1. What is the name of the medication? Is it known by other names? Is a generic equivalent available?
2. How do body systems absorb and eliminate the medication?
3. What do researchers know about the medication’s effectiveness in patients with autism or Asperger’s?
4. Has this medication been tested with children?
5. In what way do you expect the medication to help my particular child (not just children in general)?
6. How long does it take before we see improvement?
7. What are the common side effects? What are the less common and/or possible serious side effects?
8. Under what conditions should we immediately stop its use? Is it dangerous to stop use immediately (drug withdrawal; needs to be tapered)?
9. Is this medication addictive? Can the child abuse it?
10. What is the recommended dosage? How often will the medication be taken and at what time of day? Does “three times a day” mean around the clock or three times over the waking hours?
11. Are laboratory or other tests needed before taking the medication? Will any tests be required while using the medication? Where will the tests be administered? Will anesthesia be required?
12. Will a physician monitor my child’s response to the medication, making dosage changes if necessary? Who will assess my child’s progress and how often?
13. How long will my child need the medication? What factors will lead to a decision to stop this medication?
14. Should my child avoid any other medications or foods while taking the medication? Should he take the medication on an empty or full stomach?
15. Should my child stop participating in any particular activity while taking the medication?
16. What do we do if a problem develops? For example, what if my child becomes ill, he misses doses, or we see signs of side effects?
17. What is the cost of the medication (and its generic, if available)? Does my health insurance cover it? Is financial assistance is available?
18. Do we need to tell the school staff about this medication?
19. Where can we get written information about the medication? Where can we read objective evaluations of the medication written by sources other than the manufacturer?
20. Are there other medications for this condition? Why do you recommend this one over the others?

~ excerpted from 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s by Ellen Notbohm and Veronica Zysk (2010, Future Horizons) as adapted from “Medications and Informed Consent” by Luke Tsai. MD, Autism Asperger’s Digest, January-February 2002

Let’s tackle that last one here.

“Reach for the stars.” We start by recognizing that a metaphor dear to us may be meaningless to a child with autism. Concrete, literal thinking is a common characteristic of autism, and a concrete thinker will ask, which star do I reach for, when there are zillions? I could stretch until my arms pull from their sockets and I can’t get close. Wouldn’t I burn up if a got close to a star? If I did catch one, then what happens?

What do we really mean when we say “reach for the stars?” Most often we are urging our children to push themselves to excel. But how will it be heard by a child with autism, who likely is struggling with multiple sensory, communication and cognitive challenges? Will they take it as encouragement? Admonishment (for not trying hard enough)? Anger (for not being good enough)?

Before a child can reach for the stars, he must be grounded in self-confidence and optimism. We have to place him under a sky figuratively cloudless enough that he can see that metaphorical star, and the star must be reachable. We lay the foundation for our children’s success when we give them clear, relevant, incremental, developmentally appropriate, attainable goals, along with the tools, problem-solving strategies and emotional support to achieve them. We teach them to reach not for a metaphor, but for realistic achievements and qualities, for the best they can be. And we assure them, daily, that their best efforts will always be good enough for us, that we care more about the sincerity of their effort than about any outcome. My son didn’t even know what a valedictorian was until shortly before he became one. He had simply done his best, because that was a star high enough for him–and for us.

——

originally published at the ChildWise Institute blog, http://www.childwise.org/reaching-for-the-stars-feet-on-the-ground/

Q: I teach children who have autism, so I often wish I could get inside their heads to know what’s motivating them. Each is so individual in their likes and dislikes. The aggression towards staff and students of one boy I taught was so hard to manage, I feel like I failed him, his family and his classmates by not being able to establish a safe place for him to learn. What do you think he would have told me if he could have?

A: All humans—all creatures—need a functional means of communication. In our culture, we’ve designated speech as the gold standard of interpersonal communication. Parents of nonverbal or minimally verbal children are often consumed with the urgency of teaching their child to talk. This emphasis on “using our words” is so prevalent that when children with under-developed language skills reach out to us nonverbally, we may miss their attempts to connect. Nearly all children with autism need some form of adaptive communication. When we fail to give a child a functional, meaningful means of communication, his needs and wants go unmet and he finds a way to communicate by whatever means he can. This is what your student was telling everyone around him, loud and clear—that he was not able to express his needs and wants in the manner expected by the adults around him and had not been taught an alternate form of functional communication. He was forced to resort to the only other means he had—his behavior.

