I receive many emails each week, most of which are legitimate requests for help or sources of valuable information. Many others are “spam,” which I delete in spite of their urging me to “click here” or “forward to everyone you know.”

One unexpected email seemed like an appropriate “Social Incite” to pass along to all of you. It is a humorous look at our English language (or at least our American English). As we consider the language and communication differences of people with autism spectrum disorders, this piece illustrates the challenges that we present to people who tend to interpret things literally!

The title of this piece is simply “UP,” and it was forwarded from a group called Agathon:

This two-letter word in English has more meanings than any other two-letter word, and that word is 'UP.' It is listed in the dictionary as an [adv], [prep], [adj], [n] or [v].

It's easy to understand UP, meaning toward the sky or at the top of the list, but when we awaken in the morning, why do we wake UP?

At a meeting, why does a topic come UP? Why do we speak UP, and why are the officers UP for election and why is it UP to the secretary to write UP a report? We call UP our friends, brighten UP a room, polish UP the silver, warm UP the leftovers and clean UP the kitchen. We lock UP the house and fix UP the old car.

At other times, this little word has real special meaning. People stir UP trouble, line UP for tickets, work UP an appetite and think UP excuses.

To be dressed is one thing but to be dressed UP is special.

And this UP is confusing: A drain must be opened UP because it is stopped UP.

We open UP a store in the morning but we close it UP at night. We seem to be pretty mixed UP about UP!

To be knowledgeable about the proper uses of UP, look UP the word UP in the dictionary. In a desk-sized dictionary, it takes UP almost 1/4 of the page and can add UP to about thirty definitions.

If you are UP to it, you might try building UP a list of the many ways UP is used. It will take UP a lot of your time, but if you don't give UP, you may wind UP with a hundred or more.

When it threatens to rain, we say it is clouding UP. When the sun comes out, we say it is clearing UP. When it rains, it soaks UP the earth. When it does not rain for awhile, things dry UP. One could go on and on, but I'll wrap it UP, for now . . . my time is UP !

Did this one crack you UP?

If laughter truly is the best medicine, I hope your Monday has been brightened UP by today’s Social Incites!

I recently heard that the American snack cakes “Twinkies” by Hostess Brands are in danger of disappearing off grocery store shelves because of financial difficulties. Granted, I haven’t purchased or eaten a “Twinkie” in countless years. Yet I was saddened by the news that this icon from my youth may no longer be available as a fond reminder of my early years, nor will my grandchildren be able to experience this packaged treat. I don’t believe that I can (or would want to) single-handedly help “Twinkies” stage a comeback, but I plan to purchase a box next time I’m at the store, just to show my support and ensure that my children have an opportunity to create a joint memory with me of Hostess cakes.

Whether or not you care that “Twinkies” may soon be history (or whether or not you even know they ever existed), I have a related question for you today. Can you imagine life (yours or your children’s) without The Gray Center?

We are a very small nonprofit organization, with an annual budget less than $100,000. We respond to needs and provide valuable services around the world with a budget that provides for only 45 staffing hours per week. We receive no government funding. We receive no private grants. We charge minimal prices for our services, knowing that the people who need them often do not have the money to pay for them. In the past, we relied on the sales of books and DVDs to fund our budget so that we can provide our services. With the rise of Amazon and e-readers, that is no longer feasible.

Will you do your part to show support for the work we do, and help to ensure that we can continue to be here for you, your children, and your grandchildren?

While your gift of $25, $100, or even $500 will not meet all of The Gray Center’s needs, your show of support, combined with the gifts of everyone else reading this email, may be exactly what we need to stage a powerful comeback. If you are unable to give at this time, perhaps you can arrange for someone else (a friend, relative, employer, or local business) to give in your place.

What does The Gray Center mean to you? Who have you told? How much have you given? I hope that today will be the day that The Gray Center outpaces Twinkies, for so much more is at stake in the lives of our families, schools, workplaces, and communities. We believe that this Social Incites™ newsletter, Social Stories™, The Social Response Pyramid™, our web site, presentations, groups, classes, library, and bookstore meet a crucial need today, and will far into the future, if only you will help support us.

