More about Acceptance

There are many aspects of acceptance that relate to dealing with an autistic child. The major one’s are 1) accepting what you cannot control, and 2) recognizing and acknowledging your feelings.  Recently a mother of an autistic child said to me, “I have accepted that he will never be cured, he will never go to college, he will never be married and so I don’t cry anymore because I know what he will never have or what he will never be.”  As a mom, and as a therapist, this statement struck me as an example of acceptance as a defense mechanism, not as a reality.  It may be a true statement, ultimately, that this child will in fact never experience these life situations.  But to decide never to have a certain feeling again limits intimacy between oneself and the family.  It can also limit choices and decisions about experiences that could aide in the growth potential of a child.  In a sense, the kind of acceptance that masks normal feelings of sadness or loss can work against the issue of living a fuller life, because it closes more doors than it opens.  The kind of acceptance that helps families live a more expanded, inclusive life with their child is the kind that understands that feelings cannot be “decided upon and controlled”, but rather they just exist and if you acknowledge and accept them, they will not control or influence your decisions about how to live and structure your child’s and families life.

Particular Settings That Present Challenges

Many families avoid restaurants, airports/other forms of travel and department stores.

The more crowded and “rule driven” an environment, the more challenging is the management of the situation.  To assist in developing a successful plan for managing your child in different situations, it is essential to:

• Know what your child’s motor and sensory issues are and be prepared with a plan to deal with them should they spontaneously become problematic

• Be aware of what your child’s current physical and emotional state is before you engage in a public situation

• Understand the goal of the social outing, and its value and importance to your child and your family.

• Be familiar with the rules, boundaries and risks of the social setting.

The Role of Sensory Issues in Social Settings

A lack of knowledge in this area results in chaotic experiences that discourage going out in public and encourage isolation.  When a child loses control in public, it can be extremely stressful and embarrassing.  Having a current, professionally done sensory profile on your child is an essential part of helping you be prepared to deal with problems of physical and emotional disregulation.  It can also help you prepare the appropriate equipment and supplies that will help your child cope with social fears, over stimulation, boredom or confusion.  Many parents of older children, in particular, make the mistake of thinking that the child can cope better just because they are older.  They may rely more on reasoning with the child when they become upset, instead of attending to their sensory issues, (which will help with calming and regulation and will also increase their ability to cognitively process what you are trying to explain to them). Making sure they are not hungry, thirsty or too tired for the outing are crucial areas to monitor.  Common items and actions that help many autistic children who have difficulty processing their thoughts, feelings and sensations in social situations are:

• Sensory toys for busying their hands
• Musical devices such as ipods or cd  players
• Visuals, such as pictures of home or where they might be going next
• Verbal support to help them breathe and relax
• Asking them what they think they need right now
• Pressure or some form of touching to connect them to their body
• Trying to making them laugh
• Giving them a rote task to distract them from their actions or feelings

It is important to know what the child’s processing strengths aren in order to determine what strategy has the best chance of being understood and therefore helpful.

Tips for dealing with restaurants

• Bring food for the child so he won’t become aggressive or irritable due to hunger
• Bring new or favorite toys to keep them busy
• Start out with short stays in restaurants to build their tolerance and security
• Choose a place that is not a high risk, sensory challenge for your child
• Engage them in ordering food, or engaging in some kind of social interaction with the waiter or other people
• Teach the names of items and people in the environment
• Sit them in between people who know them well and are prepared to tend to their needs
• Be open to leaving if the situation is upsetting and just not working

(The challenge is not to give up on restaurants and restrict your families enjoyment or opportunites, but rather to learn from the situation and commit to trying again).

Airports:

• If your child has anxiety in airports, consult his/her doctor for possible medications to aid in anxiety management or sleep.

• In advance of your trip, play with airplane toys or read books about traveling by air

• Drive by the airport without stopping and prepare them visually for the trip

(Desensitization process)

• Arrange for pre-boarding privileges with the airlines to reduce dealing with crowded situations

• Try sitting in the back of the plane when you first start traveling.  This allows for easier access to bathrooms and more limited contacted with the general public. (Until you know what your child’s behavior is like on a plane, having less contact with others lessens your stress and creates more time to focus on the child).

• Bring music players, DVD players with new and familiar music and movies

• Bring new and familiar toys and activities to play with

• Have food and water ready at all times

• Have a change of clothes available at all times.

Many of these suggestions apply to movie theaters, sporting events, department stores and other social settings.  The concept is to know your child’s needs, to understand what their developmental level of functioning is (especially cognitive and emotional) and to be prepared as much as you can be to deal with difficult behaviors in public settings.  However, the reality is that all the best suggestions in the world can fail, and you have to be prepared to leave the situation, make the best of it, or accept it and cope with your own emotions as constructively as you can.  It is important to remind yourself, (especially when having a difficult or disappointing experience), that being out in public, living life to the fullest is a victory in and of itself.  It is saying to autism, “We will find a way, our unique way, to be out in the world just like any other family.”  After all, what better environment is there for a child with autism than one creates a life filled with contact with people, establishes opportunities to overcome self limiting behaviors through experience, and exposes one to life’s diverse and exciting adventures.

© Rebecca Sperber, MFT

Home life is, by my definition, life that is supposed to be lived at home.

Arguing over homework is a far cry from living and, in my opinion,

a non-productive and very negative use of mental energy.

Arguing is never fun for a child (no matter that their actions might indicate otherwise). Arguing is a learned “sport”—by participating we are actually condoning this behavior and sending a mixed and confusing message to our children. Are we doing it on purpose? Of course not! Do we need to learn other methods? Sometimes on a daily basis!

As adults, when a known situation makes us feel bad we have learned to avoid this situation. Because children do not have the maturity to express their feelings as well as we (usually) do, they will often act out their feelings in the only way(s) they know how.

When we lose control, it’s pretty easy for children to learn how to take control of the situation—when they do not have the mental or emotional ability to understand how to do the right thing. When this happens they are being set up for failure—in schools where teachers expect children to teach themselves and in homes where parents expect children to learn without guidance.

Can Homework Really Make Children Sick?

They might act or say that they feel sick—could it be stress?

(Try to put yourself in their shoes.) If they know they are going to fail

(no matter what they do or don’t do)—they really are sick!

I say they “can’t win” because many of our children are pushed at school to learn something that often doesn’t interest them—in a manner that makes them feel inadequate.

The battle continues when we, as parents, try to do the “right” thing and continue the process by forcing the issue all over again at night. We begin in a calm and helpful manner, hoping for the “submissive” desired results—where our child will do exactly what we ask them to do, in exactly the correct and timely manner. (Who are we kidding . . .?)

When we do not get the desired results some of us resort to counting, setting the timer, removing privileges, repeating our “commands” over and over (each time with more insistence in our voice) . . . until we have all lost our patience—with each other!

Who Wins at This Game?

It’s up to each one of us to contribute what we can to the world.

What worth does a diamond have if it is buried beneath a stone?

Just like our children, it must be polished and exposed to the world.

When we all end up in tears because of the pushing and counting and yelling, has anyone learned or won anything? We have all lost— especially our children!

The worst part is, of course, we have set an expected behavior pattern for our children to continue. Children often behave in manners that they have learned by repetition. When this nightly homework scenario is repeated more than fifty percent of the time it has become a memorized behavior pattern . . . think about it.

Is Homework Logical?

Is it logical to repeatedly review material that they already know?

Does it help children to spend hours trying to force them to learn

that which they have little or no interest in?

Yes and No.

Yes, sometimes it is logical to review material they “know”—to insure that their understanding and knowledge isn’t just something they’ve learned to repeat “by rote.”

No, sometimes it is not logical—when the child cannot relate to or grasp the meaning of the information being presented. Somebody please tell me why our children are required to learn alternative learn math terms (median, mean, mode and range numbers) that they will most likely never need to know or use. Even my brother, who is very dependent on knowing these types of calculations for his work, has never used any of the three terms.