Our insistence that our children “use their words” should be only the starting point for our recognizing their efforts to communicate, because words are only a small part of all comprises interpersonal communication. We communicate through the nuance of language (sarcasm, innuendo), through the inflection, pitch and speed of our speech. We communicate through body language, facial expressions, emotional responses, postures and gestures. We communicate through proxemics, allowing some people to come near to us while keeping our distance from others, engaging in or avoiding physical contact and/or eye contact.

Most typically-developing children communicate easily using eye contact, body posture, pointing, but most kids with autism have difficulty indicating interest. They often lack the social thinking skills to know what to reference. Their motor systems can’t plan, coordinate and execute in a way that produces a spontaneous gaze or gesture. We must look farther than the child’s movements or words to be able to hear his needs, thoughts, feelings and longing to communicate.

All behavior is communication, and all behavior has a source. As adults, we often fail to seek out that root cause, perhaps assuming that the child could change this behavior if he wanted to, perhaps trying to squash the behavior without identifying the underlying reason for it. Quelling troubling behavior begins with understanding that the child is giving us information about sensory, language, social and emotional factors in his environment that are affecting his ability to cope. He is telling you that his so-called negative behavior is preventable, but only if you are willing to root out and address the cause. And we must acknowledge that our own behavior is information we impart to the child about his environment. We can’t question what his behavior is telling us without also questioning what our behavior is telling him.

Our job to break down this complex landscape of interaction into parts manageable enough to give the child with autism a meaningful and functional communication system, in whatever form it may take. When I speak at conferences, I put my audience through an exercise simulating what it might be like to lose their functional means of communication. We envision beginning our day by having our mouths taped shut and our fingers taped together. No phone, no email, no texting, no Facebook or Twitter. No functional communication as they know it. Then I ask them to imagine going about their day, their jobs, their responsibilities, confronting the expectations of those around them. They must ask themselves:

How effective would I be?

How successful would I be?
How would my co-workers or family members react?
How much could I contribute?

How long before my frustration, anxiety, anger, fear forced me to exhibit some “behavior?”
And what if it didn’t end at the end of the day?  What if this was my life?

The room always gets very quiet at that point.

Spend some time today thinking about an undesirable behavior of your own, past or present. What need did or does it fill? Have you tried to extinguish the behavior? What did you try? How well did it work? Relate this to your efforts to change an undesirable behavior in your child or student, and you’ll have the beginnings of a new and meaningful understanding of him.

***

© 2013 Ellen Notbohm www.ellennotbohm.com

Earlier posts in this series:

Autism parenting: Taming those public meltdowns. Yes, you can.

Blue-plate special for autism “picky” eaters: Respect with a side of patience, sensory exploration

“Interested in Interesting:” Helping your pre-teen with autism find friendships

Autism parenting: Quieting Your Little Screamer. Yes, you can.

I didn’t stick with the look beyond the time it took to grow out and fade out, but I enjoyed that other me for the couple of months she was around. I credit the stylist, whose casual response was just perfect:

“It’s all about whether you’re willing to see yourself a little differently.”

The hairdresser didn’t know it, but she had uttered a weighty truth about nurturing a child with autism. One of Bryce’s early classmates was a lad with little language who liked to gaze at something – a tree, a toy – then pull the corner of his eye sideways so only a slit remained. Then he would tip his head, this way, that way. Though he couldn’t say so,  he obviously wanted to see things differently. His mother joined him in it one day, then his para. Then we all did. To see the same object from many different perspectives was more interesting than we had ever imagined.

Seeing things differently doesn’t come naturally to many adults. The tourism board in my state once ran an ad campaign with the slogan, “Things look different here.” It wasn’t a resounding success because, well, some people aren’t willing to see things differently. The slogan got ridiculed into “Things smell different here” and allusions to Martian landscapes.