Will you give a gift today?

Thank you in advance for your support, your help in advertising The Gray Center, your encouragement, and your financial contributions. We literally can’t do it without you!

Statistics show that only one or two of the thousands of people reading this email will respond by giving. If everyone decides to be the ONE that gives, The Gray Center could have the support it needs, not only to survive, but to thrive, with opportunities to increase our services and reach even more people with our information and support.

For the last few weeks, I have spent almost every evening in the hospital visiting a friend. She’s been struggling with issues related to depression, bi-polar, ADHD, anxiety, and difficulty regulating medications. We’ve laughed, cried, and prayed together, and reminisced about the good times we’ve shared since high school (that’s a lot of years!).

One night last week, my friend was quite distraught over an altercation she had with a staff member earlier in the day. She talked about the hurtful things the person had said, the pain augmented by the fact that it was done angrily, and in public. The stress that resulted was almost more than my friend could handle, and she indicated that she wasn’t likely to get any sleep again that night.

She was particularly upset that the person who had clashed with her was one of the hospital’s “DBT trainers.” DBT is “Dialectical Behavior Therapy,” the method taught each day to all of the patients to help them get in touch with their emotions, manage those effectively, and find ways to connect effectively with each other. My friend lamented that the staff person was clearly better at teaching the method than she was at using it to control her own interactions with others. Then she added, “I go to the classes, but I just don’t understand any of it...There has to be an easier way!”

I grabbed a piece of paper and a pencil, and began to teach my friend the “Social Response Pyramid™.” After just a few minutes, my friend said, “I understand this! It is so much easier than DBT. It actually makes sense to me!” Visiting hours ended about ten minutes later. As she walked me to the door, my friend thanked me, and said that she was feeling much calmer, and knew she wouldn’t be losing any sleep over the issue. She had a better understanding of what had happened, and had a plan for what to do the next morning when she encountered the staff person again.

For me, that’s the beauty of the simple tool I’ve developed. The Social Response Pyramid™ is easy to teach and use, and typically “makes sense” to people; even those who struggle to understand social interactions on their own. I’ve often seen it diffuse anger or anxiety, and help people come up with valuable “next steps” for identifying and moving toward their goals.

Yet this isn’t a tool only for those who struggle due to mental, physical, or emotional functioning, financial or family circumstances, health issues, relationship difficulties, loneliness, etc. Like the staff members my friend encountered, I find that I need to use The Social Response Pyramid™, and a variety of other strategies, to continue to better understand myself and others, and to be more effective in my social interactions.

Whether you use the Social Response Pyramid™, or any of the many other strategies available today, hopefully you will continue to experience success, both in your personal life, as well as in your work with people who rely on you to come alongside them to teach, support, remind, and encourage. 

My husband is currently unemployed due to a slow-down with his employer’s vibration analysis work. This frees up additional time for him to help me at The Gray Center and at home. One of the tasks he’s taken on at home is purchasing the groceries each week. Here are a few examples of what we’ve encountered along the way:

One time, I needed “instant vanilla pudding” for a recipe. He came home with a package of four 4-ounce containers of ready-made vanilla pudding. When I pointed out that I had hoped to receive a four-serving size box of powdered instant vanilla pudding, he commented, “How much more instant can you get than the stuff you open and eat?”

When I wrote, “Kleenex” on the list, my son tried to convince my husband that I always purchase a store brand of facial tissue, even though I refer to it by the more popular brand name. But they came home with the more expensive Kleenex tissue because my husband didn’t want to get the “wrong” item.

When I write “toilet paper” on the list, I know my husband will come home with his favorite brand, even though it may not be the best value or the brand that I prefer—that’s one area where he doesn’t like to conform or compromise.