Because I had now idea on how to help my son with his homework and he had no clear understanding of the terms we resorted to the computer.  Median (the number at which half the values in a sample fall above and half fall below); mean (an alternative word for average); mode (the most frequently occurring value or number in a group) and range (the difference between the greatest and the smallest value). In the particular exercise that my son brought home the greatest number was 23. The smallest number was 11.

By my way of thinking, the range should have been 12 (23 – 11 = 12).  Wrong . . . 12 was not an option. I honestly did not and still do not know what the right answer is, unfortunately. It was not the first time and it probably will not be the last time I questioned the manner in which math is being taught to our children these days. Makes me feel old-fashioned (or is it just old?).

Doesn’t anyone teach math in the good ‘ol fashioned (dare I say “logical and understandable”) way anymore? When the parents have to resort to a computer to decipher wording that no one uses or understands I have to question the validity. This kind of teaching is, in my opinion, like trying to take flying lessons in Chinese (unless you happen to be fluent in Chinese). When the child feels defeated from the start and the feeling continues at home, there is no motivation for him or her to put forth the extra effort.

Who’s Really Responsible?

For many years I thought it was my responsibility

to ensure that my son completed every bit of his homework!

Correctly and on time, of course…

On many nights this meant that dinner became whatever I could put on the table the quickest! Thankfully, I prepare gluten-free/casein-free meals in large quantities and freeze them. Warming up something that is precooked eliminates a great amount of stress.

Now, if my only obligation for the evening was to help Tanner with his nightly homework our evening would run fairly smoothly. But, like most mothers, I have a family beyond Tanner to care for. (Sometimes I think this is a huge shock to him). Preparing dinner for my husband and younger son Oliver (as well as occasionally feeding myself—when time allows!) is a nightly event. I really do enjoy cooking; therefore I don’t usually view this as a “job.”

Oliver, of course, comes home with his share of homework and his need for attention, too.  In addition to all of the regular household responsibilities I also have the pleasure of taking care of one cat, one dog, one leopard gecko and a tank full of tropical fish!

In order to be fair to everyone it is absolutely crucial that no one person or thing receives all of the time or attention. (Yes, I know—most children on the spectrum have no concept of this notion—bear with me on this one . . .).

Rewards or Bribery?

Rewarding a child for doing a good deed and for good behavior

promotes their self-worth and encourages more of the same.

Bribing a child to do that which should be expected of them is

encouraging them to become the one in “control.”

There are times when either method could be considered “correct.”

• We have “Tanner-time” and “Ollie-time”—where I have play-dates with only one child at a time. Each boy has his own specific interests so our play-dates have become quite varied. My husband is a huge help with this and the events are almost always successful. These are eventful times and great “rewards” (or is it bribery?) for completing homework assignments.
• We take walks in the middle of homework time—fresh air can do us all wonders.
• Reading a book (or reading for at least fifteen minutes) is another great break that reactivates our brains and reduces our stress levels.
• Cooking together is an activity we usually enjoy together. I will let the boys come up with something they want to cook and we find or create a recipe. One of our best adventures was making home-made pop-tarts. We created a gluten-free/casein-free recipe for Tanner. The adventure was captured with my camera and shared under Photos on my Facebook site: Facebook.com/RhondaSpellman.
• Making a craft is also another way to rejuvenate a child’s energy level. They can make something out of practically nothing. I save toilet paper rolls, interesting shaped containers and magazines. Oliver receives My Big Backyard – an annual gift from Andy’s mother—the boys’ grandmother Cecily. Tanner’s annual gift is Ranger Rick. For our family she also sends the National Geographic. With the three magazines we have unlimited craft ideas. A few of ours:
  • Animals on a stick (cut out animals and glue them to craft sticks). We have creates plays with our new “friends.” A couch or table on it’s side works well for a stage.
  • Collages—cut out the subject matter of choice—glue onto a piece of cardboard, wood or even an old mirror.
  • Cut out interesting pictures (like a big gorilla); glue your own face (from really small photos) on top (over the face or on the belly). Add a firm backing—like poster board or cardboard (old cereal boxes are great)—and you’re almost done with a great Christmas tree ornament or gift! These can turn out so funny that I have a box of small photos of the boys saved up for the occasion.

Next, you’ll want to poke a small hole in the top and insert a loop of yarn or string (we tie it in a knot and glue the knot to the back).

Finally—add a coat of spray gloss (about $3.00 at Hobby Lobby) and you’ve created a craft in less than an hour! The best part—the memory you created with your child will be remembered every time they see their face shining back on the craft they made. We usually make several at a time—keeping some and sharing some.

When Everything Else Failed—I Finally QUIT!

This is NOT a misprint… after years of pushing and shoving

(in a manner of speaking) to convince my son that his homework

was his responsibility I finally realized that I was

saying one thing—but doing another!

I was telling Tanner, night after night, that his homework was not my responsibility—yet, there I was… putting everything and everyone else “on hold” so that Tanner would complete his work—to my standards. I couldn’t bear the thought of seeing him fail. It broke my heart to think that we might be “wasting our time” with school if he wasn’t learning everything presented to him. I knew he had the intelligence and the ability—so why was it such a battle for him to simply do what he was more than able to do…?

The Million dollar Question with an Answer is Coming Right Up…

My mother Virgie is my best friend and my life-long mentor. She is always the first one I call when I am staring at a problem that has no clear answer in sight. She has this incredible ability to help me to see clearly when I’m at my wit’s end. It is a gift I hope to be able to share with my boys when they reach that point in their lives.

So, at my wit’s end (once again) I called my mother and explained the problem: Tanner still refuses to do much of his work at school. He says he “already knows the work.” The teachers have all but quit pushing him and almost all work comes home—for me to deal with. Then, for good measure, I added, “IF I wanted to home-school him full-time I wouldn’t have enrolled him in school!”

“What Would Happen if You Let Him Fail?”

My mother asked. I couldn’t believe my ears! Was she serious? Let my darling son with the incredible brain and abilities… fail? I couldn’t bear the thought. What on earth did she expect me to do—quit helping my son? Surely my mom with all the right answers didn’t really ask what I thought she asked . . .

My mother had worked with the special education department for many years and had great success with many children who were looked upon as “unteachable.” I trusted her explicitly and, since I was fresh out of ideas, I asked her to explain this crazy notion of hers.

“Rhonda,” she said, “As long as you are spending every evening walking Tanner through his homework, there is no reason for him to work any harder at doing it himself. He has figured out that if he refuses to do his work at school it will get sent home and you will help him. All of your attention will be focused on him. Sounds like a winning situation to me.”

Well . . . when it was presented to me like that—I had to accept the fact that I had, indeed, allowed him to manipulate the system. In fact, I had probably even encouraged him to do so by continuously dropping everything else—just to help him. Poor Oliver would receive about twenty minutes of one-on-one assistance and he would finish his homework. Tanner would then monopolize the rest of my evening, and often my entire morning before school the next day. At the end of the evening I was often too worn out to even think straight.

I hadn’t realized how I had helped to create a bad situation until it was so bad that I needed help to fix it. As long as Tanner was getting his work completed on time, there was no reason for the school to step in or step up. I was essentially home-schooling in the evening and Tanner was playing during school time. No one was winning.

Transfer of Ownership: Let the Fun Begin!

We only had five weeks of school left to try

and implement a change but, I was armed with a new outlook!

This is what I explained to Tanner on our first “day”:

• Starting today, you will be responsible for your homework, not me.
• I will help you, like always, but, only for the exact same amount of time as Oliver—no more and no less.
• There will be no arguing, no scribbling on the pages and no lying on the floor during homework time. If this happens, it will be obvious to me that you are tired and you will need to lay down for one-half hour.
• For every successful day that you do your best, you will earn a star on your star chart—convertible into one dollar that you can spend on a game, book or toy.
• I will not check over your homework, unless you need my help—completing your homework and doing it right is up to you.
• I will not push you to get everything done—the way you manage your time is up to you. Your playtime is earned and it’s easy to earn it. Finish your work and then we can play.