Years ago, our occupational therapist designed a sensory-centric special education classroom. The design, focused largely on helping the children see the world from different physical perspectives, included a loft. I wondered how the teacher would keep the kids safe, especially the ones tending toward careless behavior. But the kids found this space so attractive, they were willing to abide by a strict set of safety rules in order to be allowed to use it. Not only was the breaching of these rules almost non-existent, the loft was so inviting that it opened the door to socialization for children who previously had little interest in others. They gathered there to interact, and they were more willing to actively listen to each other and to instruction from the teacher. Things did look different there.

So much of our lives are spent in same-plane, ground level pursuits; we are almost always in contact with a floor. Our first plane ride is thrilling because everything looks so different from up there. Ditto for scuba diving, or even just opening your eyes underwater. I read of a preschool that offered students a fascinating variation on perspective—they placed a large non-breakable mirror outside during playtime. The children “walked on the sky.”

Children with autism experience the world differently. But many “typical” folk aren’t listening, too busy wishing these kids were “normal.” The prime example of this is the rigidity with which many of children with autism, mine included, adhere to their routines, food preferences, choice of activities. I learned very early on that I could be exasperated, infuriated or worn down by it, or I could see it a different way. Frequently, I was amazed to see that, truly, Bryce’s perspective was sound, and the rest of the world could benefit from doing things his way. A fondly remembered example of this is how we celebrated his birthdays. The cacophonic play zones, arcades and bowling alleys popular in his day were out of the question. We were “forced” to celebrate birthdays at home, in the backyard, and we found that virtually everyone was utterly delighted to revive this type of celebration. The adults too wanted in on the bounce house, the super-soaker fight, the tug o’ war, the popcorn in the little movie-theater bags, frosting their own cupcakes. And because Bryce had no use for conventional birthday cakes, each year was an exercise in how to do the blow-out-the candle thing differently. Ever see a watermelon with candles? A Tootsie Roll log cabin with a candle in the chimney?

Adults can begin to see autism differently by reframing the challenges our children present us. Is she standoffish—or able to entertain herself and work well independently? Is he reckless—or adventuresome and willing to try new experiences? Is she obsessively neat, or does she have outstanding organizational skills? Does he pester you with endless questions, or is he curious about his world, tenacious and persistent?

From my children I have learned a lifetime’s worth of wisdom about seeing things differently. But there will always be times when it is incumbent upon us as adults to help our children see things differently too. In the classroom with the loft, one boy  was not yet able to see his space differently. When the teacher asked the children to draw what their ideal classroom might look like, many included bikes, candy, toys, tree houses. This child drew a heavy, dark door. “Don’t open my door,” read the caption.

Clearly, our work is cut out for us. Is your door open?

© 2013 Ellen Notbohm

 My beloved grandfather came to this country from Russia in 1908 at the age of eleven, so I was very smitten by a list I came across a few years ago in a century-old microfilmed newspaper. A nine-year-old Russian immigrant, an early 20th-century English Language Learner like Grandpa, wrote “Ten Rules for Good Health.” I try to picture him with his inkwell, pen and paper, carefully considering each of the ten things before committing them to paper, as my grandfather (who became a dentist) might have. I can only smile and wish this youngster’s universal wisdom could permeate time and instill itself in his 21^st-century contemporaries, our kids. (They would also empathize with his challenges conquering the complexities of language.)

My favorite is number 10. Not only is it the only one grammatically correct, but I’m consumed with wondering and conjecturing about the unpleasant incident that prompted such urgent advice.

 
 Kansas City Times, February 1919
Ten Rules for Good Health

 The following rules for good health are advocated by a young Russian, nine years old and a fourth grade pupil, under the stimulus of the lesson in personal hygiene. The rules, unrevised, are:

1. Weare kleen klothes

2. When you eat eat slow and grush the food before you swolo it.

3. One should take baths and change inerwair often.

4. Sleep with your windows open and not your mouth, it gives you bad breath.

5. Dont eat untill you feel stuffed.

6. Take a bath evry so ofn.

7. Wash your teeth befor and after breakfus.

8. When you go to sleep aways take of your stockings.

9. Kleend you finger nailes good.

10. Look at your food before you eat it.

——

For further reading, 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, Chapter Four, Daily Living, covers haircuts, shampooing, tooth brushing, nail trimming, eating adaptations, adaptive clothing, encouraging independent self-care and more. Explore the 300-item Table of Contents.

