure you printed the book from which the information is taken. It's copywritten. You can email her via this site...
I notice it's noted at the bottom of the sheet.
By the way, the book on its own is a good book to give to adults as a basic introduction to autism.
Thanks for the information, just letting everyone know, this article came from our Local Chapter for Autism. Our Chapter President has permission from Ellen Notbohm to send out any & all information from her. I agree with this poster, Great Book with Great Information.
Notbohm, E. (2005). Ten Things Every Child With Autism Wishes You Knew. Arlington, TX: Future Horizons
thank you -- a reminder for even those of us that know. At my/our age, patience is not just a virture, it is an often "forgotten' skill. You and I have "spoken" before. Miss V is still with us - finally, it is legal and physical custody. Mydaugher's rights were not terminated; nor does she have any parental rights. The final order did not even address any visitation. In court, the judge said it was up to my husband and me if we let her see Miss V at all.
Miss V will enter her first fulll year of special ed preschool in a few days. So far, our service team for the most part has worked together fantastically. When that changes .... they're gonna hear from me LOUDLY again .... I can do that.
Quoting DeafnAutistic:
Thank you for this. I usually only get on this page when I am having a hard time. If I get on it when things are ok I start to concentrate too much on my son's autism and less on him. I had a bad day today. I know you are nothing but a computer screen but I feel like I am talking to someone. My son is deaf and autistic. He has the most beautiful smile and the most horrid scream. I have a 1 and a half year old daughter who my son loves, but too much. He hugs her a lot, but too hard and he presses his groin into her and I know it is because he just wants to give her a tight love squeeze but it is obviously inappropriate. I don't want to step on his attempts to show love but I don't know how to tell him to be more careful. I sign it, but he doesn't get it. I take his hands and use hand ove hand to give her a hug but as soon as I let go he squeezes her so tight. I am afraid that she isn't going to like him (which I know is a dumb comment because they play all of the time). I am a scaredy cat. I am afraid to go anywhere by myself because I don't want him to have a meltdown. If my daughter throws a fit and people look I could care less, screw them. But if my baby throws a fit and people look it breaks my heart. I decided to go to Costco today with my kids. I bought a soda to use as a distraction for both of them (Yeah i know, mother of the year right??) At any rate my son threw a massive fit because he didn't want to get into the shopping cart. I can't have him walk because he will run away from me or drop to the floor when I don't go the way he wants and he 55 pounds! I was so disheartened. My first real attempt to go somewhere with both of my kids by myself and I ran away. And now I am terrified to try again. I kept repeating to myself so many times today that I needed to be patient but afterI made the third lunch that he wouldn't eat or the 50th time I asked him to stop groping his sister, or the 10th activity or game I tried to play to have a good day I lost it. I screamed at him and I got up in his face. I know that was the worst thing to do but I couldn't take it anymore. Usually when i have days like this I go to my mom's or my sister's but they are out of town and my husband was at work. I feel like the worst mom in the world. He was so scared of me and at the time I didn't care, I just wanted him to get away from me. Thank you so much for the reminder that he did not chose to be this way and that he does not process information the same way we do (especially since he is deaf too.) I know God is supposed to be all knowing but I swear he made a mistake ... there's no way he really thought that I was strong enough to do this. I hope I don't screw up my son too much. I hope he knows that I love him ... I hope he loves me.
Thank you for "listening" .
I think you're being to hard on yourself. We all feel this way at some time. Feeling guilty is just a part of our nature. God did not make a mistake, you are strong enough to do this.
Anyone tried the BODY ECOLOGY diet?
- MamaRita
on Aug. 2, 2008 at 9:28 AM