At first Tanner resisted the change but not with the strength that I expected. I think he rather liked the more relaxed approach of me not hovering over his shoulders. Of course, he wasn’t applying a lot of energy to completing his homework, either. I had a great talk with his teachers and told them what to expect—letting them know that I would no longer be “homeschooling” every night.

If I wanted him to become more responsible then I was going to have to stick to making him more responsible. Gradually, during the remainder of the school year, he became more independent in some areas of homework. There wasn’t enough time to know if this system was going to be a real winner by the end of the year so I continued with a variety of writing projects throughout the summer.

One of his comments when we were writing a book about a hiking trip was, “I didn’t know this was going to be this much fun, mom.”  The outline for our book can be found on my website. Feel free to copy it, customized it and use it. My website address is: AutismWithRhonda.com.

When I witnessed how subtle changes could inspire my son it made me wonder about our educational system. Don’t they know that children learn more when they’re enjoying it? I know that I can clearly remember those teachers who made learning fun and those who enabled their classroom to become more of a chaotic playground where learning was far from my mind.

Our summer went wonderfully and he started fourth grade with great hopes. I am still in amazement (nearly two months later) that he is completely unmodified and doing his homework! I’m happier, he’s happier and, best of all, he is truly learning how to be more responsible!

I believe in the law of attraction: we attract into our lives whatever we think about most. If we focus on the toxins of the world, we’ll probably be sick. If we focus on a healthier world, I believe that we will probably be healthier. It will take personal change to move forward. Our children are depending on us to make a difference.

For now, I believe that we can help ourselves the most by doing our homework, researching as much as possible and assisting the doctors we love and trust—whenever possible. We are better able to help our children when we trust, respect and work with the doctors and professionals who have had years of training.

Thankfully, the world is beginning to see, recognize and even understand that Autism is real and really growing at an alarming rate. As we continue to work together and learn from each other, we can help tomorrow’s children—and, hopefully, we can help many of those children today!

The universe is filled with wonderful people—some God blessed with Autism. The rest of us (soon to become the minority I think) have been entrusted to learn from them. I am committed to learning as much as possible—how about you?

© Rhonda Spellman

]]> http://www.autismathomeseries.com/library/2009/11/homework-and-the-transfer-of-ownership/feed/ 0 http://www.autismathomeseries.com/library/2009/11/twelve-tips-for-setting-up-an-autism-classroom/ http://www.autismathomeseries.com/library/2009/11/twelve-tips-for-setting-up-an-autism-classroom/#comments Thu, 05 Nov 2009 22:33:09 +0000 Jene Aviram http://www.autismathomeseries.com/library/?p=1403

Standing before your students’ expectant faces, you’re determined to create a successful classroom.   You will!  These twelve tips are here to guide you.  To be truly effective, never lose sight of the secret ingredient.  Your students must know you accept them for who they are.  They must feel your belief in them.  By believing they can do it, you will expect a lot from them and you will get it.  In the process and quite unexpectedly, you will receive a surprise bonus.  Your students will adore you and look forward to learning in your class every day.

1. Keep it structured

Children with autism thrive in a structured environment.  Establish a routine and keep it as consistent as possible.  In a world that’s ever changing, routine and structure provide great comfort to a child on the autism spectrum.  Define routines clearly.  For example, every morning:

-          Enter the classroom

-          Greet the teacher

-          Greet the friend next to you

-          Unpack your school bag

-          Put notes in the red tray

-          Put lunch bags in the blue tray

-          Sit at your desk

Activities are successful when they’re broken into small steps.  If children are creating a craft such as a paper airplane, define when it’s time to cut, draw and paste.  Make sure children know what to do if they finish ahead of time.  Typically, children with autism do not use free time productively; therefore strive to have as little downtime between activities as possible.

2. Use visuals

A picture speaks a thousand words!  Use them whenever you can.  Children with autism learn faster and with greater ease when you use visuals.  In fact, we all respond better to visuals.  Look at any page of advertisements and see which ones catch your eye.  When verbal instructions require too much concentration, children will tune you out.  Visual supports maintain a child’s focus and interest.  So what can you use visuals with?  Just about anything.  Are you teaching hygiene?  Show pictures of children brushing their teeth or combing their hair.   Are you teaching greeting skills?  Show pictures of children greeting their friends, bus driver, parents and teachers.   Are you explaining an outing like a field trip?  Show visuals of what to expect on the trip such as getting on the bus, arriving at the destination, planned activities, eating a snack and returning to school.  Remember to keep explanations simple and short about each picture or concentration will wane.   Give written instructions instead of verbal whenever you can.  Highlight or underline any text for emphasis.

3. Schedules

People with autism like order and detail.  They feel in control and secure when they know what to expect.  Schedules help students know what’s ahead.  Picture schedules are even more powerful because they help a student visualize the actions.  Schedules can be broad or detailed.  You can use them with any sequence of events.  These examples will give you an indication of how they can be used.

Classroom on Tuesday is an example of a broad schedule since it takes a whole day to complete

Picture of “Unpacking school bag”

Picture of “Writing in a journal”

Picture of “Floor time”

Picture of “Snack”

Picture of “Music class”

Picture of “Math”

Picture of “Lunch”

Picture of “Playing at recess”

Picture of “Science experiment”

Picture of “Reading a book”

Picture of “Geography”

Picture of “Packing school bag”

Picture of “Saying goodbye”

Make sure you have this schedule in a very visible place in your classroom and direct the students’ attention to it frequently, particularly a few minutes before you begin the next activity.

The end of a school day is a more detailed schedule as it explains a short activity

Picture of “A clock depicting the end of day”

Picture of “Retrieving a school bag from its location”

Picture of “Placing a homework book in the backpack”

Picture of “Placing a folder in the backpack”

Picture of “Putting on a coat”

Picture of “Saying good-bye to friends”

Picture of “Saying good-bye to the teacher”

Picture of “Getting on the school bus”

Make sure this schedule is available and draw attention to it before the activity begins.  Another option is to create schedule strips and place it on each student’s desk.

Written schedules are very effective for good readers.  These can also be typed up and placed on a student’s desk.  The child can “check off” each item as it’s completed, which is often very motivating for a student.

4. Reduce distractions

Many people with autism find it difficult to filter out background noise and visual information.  Children with autism pay attention to detail.  Wall charts and posters can be very distracting.   While you or I would stop “seeing the posters” after a while, children on the spectrum will not.  Each time they look at it will be like the very first time and it will be impossible for them to ignore it.  Try and seat children away from windows and doors.  Use storage bins and closets for packing away toys and books.  Remember the old adage – out of sight, out of mind.  Noise and smells can be very disturbing to people with autism.  Keep the door closed if possible.  If your classroom is in a high traffic area – time to speak to the Principal!

5. Use concrete language

Always keep your language simple and concrete.   Get your point across in as few words as possible.  Typically, it’s far more effective to say “Pens down, close your journal and line up to go outside” than “It looks so nice outside.  Let’s do our science lesson now.  As soon as you’ve finished your writing, close your books and line up at the door.  We’re going to study plants outdoors today”.   If you ask a question or give an instruction and are greeted with a blank stare, reword your sentence.  Asking a student what you just said helps clarify that you’ve been understood.  Avoid using sarcasm.  If a student accidentally knocks all your papers on the floor and you say “Great!” you will be taken literally and this action might be repeated on a regular basis.  Avoid using idioms.  “Put your thinking caps on”, “Open your ears” and “Zipper your lips” will leave a student completely mystified and wondering how to do that.  Give very clear choices and try not to leave choices open ended.  You’re bound to get a better result by asking “Do you want to read or draw?” than by asking “What do you want to do now?”