Recently, I tried being more specific, and wrote, “Minute Maid, $2.50” on the list. Both Steve and my son spent time in the powdered beverage aisle looking for a lemonade mix, finally calling me to discover that I meant the sale-priced ready-made orange juice in the refrigerated section.

Getting the groceries is a great way for my husband to contribute to our family. And it saves me valuable time each week, freeing up my schedule to spend time with our four kids, to prepare dinner, or to work on my own employment-related activities.

But the scenarios I’ve listed above (in addition to exposing a common source of humor in human relationships) are an indication of a very important social truth: We all start out with very unique perspectives, something I call “MY CONTEXT”—the basis of The Social Response Pyramid™, the teaching tool I’ve developed.  When I write the grocery list, I have my own ideas about the brands I like, ways to save money, plans I have for future meals, etc. When Steve purchases the groceries, not only is he missing much of the information I used to generate the list, but he also brings his own unique “CONTEXT” to the task, with his own ideas about preferences, needs, and expectations.

While unique personal CONTEXTS can cause miscommunication and frustration, they can also drive us to implement more effective strategies for being successful. I’m learning to be more specific when I generate my grocery list, and I take a few minutes to discuss the list with Steve before he leaves for the store. He is learning to ask questions, either while he’s first looking at the list, or when he is searching for an item in the store. We’re both learning to express appreciation to the other for the ways we contribute to the family; even if they’re not done exactly the way the other person would do them. And we’re learning to laugh at the ways our unique CONTEXTS contribute to keeping our lives from becoming too dull.

Here’s my “Social Incite” for the week. We all approach life through our own very unique perspective. We can learn to understand and appreciate all CONTEXTS (our own and others’), and develop and implement strategies for being successful!

Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, “To Tell or not to Tell?” Who needs to know about the diagnosis? When does the individual himself or herself need to know?

The answer to this question is highly individual, and may change over time (perhaps again and again).

Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful.

1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better enable him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social context, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.
2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don’t seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where “everyone” knows about the diagnosis except the individual with the diagnosis!
3. How does the individual feel about the diagnosis? Some people choose not to voluntarily disclose their diagnosis. I know other individuals who are eager to share this information with others. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.
4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. It is important that the diagnosis not be used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why people with the diagnosis need to work harder in some areas than others, but it doesn’t excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person’s life. In the cases where this has happened, I’ve seen people who view their diagnosis very negatively, seeing it as the source of all the things they don’t like about themselves or their lives. (We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.)

Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you’d like to share information that might be helpful to others, feel free to do so on my Social Incites™ blog or Facebook page.

Thank you all for your continued work in promoting social understanding around the world!

I spend a majority of my time answering questions (by phone and email, and through coaching and consulting sessions) from people all around the world. These questions often center around a desire to gain information about their child (or the child in their classroom), the need for help with a particular situation (either creative ideas or resources they haven’t tried before, or a new place to take their child to access resources), suggestions for educating others about their child (or themselves, if they’re a person with autism), or ways to involve their child or young adult in more meaningful ways in their community.


Often, I am contacted by parents of children (of a variety of ages) who are just recently being evaluated for the possibility of an autism spectrum disorder (ASD). Sometimes they question whether they should pursue a formal diagnosis.


Naturally, this is only a valid question if the child (or young adult) meets the criteria for ASD. It would not be responsible to advocate giving an individual a diagnosis that does not correctly describe his or her developmental history, and current level of functioning (including strengths and challenges). At The Gray Center, we do not do evaluations or provide diagnoses. However, I often walk parents through the following thought process, hoping that it helps them to make the decision that is right for their child:

1.     Is your child being met at his or her current functioning level? That is, are his/her strengths recognized, applauded, and utilized for motivation, positive peer interaction, and opportunities to offset his/her challenges? And are his/her challenges being addressed in a thoughtful, proactive way? One mom who has visited our office is thrilled with the services her daughter is receiving from her school. The school has created a social skills group which meets regularly, a counselor is meeting frequently with the child and her teachers, the child has a supportive peer group in her classroom and on the playground, and is doing well academically in the classroom. This mom does not feel a need to pursue a formal diagnosis at this time for her daughter, even though she shows many signs of having ASD.
 