——

I’m at work on an historical novel based on a branch of my ancestry, and one of my more heart-rending discoveries has been that of a family decimated by Huntington’s disease, a horrid affliction that close to 100% inherited. Huntington’s disease often eventually robs its victims of motor control and speech, and can lead to frightful psychosis. I cannot describe to you how deeply I feel, across more than half a century of time, this family’s panic and despair, watching one family member after another fall victim to a villainous illness at a time when treatments were minimal.

Meanwhile over at Thomas Edison High School, Bryce is writing a paper about autism for his health class.  Specific questions must be answered. The first is: what is the cause? Because it’s a short paper, Bryce gives a short answer: we don’t know what causes autism. There are many different ways to have autism, and the cause is likely many different things.

Bryce is right; we don’t have a definitive, across-the-board answer. We each form our opinions according to what information makes sense to us, each in our own situation. But until we know a lot more than we know now, what makes sense is to pursue all logical possibilities.

One of the avenues worth pursuing is that hereditary link, so painfully demonstrated in my family with Huntington’s disease. This is where my devotion to the field of autism and my equally potent love of family history and genealogical sleuthing join forces. Many illnesses and disorders run in families. Discovering these patterns can profoundly influence the course of research, identification of risk factors, preventative measures and treatments.

The Surgeon General’s Office of the US Department of Health and Human Services has developed a tool to help you track, organize and share with your health providers this important information. My Family Health Portrait is an Internet program compatible with any current web browser, and is available in English, Spanish, Portuguese and Italian. It’s free and downloadable to your own computer.

I used My Family Heath Portrait to set up my own family health information. It’s easy to use and sets up good visuals, both in spreadsheet form and in family-tree style chart form. Seeing this kind of information presented visually is powerful. I had thought I knew most everything about my immediate family’s health, but the chart revealed a startling number of red flags where I had indicated “I don’t know.”

 My Family Heath portrait is available at https://familyhistory.hhs.gov/

Yellow—the color of jaundice, danger signs, cowardice and lemons.

Yellow is a two-faced hue. It can signify hope, happiness and cheer. Or it can signal decay, neglect and weakness.

The term yellow journalism was coined in the 1890s to describe news stories that employ salacious headlines, exaggeration, scandal- and fear-mongering to sell more newspapers.   It’s still alive and robust in newspapers today, and its newest victims are our kids with autism. Lest this kind of press muscle aside legitimate reporting, to our lengthy list of duties as autism parents and advocates we now must add media watch.

On a spring morning last year, yellow was the color of a school bus that set the scene for a sensationalistic story that put a child with autism on trial in the court of uninformed public opinion. “Autistic Child Bites Driver” ran the headline. The headline of itself was relatively factual—a child with autism bit a school bus driver.  A factual telling of the incident might have gone something like this: a child with no prior history of aggressive behavior bit a school bus driver. The driver was treated for bites and scratches at a local hospital and released in good condition. The child had autism, and parents and school personnel were examining all possible factors that might have triggered the behavior, including sensory, communication, emotional or biomedical issues.

Nice factual account, except that it wasn’t reported that way, and after “good condition,” it didn’t happen that way. From the very first sentence, blinding yellow journalism saturated the profoundly one-sided telling of the story.

The paper chose the deliberately incendiary characterization of the facts as a “bloody assault” and an “attack” on an adult who “suffered” injuries—thereby condemning a child without exhibiting any curiosity or investigation of what might have prompted his unprecedented  behavior.

This is what happens when adults assume what they don’t actually know. Look at the bumper crop of unfounded assumptions in this reporting:

• that the child’s behavior was malicious and pre-meditated
• that the behavior had no understandable, justifiable, logical or preventable trigger
• that the child had other self-regulation skills he should have employed
• that the child consciously chose a behavior knowing that it was “bad”

In any situation, an assumption made without factual backup is no better than a guess.