6. It’s not personal

Children with autism are not rude.  They simply don’t understand social rules or how they’re supposed to behave.   It can feel insulting when you excitedly give a gift or eagerly try and share information and you get little to no response.   Turn these incidents into learning experiences.  As an example, if you enthusiastically greet a child with autism and you get the cold shoulder, create a “Greeting Lesson”.  Take two index cards.  Draw a stick figure saying “Hi” on the first card.  On the second card draw a stick figure smiling and waving.  Show each card to the child as you say. “When somebody says Hi, you can either say “Hi” or you can smile and wave.  Which one do you want to do?”  When the child picks a card, say “Great, let’s practice.  “Hi Jordan”.  Show the card to prompt the child to respond according to the card he picked.  Praise the child highly after a response and have your cards ready for the next morning greeting!  Keep it consistent by asking the parents to follow through with this activity at home.  If you get frustrated (and we all have our days) always remember the golden rule.  NEVER, ever, speak about a child on the autism spectrum as if they weren’t present.  While it might look like the student isn’t listening or doesn’t understand, this is probably not the case.  People with autism often have acute hearing.  They can be absorbed in a book on the other side of the room and despite the noise level in the class, they will easily be able to tune into what you are saying.  Despite the lack of reaction they sometimes present, hearing you speak about them in a negative way will crush their self esteem.

7. Transitions

Children on the autism spectrum feel secure when things are constant.  Changing an activity provides a fear of the unknown.  This elevates stress which produces anxiety.  While a typical child easily moves from sitting in a circle on the floor to their desk, it can be a very big deal to a child on the spectrum.  Reduce the stress of transitions by giving ample warning.  Some ways you can do this is by verbal instruction example “In 5 minutes, it’s time to return to our desks” and then again “Three minutes until we return to our desks” and then again “One more minute till we return to our desks”.  Another option is to use a timer.  Explain that when the timer goes off, it’s time to start a new activity.  Periodically, let students know approximately how much time is left.   When you ask a child to transition from a preferred activity, they might be very resistant if they have no idea when they will be allowed to resume.  If a student loves reading, you could say “In 5 minutes it’s time to do science.  Then it’s math and then you can read again”. This way, the child knows that it’s OK to stop because the activity can be resumed again soon.  If a child is particularly struggling with a transition, it often helps to allow them to hold onto a “transitional object” such as a preferred small toy or an object of their choice.  This helps a child feel in control and gives them something to look forward to.  As an example you can say “In 3 minutes we’re going to pick a toy and then we’re going down the hall to music class”.  Using schedules helps with transitions too as students have time to “psyche themselves up” for the changes ahead.

8. Establish independence

Teaching students with autism how to be independent is vital to their well being.  While it’s tempting to help someone that’s struggling to close a zipper, it’s a much greater service to calmly teach that person how to do it themselves.  People can be slow when they are learning a new skill until they become proficient.  Time is usually something we don’t have to spare, particularly in western societies.  However in order to help a person progress we must make time to show them the ropes.  While it’s wonderful that your students take direction from you, it’s equally important they learn to respond to peers.  If a student asks for a scissor, tell him to ask his peer.  Encourage your students to ask each other for help and information.  By doing so, students learn there are many people they can seek out for help and companionship.  Making decisions is equally important and this begins by teaching students to make a choice.  Offer two choices.  Once students can easily decide between two options introduce a third choice.  This method will help children think of various options and make decisions.  People with autism may take extra time to process verbal instructions.  When giving a directive or asking a question, make sure you allow for extra processing time before offering guidance.  Self help skills are essential to learn.  Some of these include navigating the school halls, putting on outerwear, asking for assistance and accounting for personal belongings. Fade all prompts as soon as you can.  Remember that written prompts are usually easier to fade than verbal prompts.  Fading prompts can be done in a phased approach.  If you are prompting a child to greet someone by showing them an index card with the word “Hello”, try fading it to a blank index card as a reminder before you completely remove the prompt.   Never underestimate the power of consistency.  Nothing works in a day whether it’s a diet, an exercise plan or learning to behave in class.  Often we implement solutions and if there are no results within a few days we throw our hands up in the air and say “This doesn’t work.  Let me try something else”.  Avoid this temptation and make sure you allow ample time before you abandon an idea.  Remember that consistency is a key component of success.  If you’re teaching a student to control aggression, the same plan should be implemented in all settings, at school and at home.

9. Positive reinforcement

We all love being rewarded and people with autism are no different.  Rewards and positive reinforcement are a wonderful way to increase desired behavior.  Help students clearly understand which behaviors and actions lead to rewards.   If possible, let your students pick their own reward so they can anticipate receiving it.  There are many reward systems which include negative responses and typically, these do not work as well.  An example of this type of reward system is where a student will begin with a blank sheet of paper.  For each good behavior the student will receive a smiley face. However if the student performs poorly, he will receive a sad face or have a smiley face taken away.  It’s far better to just stop providing rewards than it is to take them away.   Focusing on negative aspects can often lead to poor results and a de-motivated student.  When used correctly, rewards are very powerful and irresistible.  Think of all the actions you do to receive rewards such as your salary, a good body and close relationships.  There are many wonderful ideas for reward systems.  Ten tokens might equal a big prize.  Collecting pennies until you have enough to “buy” the reward of your choice.  Choice objects to play with after a student does a great job.  Rewards don’t have to be big.  They do have to be something a student desires and show students they have done a great job.  Every reward should be showered in praise.  Even though people on the spectrum might not respond typically when praised, they enjoy it just as much as you!

10. Teach with lists

Teaching with lists can be used in two ways.  One is by setting expectations and the other is by ordering information.  Let’s discuss the first method.  Teaching with lists sets clear expectations.  It defines a beginning, middle and an end.  If I ask you to pay attention because we’re going to do Calculus, you probably wouldn’t jump for joy and might even protest.  However, you’re likely to be a more willing participant if I explain that there are only 5 calculus sums.  I demonstrate this by writing 1 through 5 on the blackboard.  As we complete each sum, I check it off on the board, visually and verbally letting you know how many are left till completion.  The second method of teaching with lists is by ordering information.  People on the autism spectrum respond well to order and lists are no exception.  Almost anything can be taught in a list format.  If a student is struggling with reading comprehension, recreate the passage in list format.  This presentation is much easier for a student to process.  Answering questions about the passage in this format will be easier.  Similarly, if you’re teaching categories, define clear columns and list the items in each category.  While typical people often think in very abstract format, people on the spectrum have a very organized way of thought.  Finding ways to work within these parameters can escalate the learning curve.

11. Creative teaching

It helps to be creative when you’re teaching students with autism.  People on the spectrum think out of the box and if you do too, you will get great results.  Throw all your old tactics out of the window and get a new perspective.  Often, people with autism have very specific interests.  Use these interests as motivators.  If you’re teaching reading comprehension and students are bored with a story about Miss Mavis, make up your own story about dinosaurs, baseball statistics or any other topic your students enjoy.  Act things out as often as you can.  If you’re teaching good behavior, flick your pencil on the floor as you ask your students “Is it OK to do this?”  Raise your hand as if to ask a question while you ask “Is it OK to do this?”   Another great strategy to use is called “Teaching with questions”.  This method keeps students involved, focused and ensures understanding.  As an example you might say:

Teacher: Plants need sun.  What do they need?

Class: Sun

Teacher: That’s right.  They also need air and water.  What do plants need?

Class: Air and water.

Teacher:  That’s right and what else?

Class:  Sun

Teacher:  Correct.  Plants have stems and leaves.  What do they have?

Class:  Stems and leaves.

Teacher:  And what do they need?

Class: Air and water

Teacher:  And what else?

Class: Sun

Teacher:  That’s right…

Another great way of teaching is by adding humor to your lessons.  We all respond to humor.  If you’re at a conference, think about how a lecturer holds your attention when he makes jokes.  It’s OK to be silly in class.  You will have your students’ attention and they will love learning with you.  The saying goes that people on the autism spectrum march to the beat of their own drum.  Therefore, they often respond to unconventional methods of teaching.  While it might take some imagination and prep time, watching them succeed is definitely well worth the effort.

