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Ten Things Your Student with Autism Wishes You Knew

Ten Things Your Student with Autism Wishes You Knew

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Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in 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 ever-increasing willingness – for the general population to understand the world as the child with autism experiences it. Ten Things Every Child with Autism Wishes You Knew became a book in 2005, and the voice of our child returned in this article to tell us what children with autism wish their teachers knew. It too became quite popular and my book by the same title was published in 2006.

To contact Ellen or explore her work, please visit www.ellennotbohm.com.

Here are ten things your student with autism wishes you knew:

1. Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me.

Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact appropriately. No child wants the spirit-crushing feedback we get from "bad" behavior. 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 the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.

2. Never assume anything. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them.

Maybe I knew it yesterday but can't retrieve it today. Ask yourself:

  • Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.
  • Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.

3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort.

One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, 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" – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.

Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me.

4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the imperative. "You left a mess by the sink!" is merely 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.

6. 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 put together the newsletter.

7. Help me transition between activities. It takes me a little longer to motor 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.

8. 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 truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:

  • Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
  • Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.
  • Making unsubstantiated accusations
  • Invoking a double standard
  • Comparing me to a sibling or other student
  • Bringing up previous or unrelated events
  • Lumping me into a general category ("kids like you are all the same")

9. Criticize gently. Be honest – how good are you at accepting "constructive" criticism? Thematurity and self-confidence to be able to do that may be far beyond my abilities right now.

  • Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.
  • Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.
  • Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.
  • Practice or role-play – show me—a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away.
  • It helps me if you yourself are modeling proper behavior for responding to criticism.

10. Offer real choices – and only real choices. Don't offer me a choice or ask a "Do you want…?" question unless are willing to accept no for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.

  • Whenever possible, offer a choice within a 'have-to'. 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?" or "Which would you like to write first, letters or numbers?" 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. When this happens, I won't get as frustrated if I understand why:

1. "I can't give you a choice in this situation because it is dangerous. You might get hurt."

2. "I can't give you that choice because it would be bad for Danny" (have negative effect on another child).

3. "I give you lots of choices but this time it needs to be an adult choice."

The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended learning difference. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether you think I "can do it." Encourage me to be everything I can be, so that I can continue to grow and succeed long after I've left your classroom.


Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, and a contributor to numerous publications and websites around the world. To contact Ellen or explore her work, please visit www.ellennotbohm.com. Join Ellen’s community of Facebook fans at Ellen Notbohm, Author.

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Anonymous October 28, 2014

I noticed that a few of these points apply to any student, not only students with Autism. Reply

Anonymous April 11, 2013

To: Sarah from W Bloomfield Re: child with autism and Halacha Thank you Sarah for the information and your advice, it was greatly appreciated.
I thought to myself, there must be children who are profoundly autistic in the Orthodox community as well, and was curious as to how parents managed
in terms of Halacha. Your friend's story about her rabbi refraining from giving advice till asked, was also insightful. I have since also found that there are many substitute food items and substitutes for flour etc through Chabad.Org's links, that can be used during Passover , which was great. As the child grows taller and stronger, clever ways of preventing tantrums need to be thought out in advance for the parents and child's sake.
My admiration always, for the Orthodox community. Reply

Sarah Masha W Bloomfield, MI, USA April 9, 2013

Anon 23 Mar 13 Yes, in many cases there are heterim (permission to act outside of the usual requirements of halacha, law) for many circumstances. The care of children with special needs is one of the more common reasons for people consulting with rabbis for this. For a heter you must consult your rabbi who knows your situation. If he feels uncomfortable because he is not total conversant with the area of law needed he may refer you to another rabbi.