To assume that the child’s behavior was willful and malicious inflicts a level of adult intent of which the child is almost certainly not capable. It demonstrates a profound lack of understanding of how autism can affect a child’s thinking and behavior. And it bypasses one of  autism’s most pervasive characteristics: impaired ability to communicate. A child’s behavior is often the communication tactic of last resort when they have not been able to make their needs known through so-called appropriate channels, and such behavior always has a trigger, usually in sensory or emotional overload. To ignore the importance of identifying and addressing the root cause of the behavior is to denounce the fact that the brain with autism processes language and social thinking differently. The article skipped over these facts and proceeded directly to reporting that “school district guidelines call for students who commit a first instance of assault to face consequences ranging from parental involvement to suspension or expulsion.”  Such discussion of disciplinary actions and consequences is grossly premature and misguided until vital questions about the antecedent of the behavior have been answered and self-management strategies calmly and patiently taught to the child, in a problem-solving rather than punitive manner, over time.

Nowhere in the piece did the reader get a single word, or even hint that

• the adults responsible were looking for a trigger as anything other than a means to calibrate consequences
• upon identifying the trigger, they would take steps to prevent its recurrence and would work to teach the child self-regulation skills he can use should the trigger occur again.
• adult behavior might have played a role in the child’s behavior, whether or not intentionally.

Dozens of questions leapt to my mind: what did the bus driver do (or not do) preceding the incident? What happened in the child’s home that morning? Was there a blip in the routine, food, expectations for the day? A new medication, or normal medication skipped? Bus running late, new driver, different route, child assigned to a different seat? Did the other child on the bus trigger the behavior, perhaps unintentionally—perhaps not? Did the child with autism attempt to communicate what was troubling him; did he even have a functional, meaningful means of communication?

I can just hear the reprimands from that uninformed jury of public opinion—don’t go blaming others! The child must learn to take responsibility for his behavior!

It isn’t “blaming” others to insist on establishing facts, the cause in cause-and-effect. In adult court, considerable weight is given to determining motive. A child deserves no less. Exhibiting no curiosity about the source of the behavior, leaping directly to consequence and punishment, is in a word, unjust.

My letter of protest to the newspaper urged the reportorial staff to read my book or any other literature that would give them a baseline understanding of what our children with autism live with. “Without it,” I wrote, “you will probably continue to write articles like this one, vilifying a child without questioning the role of our own adult assumptions, responsibilities and behavior, and making the already difficult life of a child with autism yet harder.” I received no response. Shall I assume  (in the absence of facts) that my message fell on deaf ears, or that some editor maliciously and intentionally squashed it? Don’t know. The optimist in me hopes there was some silent shame for victimizing a child and some self-reflection, that perhaps I fed even one mind food for thought that might mean that the next story gets written differently, promoting understanding rather than retribution.

To paraphrase Edmund Burke, all yellow journalism needs to thrive is for people of good conscience to remain silent. I speak now up as a lifelong lover of newspapers. My morning routine isn’t right without one. I believe that the First Amendment fosters more good than bad. But it requires the vigilance and the voice of all of us to remain so.

The Cat’s Pajamas: Demystifying idioms for concrete thinkers

One fine day I sat in the boardroom listening to a firebrand project manager describe the timeline and strategy for the next customer acquisition campaign. Only days earlier she had told me she was sick to death of enduring meetings with men who couldn’t string together two sentences without spouting sports idioms. “The ball’s in their court,” she mimicked, “and they need to get behind the eight-ball,  either go wide or punt! It had better be a grand slam, or we’re on the ropes!”

And while she ran a tight, serious meeting, I had trouble stifling chuckles. True to form, she did not use one sports idiom. But she did say that a certain coworker was in the doghouse. The campaign was supposed to have an element of surprise timing, but this coworker had carelessly let the cat out of the bag to a competitor. Ms Manager got the information straight from the horse’s mouth and was madder than a wet hen. The coworker had used up one of his nine lives, because just this once she was going to let the sleeping dogs lie. But she would be watching him like a hawk from now on.