12. Don’t sweat the small stuff

The final goal is for children to be happy and to function as independently as possible.  Always keep this in mind and pick your battles wisely.  Don’t demand eye contact if a student has trouble processing visual and auditory information simultaneously.  People with autism often have poor attending skills but excellent attendance.  Does it really matter if a student does one page of homework instead of two?  What about if a student is more comfortable sitting on his knees than flat on the floor?  It’s just as important to teach appropriate behavior as it is self esteem.  By correcting every action a person does, you’re sending a message that they’re not good enough the way they are.  When making a decision about what to correct, always ask yourself first, “Will correcting this action help this person lead a productive and happy life?”

Last month I was talking to a group of writers at our annual writer’s college, http://www.CIPABooks.com. My program title was called “Get a Grip on Your Lip! The Art of Selling Yourself First so that you Sell Your Books Second!” My goals and focus weren’t primarily on selling books, despite the title. My message was focused on “selling” your story – positively and with your voice (as apposed to someone else’s).

Hearing or reading someone’s book about Autism when they don’t understand what they’re talking about caused me great grief in the early years. We’ve all been there… expecting a profound message only to read “all children will…” or “every person with Autism…” There just is no such thing! No person, with or without Autism, should ever be put into a box – especially by someone who hasn’t “been there” and I found myself hurt and offended when I read or heard those words.

I didn’t know how I was going to help my son when I first set out but I knew one thing: keeping silent about our struggles wasn’t going to help him! In the last seven years I’ve attended, spoken or volunteered, in person or online, over 400 seminars, talks and programs to learn more about Autism. I have learned something from every single one. At a few of them I learned that (my opinion at the time) the person or group didn’t have a clue. Did that make them wrong? Not necessarily. I believe they were at least trying to help.

Was it a missed opportunity? Maybe. But, no that I’m (hopefully) wiser, I have to ask, how many times have I missed an opportunity to help someone because I didn’t want to ‘intrude’ or because I didn’t want to risk offending someone? Could it be that a few of the speakers I originally “wrote off” were actually speaking to a group (perhaps in seats behind my own) that needed to hear exactly the very message that I found lacking?

When it comes to real life messages we all owe it to each other to use our voices to reach out to those whose lives we can positively change, even during those times when we’d rather wait until just the “right moment.”

When I first began to share the information that I had learned, the games I had created and my recipes a few of my friends questioned me and pondered whether I was “exposing” my son. During some of those times I wanted to remain silent but I wondered if that was really the message I needed to be sharing? He has come so far that it’s hard to recognize his diagnosis these days. How could I not share such a positive story?

The opportunity to share how my son has developed into a charming young man and how he changed my mission in life has become an even greater opportunity to help others. Writing children’s stories will always be something I will do; writing stories with children developed because of my son. Writing to inspire others will always be something I will do; writing about a life changing experience developed because of his Autism.

So many times people will write or talk about an event or a story but if it isn’t your story it doesn’t carry nearly as much weight as one that has changed your life. Sharing those moments should not be limited to an event that happens once a year or even for an entire month. These moments that I call Autism Awareness Moments should be purposeful, positive and passionate. How can we expect our children to grow if we aren’t providing the elements they need on a regular basis?

When my son first began to act differently I had no reference map and no idea where to go to find one. When his conditions became worse I reached out in every direction that I could see. I never knew about an Autism Awareness month back in 2001. If there was one I missed it, just like I missed many of the red flags that I tried to dismiss as ‘a faze.’

Now, a full seven years later, my son regularly teaches me new things about love, life and discovery. I’m learning more about the solar system than I ever learned in all of my years in school. For example, I never knew so much about Jupiter and the possibility of life there.

“Life could exist under the surface,” my son told me one day, “because water comes to the surface of Jupiter and water contains oxygen. Plus, it’s warm in the center so even plants could grow!” “So, see, mom,” he continued, “Everything that aliens would need is right there. I’ll probably discover what they look like when I’m a grown up.”

It is sometimes hard to fathom how rapidly his mind computes. These days he is trying to decide if he will discover new planets, new animals or “just make movies about them…” – at nine! I don’t look for moments where I can see him shine as often these days because he has grown to the point where he attracts light wherever he goes.

When did it happen? How did his silent years turn into profound moments of cosmic truth? Back when he was learning to talk again in a “regular” language I found myself so frustrated when he seemed to refuse to try because I just knew he could do it. Now I understand that not only was he trying he was fully computing what I said and what I didn’t say. He understood more than just my words; he understood my actions and my unspoken words, too. I was the one who needed to learn about transition times and processing times.

Helping him to grow ultimately helped me even more than I could have hoped for. My knowledge about health and nutrition came from years of research that I would probably never had done because most likely I wouldn’t have seen the need. I’ve been healthy my whole life just being minimally “aware.”

Witnessing the ups and downs with Autism and living through 14 months of PANDAS has been harder in some ways than I thought I was capable of withstanding. Sometimes the only way to survive was to appreciate the moments… those moments when he says, “I love you, mommy” and those moments when he draws a picture that has a striking resemblance to an alien one might see on Jupiter with the words “my mom” underneath.

Autism isn’t about certain month or day or even a year when we learn or grow or celebrate. Today, more than ever, I am learning to appreciate Autism Awareness Moments because Autism isn’t something my son HAS… Autism is something that defines who he IS and, believe me, he’s pretty amazing.

In considering the ubiquitous proclamation for no complaining, I thought about the state of autism affairs, and contrasted my governor’s position with a documentary about parents of children with autism I watched about a year ago. In it, a group of parents are interviewed for their perspectives on raising a child with autism and the impact it’s had on their lives. To be blunt, the film’s a real downer. The majority of the parents devote their airtime to venting, lamenting, and, yes, complaining about the terrible toll autism’s taken on them, the hardships they endure, and the financial or social sacrifices they’ve made. Perhaps the documentary’s intent is to highlight families’ struggles such that funding for services will be increased, not cut (after all the squeaky wheel gets the grease); but, honestly, their message lacks grace, humility, and acceptance—especially in the moments they are disparaging their parental roles in front of their own children.

I encounter this too—the “why me” syndrome—in certain people who refuse to see the glass as half-full. For many parents, it is only natural that, following a child’s autism diagnosis, there is a period of regret and mourning a vision lost. But to persist in this mindset, such that it permeates one’s everyday life, is not only unhealthy, it’s destructive. It’s unhealthy because of the constant, internal ricochet for second guessing one’s parenting skills and choices; it’s destructive because the negativity of continual complaining will erode the relationship those parents have with their own children.

Everything matters. Every word, every gesture, every interaction matters in how our children with autism are perceived and received by others, beginning with a tone parents set. I recall being quite saddened to hear an elderly parent, who is also a prominent autism advocate, publicly refer to his adult son with autism as an asshole. This speaks volumes about the nature of their unachieved relationship, the quality of which will likely always lack reverence and respect. In another instance, I was at a conference responding to an audience member’s question. In attempting to discern individuals that might serve as local resources to the questioning mom, I asked for a show of hands from those who could help her. And yet, as I was leaving, the same parent ran up to me complaining that she hadn’t connected with any of those who volunteered their assistance.

Most recently, during a break in a presentation, I counseled another mom about some pressing issues involving her son. I instructed her on the steps to take to correct a potentially harmful situation. When she approached me a second time, I reiterated the same information. As I was leaving, she, again, approached me and I gave her the same instructions but advised that I needed to leave, inviting her to follow up by email. She did just that, informing me that she was devastated that I “walked out” on her.

At some point, for parents such as these, the complaining needs to cease in favor of acceptance for one’s lot in life—to represent one’s child authentically. Autism already bears the pall of gloom and doom perpetuated by those who seek to pathologize it unreasonably. Parents, kindly reclaim your children with autism, and embrace your role as parents (not just “special needs” parents) with all the dignity and resourcefulness you can imbue this responsibility. It will make the difference between projecting a draining and debilitating “why me?” attitude instead of one that proudly reflects “well, why not me?” The parent of whom I just spoke was clear in telling me she was scared for her son. My reply? Then choose not to be a victim.