Addressing an individual’s current functioning level in an effective way is of huge importance, given the opportunity to possibly guide a person toward recovery from autism, or at least, reaching his or her full potential, and/or increased access to social and academic success.
 
2.     The second thought concerns a “common starting point.” This is closely related to the first point (in fact, a common starting point often leads to a child being met at his or her current functioning level). Does everyone working with the child have the same (or similar) understanding of the child or young adult, and the assistance he/she needs to reach their full potential? If the adults in the environment consistently believe that a person is deliberately acting out, without considering his/her sensory needs, communication and/or learning differences, and emotional or social struggles, then information about the presence of ASD might help this individual’s family, school community, or daycare environment address his/her needs more effectively. On a more personal level, I knew a young man who realized he had Asperger’s Syndrome after reading a newspaper article about the diagnosis. He commented to his parents, “This is me, isn’t it? And all these years I thought I was just stupid.” He had never been told that he was on the autism spectrum; this information may have saved him from years of self-doubt and a feeling of isolation. Once he knew his diagnosis, and was able to research it and meet other people with similar interests and abilities, he enjoyed a much more positive self-image!
 
Not only does a common starting point benefit the individual with ASD, but it can also benefit others working on this person’s behalf. Teachers (and other professionals), parents, and employers can attend conferences, read books, or consult with others who have experience working with individuals with similar strengths and challenges. I know one family who has been told that their child has “a brain disorder.” Although his profile seems very similar to those diagnosed with ASD, these parents have no one to connect with to share experiences, no books to read, and no other kids for their child to form friendships with in a place such as The Gray Center. Rather than having the benefit of using common knowledge about autism and what is most likely to be beneficial to this student, teachers instead approach the situation “from scratch,” looking to develop teaching strategies that might help a child with “a brain disorder.”
 
Can an individual’s needs be met without a formal diagnosis? Most certainly! Is this always the case? Unfortunately, it is not. The question of whether to pursue a diagnosis will need to be made on a case-by-case basis, and possibly be re-evaluated on a regular basis (as needs and abilities change, understanding of the individual increases, and adults rotate in and out of the person’s life). And certainly, there are people who have “recovered” from autism and no longer need to tell people about their diagnosis, as well as people who would prefer not to receive the diagnosis in the first place. (I’ll write more about that next week!)
 
Feel free to weigh in on this discussion here, or on my Social Incites™ Facebook page. Your experiences and opinions may prove helpful to individuals who are currently struggling to answer the question, “To diagnose or not to diagnose?” in their own life.
 
Special thanks to those of you who are making a formal diagnosis less of a necessity! Your flexibility, willingness to meet each individual at his or her current level of functioning, and desire to communicate with others in that child’s life, are greatly appreciated! Thanks, too, to those of you who are helping to make a diagnosis of autism a less negative experience for those who receive it. There are many people who are able to celebrate the presence of autism in their lives!

Last week’s Social Incites™ ended with, “Here’s hoping you and those around you can make the most of everything that comes your way this week…with lots of happiness along the way!” Today I thought I’d share an experience which brought lots of happiness my way last week!

My ten-year-old daughter invited me to a “Saturday Sleepover.” After I gladly accepted, she busily prepared for our special night by washing the sheets (soliciting a little help from Dad in learning to measure the detergent and use the washer and dryer), getting her reluctant brothers to help her re-make the top and bottom bunks, choosing a movie (and getting it ready to play in the family room), putting my pillow on the bottom bunk, and arranging some teddy bears on my pillow. She even made hand-lettered signs that read, “Mom’s Bunk” and “Jenae’s bunk.”