She really had a bee in her bonnet.

Did you notice that the previous six sentences contained eight animal idioms or metaphors? Idioms and metaphors are so ubiquitous in our language that we rarely pause to wonder how on earth we ever came up with something as bizarre as “looking a gift horse in the mouth.”  We toss around animal idioms in our everyday language like bulls in a china shop, without ever pausing to consider that they have the power to terrify our concrete-thinking children with autism. Ever tell your child that he has ants in his pants, or that you have butterflies in your stomach or a frog in your throat? You didn’t really put a bug in Aunt Kate’s ear, did you? Or open up a can of worms? Nor did you hit a bull’s eye (or take said bull by the horns), grab a tiger by the tail, beat a dead horse, bark up the wrong tree, or have a cow. . .

Read the full feature.

Q: My son is four, and we have bad days that leave me in tears. It’s so hard when I don’t understand what he’s trying to communicate. Screaming (I compare it to a car alarm) is his primary form of communication: screaming at me if I choose the wrong color of silverware for him or the wrong chair to sit in at dinner. If he’s not screaming, he’s repeating the same phrase over and over. At school they use the green-yellow-red bus system; if you are bad, you move your bus to yellow, then red. Now when he is frustrated with me for our lack of communication, he screams that I should move my bus to yellow. I am thankful he has words but so frustrated with the screaming, and so unsure how to help him. Please help.

A: My heart goes out to both of you. I try to put myself in your son’s little shoes and imagine the helpless feeling of having inadequate functional communication skills, little control over even the smallest details of his life, and overwhelming expectations from adults but few tools to meet those expectations. Fortunately, all these things can be addressed in positive manner. A speech therapist versed in autism would be a great ally at this time; s/he could help your son and you develop acceptable means and forms of communication that will go a long way in taming his frustration. Words are only a part of how we communicate; your son may benefit from using visual forms of communication while he is learning to “use his words.” Visual supports can anchor him in times of both stress and calm. I recommend reading the work of Linda Hodgdon, widely considered a guru for visual strategies for children with autism. Her website is http://lindahodgdon.com/.

While he is developing functional communication, consider the many daily opportunities for giving him some power and control over his own life. For instance, if he’s “screaming at me for the wrong color of silverware that I choose for him,” let him choose his own color of silverware, or chair. This is not pandering or giving in to him, it’s helping him develop decision-making skills, self-confidence, trust in you, and ultimately independence.

I’m also concerned about a behavior system that tells a child he is “bad.” Children aren’t “bad,” and negative behaviors are more effectively addressed by problem-solving and skill-building than by a punitive approach. Help your son understand why his negative behavior happened, what he can do to avoid it, and how he should handle it if it happens again. It might also help to track the praise ratio at school and at home. Does he get more attention from adults for his negative behavior than he does for positive ones? Does he hear more criticism than praise? A 4:1 praise-criticism ratio is widely advocated by educators and psychologists. The screaming will decrease when he feels heard (whether through words, pictures, music, art, technology), validated and empowered.

It will help him immensely if, at a time when he is calm, you and he can agree on family guidelines, rules, expectations for how you treat each other, holding all family members to the same standards of behavior. Concurrent with teaching self-regulation skills, you will want to begin to teach perspective-taking skills as well — how his angry outbursts make you feel disrespected and sad, and that you will not allow family members to speak to each other this way. I used to put myself in time out when my young son was at his angriest. Making myself unavailable was part of teaching him that he would have to find a more appropriate way to communicate his feelings.

I hope you’ll also investigate sensory calming techniques. For instance, deep pressure input (as Temple Grandin discovered about herself) worked wonders for my son, and there are numerous creative ideas for doing it, for children of all ages.

Earlier posts in this series:

Autism parenting: Taming those public meltdowns. Yes, you can.

Blue-plate special for autism “picky” eaters: Respect with a side of patience, sensory exploration

“Interested in Interesting:” Helping your pre-teen with autism find friendships