• Emotional isolation from oneself and others

• The loss of life experiences that are essential for personal growth

• Emotional problems such as depression, loss of self esteem and anger

For many people, especially in the early stages of the diagnosis, isolating brings about a sense of “control” over the difficult aspects of dealing with autism. It becomes a way of avoiding the emotions, questions and judgments that can result from being involved in a social context with others who may not understand or be sympathetic to autistic behaviors in children. Families can begin to anticipate negative, embarrassing or disappointing situations and decide that avoiding friends and family gatherings is the best choice to make for their family.

Another factor in deciding to go the isolation route is the issue of fatigue. Intensive schedules of treatment and schooling can take its toll and parents can begin to look at socializing as a pressure, not a pleasure. The family can convince itself that it does not fit into social situations because of the unpredictability of their child’s moods or behaviors.

Isolation can become “normal” to a family that thinks and feels this way. The issue of fatigue must be addressed and a process of relief must be found in order to avoid physical and mental health issues from resulting.

Stage I of the Isolation Syndrome: Isolation within the Family

The pattern of isolation often begins in the home within the family unit. Concerns occur about burdening each other with difficult emotions and issues. Doubt about whether feelings will be understood or accepted when expressed can cause a reduction in communication and emotional connection between members of the family. Emotional suppression is normal on an occasional basis but becomes detrimental to the individual and the family if it becomes the prevalent pattern. Emotional suppression can also result in denial about the realities of the autism, and can eventually affect how the family makes decisions about medical treatment, education, and socialization for the child. An overall belief that people will not understand or be able to tolerate the expression of your frustrations and fears will cause interpersonal withdrawal and weaken the strength of the family as a unit.

Breaking Through Stage 1 of the Isolation Syndrome:

Talking about sadness, fear and anger is a crucial component of breaking down the walls of emotional isolation in a family dealing with autism. Most family members have similar feelings going on, and by not expressing them, they miss out on getting the support, insight and help they desperately need. Instead, they either over-communicate about the mechanical or logistical aspects of dealing with the autism, or go in the opposite direction and talk only about superficial matters. Without emotional communication with each other, families become depressed, irritable and alienated. This atmosphere is emotionally and physically damaging to everyone, and the capacity to help the autistic child develop and grow is significantly diminished.

Methods for breaking through these distancing patterns are:

• Scheduling a weekly family meeting with the agenda to share feelings and thoughts

• Creating time to engage in mutually enjoyable activities together

• Writing each other notes, emails or texts to keep updated on feelings and issues

• Being physically affectionate

• Being verbally supportive without judgment or advice-giving

The family meeting is a time to express and examine questions and feelings that have occurred during the past week. Common questions that help deepen emotional intimacy are: “Did anything happen that caused you to cry or get angry this week? “How has Johnny’s autism, his schedule or any incident that has occurred impact your week?” The idea is to ask questions that help each other open up honestly about emotions. There should be a rule during family meetings that there will be no judging of each other, but rather the giving of emotional acceptance and support and the sharing of ideas and strategies that might help each other. The goal is to build trust, strengthen connections and establish an ongoing process of better communication. It has been proven that families become less depressed, less overwhelmed and less unhappy if they can vent and problem solve amongst themselves on a regular basis. This increase of family intimacy increases the incidence of venturing out into broader social situations.

Stage II of the Isolation Syndrome: Physical Isolation

One aspect of physical isolation the reduction or ceasing of physical contact within the family. Family members will stop hugging, touching and kissing because of their depression and overwhelm, which only deepens their feelings of isolation. This reduction of physical contact in the family discourages further socialization outside the family, where the chance for physical contact is increased.

Due to the emotional shutdown that can occur in families dealing with autism, physical contact can be seen as a threat to the” control” being exerted over experiencing uncomfortable feelings. It is true, that when we physically connect with people, it stirs emotion. Part of the hidden agenda of the isolation syndrome is to not feel, so “to avoid touch” can become a self protecting mechanism. Another major downside to reduced physical is that it limits the kind of normal physical interactions that we want our child with autism to learn. It is possible that, in an unconscious way, families believe that in order to “join” in their child’s world; they have to cut themselves off from each other and social contact outside the family in order to be fully available to the child. This is faulty thinking that leads to poor modeling and the loss of normal attachments between people.

Dealing with Social Discomfort

Feeling “different and self conscious” are common feelings for families of children on the autism spectrum. The differentness of their child can create feelings in the family of also being “different” from other people and therefore not fitting in or being welcome. This line of thinking results in families thinking about where they “can go” or “should go” instead of where they “want to go.” After the diagnosis of autism occurs, (along with the presentation of challenging behaviors in the child), families often stop or significantly limit doing the things they used to do that were a source of enjoyment and social contact. This isolation becomes the solution to coping with potential stress or embarrassment in social situations. The short term relief and comfort yielded from this decision to isolate soon fades and is replaced with a profound sense of loss.

Concerns about what others will say or think about your child are common. A self consciousness about how you will be perceived as a parent can also become an obstacle to more social engagement. An innate instinct to protect the child from social rejection or ridicule can fuel the belief that isolation is the best solution. However, the impetus to having more social confidence is the building of skills and strategies to better handle difficult social situations. It is also important for the family to connect to their “entitlement” to move around in the world freely and to have the experiences that they want for themselves. Developing communication skills to deal with the public helps decrease social fears and social avoidance.

Such skills include:

• Explain the situation regarding your child that respects your privacy

• Politely request that people not get involved in whatever might be happening with your child.

• If you or your child are being mistreated, find a direct way to express your anger and set your boundaries.

• Make apologies when appropriate

There are many people out in the public who are rude, intolerant and uniformed about how autistic children sometimes behave. Learning how to ignore them or disengage from them with assertive confrontation is a better alternative then the decision to isolate your family and miss out on having normal, fulfilling experiences. Also, remember that the majority of the public will be able to tell there is something different about your child by observing their behavior, and will look on with compassion and respect as you and your child navigate the often difficult maze of social situations.

The Difference Between Isolation and Common Sense Boundaries

It is understandable that some situations are not appropriate at times for an autistic child. Due to sensory issues, behavior problems and mood instability, it is sometimes not appropriate to persist in trying to manage a difficult situation. However, I strongly discourage families from making rigid rules of “never” doing certain activities because of fear or discomfort. What I do encourage is to develop a flexible attitude that says, “We will try this again another time”, or even “Let’s try to figure out another way that we can adapt to or manage the activity.” In other words, be prepared with coping tools for both you and your child when being out in public becomes difficult. Having certain foods or toys can help comfort the child and redirect anxieties or problem behaviors. However, it is also important to know when to “pull the plug” on the day, and relieve everyone’s stress and go home or choose an alternative way to spend your day. The healthiest attitude in such a situation is to accept reality, but to believe that 1) you are learning how to better deal with challenging situations, 2) that your child “will” continue to evolve and adapt, and 3) that you will continue to be able to venture out in the world and live life in an expansive, not restricted way.

Next month, I will discuss particular social situations and the specific skills and strategies that create positive outcomes from those experiences.

Just about every week, however, a coarse, straight, black hair springs forth from that mole. We shave it right away but it throws me off. I tear up. I simply cannot help but think of Chris, in his forties, oblivious to that curious, single hair. I don’t want my son to become “that guy”. The one that is picked on, made fun of and is the brunt of the neighbor’s jokes. I can’t stand to think of him hurt, he knows only kindness and unconditional love. I want to hold him and save him from the world. I want to live forever. I want to help him get dressed, reveal the complexities of friendship to him, provide protection and warmth and yes, trim that nagging, black hair. I don’t want him to be “that guy” in high school who is tormented and bullied. I want them to understand, that this is my son, my beautiful boy with loving heart and generous soul.

Maybe there is a lesson to be learned here. I cannot keep Chris my little boy, forever. I must recognize and respect his independence, abilities and strengths. I have to guide and teach even if I don’t feel so important and needed anymore. I must teach Chris to take care of that long, black hair.

We are going to K Mart or “Big K” as Chris calls it. We need to pick up a few things. We need to buy an electric razor. Maybe there is a lesson to be learned here, for both of us.

If you like this article, you’ll love Bill’s audio seminar!