After watching “Facing the Giants,” (I cried through the movie; she said, “Mom, kids don’t get all emotional about things like that”) we ate cookies, brushed our teeth, tucked ourselves into our bunks, and talked way past her usual bedtime. It was truly a precious night. We talked about things that never would have come up if we hadn’t been spending that time together. We grew closer, and we made memories to last a lifetime. Together we created a tradition that we look forward to repeating numerous times!

Here’s my Social Incite™ for the week:

Whether you think you don’t have time for experiences like these, or your child is too old, or too young, or too disabled, or whatever excuse you might have, I highly encourage you to take time this week to do something meaningful for and with someone special in your life. I believe you’ll be glad you did!

When I conduct coaching sessions or consults with families, I frequently hear parents identify that their primary goal for their child is that they “be happy.” When I interview teens and adults for my “Social Coaching for Workplace Success” program, they, too, often respond that what they want most in life is to “be happy.”

Happiness is a wonderful thing. Most likely we would all say that we like to be happy (it’s certainly preferable to being miserable)! Happiness is a gift that should be treasured.

The problem with happiness, however, is in our understanding of it. Happiness is a great feeling, but where does it come from?

If we believe we can create others’ happiness, we will structure the environment and experiences to help them avoid disappointment, difficulty, frustration, and sadness. And when these negative experiences come—as they always will at some point—our loved ones feel as though we’ve let them down. Some go to the extreme of “shutting down,” or even believing that life isn’t worth living.

When happiness is the primary goal for our own life, we risk overlooking the needs of others and our potential ability to meet those needs. We rob ourselves of the joy that comes from persevering through difficulty and frustration, to experience satisfaction and contentment from a job well-done.

The reality is that the things, people, and situations that contribute to our happiness come and go, and even our ability to feel happiness in their presence may be inconsistent. And negative situations abound, threatening to destroy any tenuous happiness that may reside within us.

I believe a better goal for ourselves and our loved ones is to “learn how to be happy.” If we learn (and teach others) that happiness is more closely linked to our own choices than it is to the things others do and say, we can work on developing strategies which govern our positive choices, such as:

-       Managing stress (and our emotions) effectively

-       Thinking positively

-       Identifying our needs, and finding effective ways to get them met

-       Valuing the people in our lives who are the basis our “supportive relationships”

-       Reaching out to others by contributing our time, talents, and other gifts

-       Learning skills to build and maintain effective connections with other people

-       Learning from our experiences (both the positives and the negatives) so that we can continue to make better choices in the future

-       Recognizing the natural “ebb and flow” in life, and dedicating ourselves to continuing to move forward, using each new day to identify and respond to new opportunities

I found this “inciteful” quote online:

The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes their way.

Here’s hoping you and those around you can make the most of everything that comes your way this week…with lots of happiness along the way!

Marriage doesn’t come with instructions; nor does parenting or friendship. These are often the most significant relationships in our lives, yet unlike interactions with mechanics, employers, medical professionals, attorneys, teachers, utility workers, and other service providers, these relationships are typically not governed by well-defined expectations.

Most of us, even if we have never specifically said so, expect our children to grow up to be respectful, kind, productive, and responsible. We hope that these expectations will be met through lots of love, constant gentle (or not-so-gentle) correction, or some other form of osmosis. While this works for some people, it doesn’t work as well for many children (or their parents), and is even less likely to work for people with autism spectrum disorders (ASD).

The plan for success is very basic, yet we often overlook it, or fail to recognize its importance. The result can be frustrating for everyone involved in a social interaction. Just like last week’s reminder of signs defining expectations as, “No shoes, no shirt, no service,” our plan for success contains the following three components:

1.     Define your expectations. If you expect respect, what does that look like, sound like, feel like? Respect is a very abstract concept unless we provide specific examples to help others understand what we expect. This is true of other expectations which we too often refer to in a very ambiguous way: “Follow directions, be kind, don’t be late, do it yourself, ask nicely, use your words, don’t eat too much, go to bed on-time, work harder, etc.” While we’re at it, it can be very helpful to state our expectations in positive terms (i.e. “Please walk in the halls,” rather than “Don’t run.”) Be concise, specific, and yet detailed enough to let others know how to be successful.