Each family, and each member within a family, is different, and seemingly minor differences can make a huge difference in halacha. Do not assume that a ruling for you will be repeated for your friend. And please remember that rabbis are gratified by the fact that people care about halacha enough to ask for heterim when they are needed. Do not be shy about asking rabbis questions! (I had a friend who after I pushed her finally went to the rabbi. He said he knew her situation was not bearable, he was waiting for her to ask, but could not offer...) Reply

Anonymous March 23, 2013

autistic children I am an outsider but was interested in knowing how the parents of profoundly autistic children in the Orthodox community cope with the child's fixation on certain foods and activities when there are Holidays such as Passover when they cannot have certain food, or during Shabbat when there are also certain positive and negative mitzvot to adhere to. You people are very resilient so it would be helpful to get some ideas. Or are there some leniency applied in such cases? Reply

Lisalt23 Carmel, USA June 14, 2012

Believe The last paragraph is moving. Believe in your child/children for they are young and they have mind/s that should not be wasted. Reply

Rabbi Zalman Nelson Tsfat, Israel January 15, 2012

Dear Question It's very important with everything that we realize what G-d expects from us and be satisfied with that. We are expected to all we can in any given situation and with ourselves in terms of thoughts, speech, actions, and decisions. Everything else is in G-d's capable hands, and He's trustworthy to do everything in our best interests. IN fact, He knows what we need better than we do.

Thus, your son has to be in the school where he is. Outside of that, there's much you can do in the home, as well as, and most importantly, being a happy living example of observing Judaism. The more you do and keep and connect to your Judaism and bring it into your daily life, the more your son gets the most important lessons: being Jewish in deed matters, and it's the best thing in life.

And that's something you certainly can convey to him and be sure he's absorbing.

May you have much joy and nachas from your son, and him from you! Reply

Anonymous Pittsburgh, PA December 20, 2011

Question I know you can't answer this, I guess I am wishing for a crystal ball ;) so on that note, how do I know how much my very smart and not so verbal child with autism, how much Torah he is taking in or understanding. He is currently in an outstanding and very supportive school for kids on the spectrum, but it is not Jewish. I know he needs all of the incredible amounts of therapy they give him there, but at times I still wish he could somehow be in a Jewish school, at least part time. He is the sweetest thing and we love him to pieces! I wish I knew what is going on in that brain of his. Reply

Mya Warren, OR December 20, 2011

"The Cure" I agree with your statement about curing autism. If I had a chance to "cure" my son, I wouln't. He is who he is, I wouldn't want to change him for anything. He loves who he is, I know he does, he is SUCH a happy boy.
Thank you for sharing more! Reply

Iliana Madison December 18, 2011

As a person... I have a couple to add that might or might not apply in a school situation.

1. (Elaborating on 8) Lumping me into a category with all autistic people isn't just bad if it's a criticism. I don't expect you to be just like my cousin/friend/classmate without autism, so don't expect me to be just like your cousin/friend/classmate with autism. Don't expect me to conform to a stereotypical definition of my disorder (ex. "so you must be really good at math!" Actually, no, I suck at it. On the other hand, I'm really good at theater.)

2. Don't come up to me and say you support Autism Speaks or some other group that advocates "the cure." Autism is a part of who I am. What I hear when you say that is "I want to remove you from your body and exchange you for a stranger with your body." Really.

3. I know my own capabilities. It doesn't do anything for me when you tell me I can't do something I know I can or when you get mad because you assume I could do something I can't if I really wanted to. Reply

Mya Portland, OR September 12, 2011

My youngest son is autistic My 6 almost 7 year old son is autistic. This was very interesting information. Anything I can do to learn and understand more is great. Thank you! Reply

Anonymous March 8, 2010

Mother Reading this brought tears to my eyes. When learning our son had autism I began reading a lot. One of the books I purchased was "Ten Things Every Child with Autism Wishes You Knew". It was a great book, short but full of information. I wish every family member would take the time to read this book for their nephew, niece, cousin, grandchild etc... whoever it may be that may have autism. It is a special way of showing support and showing you care. These kind of articles should be in "regular" magazines / websites more often! (not just magazines or web sights for special needs.) Chances of someone taking the time to stop and learn a little about someone on the spectrum is much more likely if they come across it in a place where they frequent often.
Thank you for publishing this article here. Reply

Alice Kell USA March 7, 2010

Let me add..... I have Asperger's, as do both of my children.
Here are some more things to remember when working or socializing with people like us:

11. Presume intellect. Autistic doesn't mean stupid.

12. Don't talk about a person with autism as if we weren't there. We take everything in. Autism is a problem with output, not input.