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A LETTER TO MY TEACHER – FIFTEEN THINGS ABOUT ME

Hi, my name is _________________________________and I am in your class this year. I want you to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. Please don’t judge me on my first few weeks. As the time goes by, you will be amazed by the skills you never thought I possessed. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you. I did. In fact I usually hear more than most people. As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!

1. What is my general disposition?

__________________________________

__________________________________

2. What am I really, really good at?

_________________________________________

__________________________________________

3. What do I absolutely LOVE doing?

__________________________________________

__________________________________________

4. What do I absolutely HATE doing?

__________________________________________

__________________________________________

5. What academics are my strong areas?

__________________________________________

__________________________________________

6. What academics do I need a lot of extra help with?

________________________________________________________

________________________________________________________

7. Which skills would my parents really like me to work on this year?

________________________________________________________

________________________________________________________

8. How do you know when I’m getting frustrated?

________________________________________________________

________________________________________________________

9. What can you do to calm me down before the storm hits?

________________________________________________________

________________________________________________________

10. Too late! The storm hit! What can you do to calm me down?

________________________________________________________

________________________________________________________

11. What strategies work really well to get me to do something I don’t

want to do?

________________________________________________________

________________________________________________________

12. What typically makes me laugh?

________________________________________________________

13. What consequences back-fire and don’t give the desired results?

________________________________________________________

________________________________________________________

14. I don’t like consequences, but which consequences work well for

me?

________________________________________________________

________________________________________________________

15. I would also like you to know…

________________________________________________________

________________________________________________________

PLEASE read the following article so that you can see just how important you are to me.

TEACHER APPROVAL

Think back to when you were 6, 8 or 10 years old. Do you remember your teacher? Do you remember how you looked up to her? Her words were golden. Do you remember when you forgot to do your homework or weren’t paying attention? Her stern words cut you to the core. Not because she was mean but because you desperately wanted her approval.

School ended and those days were long forgotten. Then my child was diagnosed with autism. Why didn’t anyone warn me I’d become that 8 year old again? I desperately need teacher approval, not for me, but for my child.

This is a common sentiment of parents to children with autism. So if you’re a teacher, Autism consultant, SLP, ABA therapist, OT, PT, Psychologist, Social worker, Camp Counselor or anyone else that’s an authority figure to a child with autism –

THIS IS FOR YOU!

My child has autism. I know that. I’m not in denial. How could I be? I live it every day. I have other children. My friends have children. I know the difference. They answer questions, my child might not. They play together, my child might not. They share their thoughts, my child might not.

My child is different. He is on his own mission. I’m happy to be by his side. I am thrilled when he learns something new, no matter how small. I am proud when he accomplishes something I once never thought possible. I take delight in his idiosyncrasies. Please rejoice with me. Please notice his worth.

My child is multifaceted. He has weaknesses and strengths. He has deficits and skills. People are always pointing out the deficits. Please join me in noticing his skills.

Teachers. In our meetings, please allow for some time to recognize my child’s good points. When you do, I go home walking on air. When you don’t, I drive home in tears.

SLP’s, OT’s and PT’s. When your opening statement is a positive remark about my child, I begin to relax. When you only voice concerns, my stomach twists into knots.

ABA therapists & Camp counselors. When you greet me by telling me my son had a great day, my anxiety fades. When you focus on the deficits, your words hurt me deeply all day.

Consultants, Psychologists and Social Workers. When you begin with positive observations, my heart soars in delight. When you only stress your concerns, my heart splits in two.

My child faces judgment at every turn. I invite you to stand apart! Stand strong with us! Unique is good! Let’s tell the world! Help me instill pride in my son. Show him his greatness. Try and see his perspective. Praise him as much as you can. By doing so, you improve my child’s life and build his confidence. You will motivate and inspire him. He will exceed your expectations and I will be eternally grateful to you.

Goal setting processes need to include incremental steps that can be understood by the child.  Over-focusing on the achievement of the goal can overshadow the importance of what is learned by the child in the steps leading towards goal achievement.  The steps should be 1) visually clear, 2) at the appropriate cognitive level, and 3) within the current physical and emotional profile of the child.  The mastery of the steps that lead towards goal fulfillment increases self-esteem and competence, which are essential components of becoming an initiating, more independent person.

Obstacles to Developing Independence in Children with Autism

The difficulty in developing self perpetuating skills of independence for autistic children can be explained by understanding how the core deficits of the disorder affect all necessary capacities to be independent.  The developmental areas most affected by autism are 1) language and communication, 2) social functioning, and 3) cognitive functioning.  These reduced capacities limit or nullify the child’s ability to tell others what they want or need, inhibit feelings of empathy towards others, and limit independent problem solving skills.  Those limits, in turn, affect the child’s ability to develop a plan that leads to action.  It is important, therefore, for teachers, therapists and parents to develop processes or systems that take the child’s deficit areas into consideration when setting goals for independent functioning.  For example, if the goal for a child who has motor planning and sequencing problems is to be able to sit down at their desk and independently take out the appropriate supplies to start a task, the process should include incremental steps that lead to independence such as:

• Using a series of pictures which show the child doing each step of the task
• have the child watch  another child model the action,
• have the child read  directions about what to do from a cue card,
• have the child take out one item at a time and build up to more steps
• Have the child name the items he or she needs,
• have the child point to each item (with or without language)
• Use signing to guide actions

Any of the above steps begin to shape the behavior toward initiative and independence because they take into consideration physical, cognitive sensory and language strengths or weaknesses. Rewarding the child with positive reinforcement for each step they are able to master encourages repetition of the action and more unprompted, spontaneous behavior.

The Role of Language Acquisition

Have you ever noticed how talking affects your behavior?  Think about a time when you found yourself taking action after telling someone how you felt about a situation.  For example, sometimes after we express hurt, we may decide to leave a situation or ask a person for an apology.  These independent, assertive actions are motivated by the words we express, as if those words were a map showing us what to do in certain circumstances.  When we use words to clarify what we want or feel, we feel more empowered to take action.  In that sense language is “self-prompting” in that it serves as a catalyst for independent action.  We are driven to take initiative as a way of getting understood or having our needs met.

Goal plans developed for children with autism must include speech goals that teach assertive language as well as “self talk”.  The ability to turn words into communication to ourselves also strengthens our ability to figure out what to do, or what to say further to others. Self talk becomes the precursor to expressive language and speech therapists should include “self directing and self reflective” self-talk goals in the treatment plan.  For example, when a child wants to ask another child to share something with them, that child would be more inclined to ask if they had thoughts such as:

• “Johnny is a nice boy.”
• “I will ask in a nice way.”
• “I will offer to share something with him.”
• “I will promise not to break it.”

These self-assertions lessen anxiety, which in turn promotes less resistance to taking a verbal or physical action.  For a child in the same situation with more limited cognitive and language abilities, the steps towards developing more independent communication and behavior might include:

• Pointing to the desired item and saying, “please’;
• Having an adult verbally or physically model the request;
• Teaching the child to say “Let’s share”;
• Enjoying the desired item in joint play and saying “Thank you.”
• Writing the request on paper or having the child write the request

The more words or other forms of communication a child has the ability to use, the easier it will be for them to take the initiative towards getting what they want or need.  Once that child begins to see that their words, signs or writings have an effect on getting what they want or need, he or she will become more motivated to use language for communication with others, and as a result will become more behaviorally assertive.

The Role of Social Functioning

When we are part of a group, we become motivated to act in ways that will gain the attention and acceptance of others in the group.  Children with mild deficits will tend to take more initiative independently because they will be more aware of his/her own feelings and social needs, such as being liked and accepted.  A child with some social intelligence will figure out that certain actions make people laugh or happy, and therefore, will be more likely to repeat those actions on his/her own in order to promote those responses from others.  To encourage additional independent social behavior, these children should be helped to expand on their repertoire of social behavior and communication to develop more interesting and deeper connections to peers.

Children functioning at a lower level of cognitive and social awareness require additional supports to increase independence in social situations.  Many of the social behaviors need to be modeled and paired with explanations appropriate to the child’s level of understanding.  For example, when you model saying “hello” for a child and pair it with a wave of the hand, you also explain to them that it is a friendly thing to do, and it makes people feel good and notice them.  Pairing the action with the explanation increase the odds of a child adopting the behavior because taking action with their body and using language can increase the level of intention and involvement in the action.. This approach has been shown to awaken responsiveness in many children with autism, especially those who are having low affect or are hypotonic”.

In order to promote interactions in group settings, it is helpful to set up scenarios where children depend on each other for completion of a task.  For example, if one child has an item that another child needs to complete a task, there is an increased chance the one child will offer the item to the other, or the other child will request the item.  Social settings are opportunities to promote independence because children can be taught they can help the group or complete the group in some meaningful way, simply because of an action they take.

The Role of Cognitive Development

One way in which cognitive functioning is measured is by the level of behavioral and emotional understanding shown in a situation.  When a child understands the concept of what is happening, and understands his or her own feelings and the feelings of others, that child is more apt to take constructive, meaningful action.  Without this clarity and accuracy of thought, children often shy away from taking the risks which go along with taking action.  Autistic children with significant cognitive deficits 1) often lack the ability to know how to figure out what to do in a situation (problem solving deficits), 2) cannot project and anticipate what might happen next, 3) have difficulty developing alternate plans of action, and  4) have problems understanding their own feelings and the feelings of others.

The lack of independent action is directly related to not understanding a given situation, and what is expected of him or her in that situation.  For example, if a child is accustomed to their teacher starting out the day by saying, “Let’s get your materials out of your desks,” he or she might be confused if a substitute teacher starts out the morning by saying, “Let’s get started.”  That confusion will lead to inaction because it is not clear what is being asked of them to do.  Using visual supports, gestures, and pairing words with actions are tools which are often necessary for a child to really understand what he or she is supposed to do.

All programs aimed at developing cognition should include strategies that teach 1) how to use the child’s processing strengths to increase general comprehension and social intelligence, 2) problem solving skills to apply when something does not work out as planned, and 3) social learning skills that build confidence and competence in social settings.  When a child is taught a process for developing thoughts about what is happening in his or her environment, they become more able to figure out appropriate actions to take.  Therefore, with more clarity and confidence, he or she becomes more independent. Examples of strategies which help develop such cognitive growth by challenging rote, rigid thinking are:

• disrupting a pattern in the child’s life so that he or she is required to think about what to do differently;
• hiding needed items in strange and new places;
• making a familiar sequence of behaviors  more complicated; and
• creating opportunities for all of these strategies to occur in new situations, in different places, and with different people.

Once autistic children learn that they have to think differently across multiple circumstances, cognitive growth is promoted.

Independent, initiating behavior is possible for children with autism.  However, to achieve that goal it is necessary to build interventions with an understanding of the individual child’s deficits and strengths in the major domains of language, social and cognitive functioning.   Autism programs should emphasize building cognitive skills with well-defined strategies which encourage and support social learning and independent behavior.  To do that requires patience, creativity, knowledge and flexibility by all who work with and live with these special children.

© Rebecca Sperber, MFT

Over the next seven years I helped him to talk again and to write his first stories. He helped me to see what Autism really looks like. On the front flap of my new book I wrote the following descriptions. As you read them, I think that you might view Autism in a different way.

What Does Autism REALLY Look Like?

Honest by nature.

It’s just not logical to lie.

Memories like an elephant.

Intense focusing abilities contribute.

Accept others unconditionally.

Fashion and fame: unimpressive.

Clear understanding of ‘live for the moment.’

Gratification comes quickly.

Egos are not worn on their sleeve.

Functional and logical: the answer.

Often dedicated to unique passions.

It’s interesting to them—any more questions?

Profound visionaries—it comes naturally.

Your agenda could impede their progress.

Not afraid to play alone.

Game rules: a personal interpretation.

Acuity and keenness that very few understand.

Colors around them aren’t seen—they’re felt.

Won’t mess up your day—at least not deliberately.

Hidden agendas are a considered a waste of time.

Insightful perspective on life.

“People should be more like animals. That way,

when they’re having a bad day, they could just

hide behind their tails.”  From Tanner, age five.

Honest by nature—people with Autism don’t typically waste their time embellishing the truth because there is no point. It isn’t logical to lie. Although they may see things differently, the picture they are describing is reality to them. When ‘outsiders’ are allowed in to their world of imagination, the experience is often a magical one.

Memories like an elephant—good or bad, their experiences are never forgotten. Sights and sounds leave a lasting impression. Lessons learned—if learned in a logical way—aren’t soon forgotten. Learning to understand the neuro-typical way of thinking is often illogical and confusing and learning strange rules can take time.

Accept others unconditionally—how it is that children with Autism are always able to see beyond cosmetic and personality challenges? They have an intrinsic ability to accept people unconditionally. Dedicated love is often clearly demonstrated by people with Autism, downs syndrome and many other diagnosed conditions.

Clear understanding of ‘live for the moment’—if you’ve ever seen a child with Autism who was just given a ticket to ride a merry-go-round or offered an ice cream cone you have surly witnessed pure, unadulterated bliss. They don’t sit around and wait for ‘just the right moment’ because they enjoy every moment as it comes along.

Egos are not worn on their sleeve—so what if they didn’t run the fastest or win a blue ribbon? They had fun and fun was the main focus. Receiving accolades for a job well done isn’t always necessary. They know they did their best and that is what counts. What other people think about them or their performance doesn’t have that much merit to them anyway.

Often dedicated to unique passions—if airplanes are their true passion you can bet that they will learn enough to give a dissertation about them. No matter what their passion is—it is very real to them and nothing can sway their minds from this dedication. The best route, in my opinion, is to help them to become an expert in their field or fields.

Profound visionaries—it comes naturally, like Albert Einstein and countless others who were able to see beyond the average person’s limited scope. Visionaries are responsible for seeing and later developing electricity, airplanes, trains, transportation and running water. Without visionaries our world would not progress to the level it has and certainly not at the pace we enjoy.

Not afraid to play alone—a child with Autism isn’t dependent on a social structure in order to enjoy playtime. A child with Autism is often perfectly happy to play completely alone—sometimes even when his or her best friend is nearby! Like-minded friends are often attracted to each other and seem to enjoy the reduced pressure to behave in an expected fashion.

Acuity and keenness that very few understand—most people have the identified set of senses: site, smell, touch, taste and hearing. I believe that people with Autism have an adding sense: the ability to ‘feel’ color. Only a person who has this ability is able to fully describe it. I completely believe this feat to be true, however and describe their keenness to the statement, “Catch the wind.” Of course, anyone knows that you can’t catch the wind; on one can even see the wind. But, like a person with Autism being able to feel colors, I can feel the strength of the wind.

Won’t mess up your day—at least not deliberately—it isn’t commonly the goal of a person with Autism to disrupt a classroom or a sermon at church. They say and do what comes to mind with very little thought or concern for others. They don’t mean to be self-centered; it’s just a part of their inherent nature.

Insightful perspective on life­—When my son said, “People should be more like animals. That way, when they’re having a bad day, they could just hide behind their tails,” at five years old it was considered cute at the moment. The more that I’ve thought about it over the years, the more meaning his words of advice have taken on.

As an adult I tend to fall into the trap of feeling that everything has to run according to plan and or something catastrophic will happen . . . what that something is almost never materializes but it doesn’t stop the worry and the stress. It inhibits the ability to live for the moment and severely impedes creativity.

As the mother of a child with Autism I have been given an opportunity to feel colors, catch the wind and understand how it would be to have a tail—albeit, these possibilities are viewed through another’s eyes and only the glimpses are shared with me.

What does Autism REALLY look like? Autism REALLY looks like a lost child—somewhere in between understanding nothing yet seeing everything.

Autism REALLY looks like a successful adult—understanding everything yet seeing nothing.

By learning to understand a person with Autism we learn to understand ourselves. When we learn to see colors like a person with Autism can the entire world will be a brighter place—REALLY.