On giving tasks: It definitely helps to break down tasks. "Go clean your room" overwhelms my children, as it did me. I tell my boys "put your dirty clothes in the hamper" or "put your board game in the game closet" -- one thing at a time. It takes longer for one of us than it does with a child who is "neurotypical" or Born Organized, but breaking it down helps us stay on task. Reply

Laurie Morgen Derby, Englad March 5, 2010

University Student with Autism I am a mature student with autism and also the parent of two sons with the same condition. This would be good atricle to send to my youngest son's college. Sadly, it's hard to break through into a closed mind and far too many educators think they know everything about autism, which may be true but knowledge is not the same as understanding.

I was quite surprised to find this article here as I usually only autism related articels on autism websites so how good the message is reaching the wider world.

Is there going to be a book out called 'What Every University Student Wishes You Knew About Autism?' I would happily buy copies for my lecturers. Reply

nehama jerusalem, israel March 5, 2010

hyper-sensory sensitivities I especially appreciate the reference to sensory issues and hope sharing this with the teachers at my son's school will help get the importance of addressing these issues through to them. most of the problems my child has in the classroom are directly related to sensory issues and their lack of sensitivity to them and knowledge about how to help. Reply

Daniela March 5, 2010

As the first comment says excellent article and appropriate for each and every child, not only those with special needs. Thanks to the author and the website. Reply

Kate Gladstone Albany, NY/USA March 4, 2010

To "Anonymous," who wrote on "The current accepted language ... " --

Did you know, "Anonymous," that more and more of us disabled people either /a/ don't care about that so-called "accepted language" (this is my position) or /b/ actively oppose that so-called "accepted language"?

To many of us, calling us "people with disabilities" sounds weird, discriminatory, and dehumanizing. (To get an idea why, imagine how it would feel to be called a "person with Judaism" if you're Jewish, or a "person with femaleness" if you're a woman, or a "person with lleft-handedness" if you're a lefty.)
For the reasoning behind this view, read the article by an autistic man (he refuses to be called "a man with autism") named Jim Sinclair -- "Why I Dislike 'Person-First 'Language." It has been reproduced on a lot of Internet sites, so just Google the article's name because this forum won't allow posting links to articles. Google the article's title and "Jim Sinclair" -- it'll come right up! Reply

Kate Gladstone Albany, NY/USA March 4, 2010

you left out one very important thing ... You left out one very important thing: Use words consistently and accurately -- avoid contradicting yourself.
To give one example of a contradiction that can confuse us -- Point Five on your list begins by telling parents not to use imperatives, but then the rest of Point Five contradicts this by telling parents to use imperatives. ("Please tinse out your paint cup and put the paper towels in the trash" uses two imperatives. "Rinse" and "put" are in the imperative mode in this sentence -- ask any grammarian!)

We who have autism or any other autism spectrum conditio are easily derailed by contradictions and carelessly used language. Ignoring that fact can make our lives at least as difficult and painful as ignoring anything else on your list. Reply

Thomas Richter phoenix March 4, 2010

Application Every child actually wants this! I remember that most of my teachers and faculty dealt with children in a very dominant way, I am the teacher, the boss, and you have no choices.

Then there was that whole movement of "everybody is winner" that took no account of singular achievement and gave us no sense of individual accomplishment.

This is a great article!! Reply

Sarah Masha W Bloomfield, MI USA March 3, 2010

The point about giving only real choices goes to all children (and adults).

Don't say, "It is time to clean up now, okay?" You don't really mean to ask a question, so just make the statement: "It is time to clean up now."
If you want to give some control or choice to the child try asking about a detail of the task: "Do you want to put away the crayons or the blocks first?" Reply

Anonymous February 18, 2010

The current accepted language used is to describe the person first, and the disorder afterwards - a child with autism, rather than describing the disorder before the person - an autistic child. Reply

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