2.     Provide instruction and strategies to help others meet your expectations. Sometimes they need more information before they can understand what we mean, or sensory or calming strategies to manage their functioning, or visual cues (posters, photos, cue cards) to remind them how to respond effectively. The Social Response Pyramid™, Social Stories™, Social Behavior Mapping™, and Incredible Five Point Scale™ (among others), can be valuable tools for helping people to meet others’ expectations.

3.     Just as “No shoes, no shirt, no service” defines how to be successful…and what the consequences will be if the expectations are not met, it’s important that our plan for success includes specific information about consequences for people’s choices (both positive and negative). Then we must allow them to experience those consequences in order to learn how to be successful!

As I coach families around the world, I often get to number 3 in the plan for success, and hear, “Isn’t that mean? I don’t want my child to be upset!”

Is it mean for the electric company to turn off power if bills aren’t paid? Is it mean for police to give expensive tickets for breaking traffic laws? Is it mean for a teacher to give a lower grade if homework isn’t turned in on-time (or is not done according to the teacher’s requirements)? Is it mean for an employer to dock pay—or terminate employment—if an employee does not meet expectations for attendance or performance? Of course, the flip side of that could also read, “Is it mean for the electric company to continue to provide power to those who pay their bills? Is it mean for police to allow people who follow traffic laws to go about their business in peace? Is it mean for teachers to give good grades to students who meet their requirements? Is it mean for employers to allow employees with good attendance records and demonstrated productivity to keep their jobs, or to be promoted with greater pay and responsibility?”

Regardless of how you feel about the appropriateness or “fairness” of each of the above scenarios, the truth is that our society can only function with clearly defined—and enforced—expectations. We do our children a great disservice if we do not teach and model these basic truths at home.

The good news is that I’ve seen countless families experience and enjoy success when they follow this basic three-step plan. It’s my hope that you will also reap the rewards of extra time and effort that goes a long way toward helping everyone to meet expectations!

Over the years, as I’ve entered various establishments such as stores, restaurants, gas stations, movie theaters, and libraries, I’ve often been greeted by a sign on the front door which reads, “No Shoes, No Shirt, No Service.” Spelling out expectations helps visitors to know how to successfully receive services, and provides the owners with the stated right to refuse to provide a service—or to escort someone to the door.

Everyone around us has expectations for our responses. Most often, those are clearly spelled out prior to an interaction. We are provided with written instructions—and are asked to agree to a variety of expectations—every time we join a club, class, or sports team, and whenever we move (by signing a lease agreement or stack of mortgage paperwork), access new services such as utilities, web sites (including social media), sign up for a credit card or bank account, go to someone for repairs (for appliances, vehicles, etc.), secure new employment, go to a medical or other professional, adopt a pet, or seek a new skill or experience (driving, skiing, running a race, etc.)

When expectations are stated up front, we know the terms for the interaction; we know how to be successful, and we know what will happen if we are unable (or unwilling) to meet those expectations.

Yet it’s interesting to me that in our most important interactions with others—primarily our marriages, parenting relationships, and friendships—we often do not spell out expectations ahead of time. In fact, many of us cannot even articulate our own expectations, nor do we always know what others expect of us. This causes difficulty in many of these relationships. This is especially true when autism or some other “social disability” is involved, because these individuals have difficulty “reading” social cues, and responding effectively.

Next week I’ll share a “plan for success” for helping ourselves and others to define and meet expectations. For now, I challenge you to note this week how many instructions or clearly defined expectations you can find around you. I’m guessing you’ll be surprised at how much of our life—and our ability to be successful-- is governed by others’ expectations!

Laurel Falvo, CFLE

Certified Family Life Educator

Executive Director, The Gray Center for Social Learning and Understanding

www.thegraycenter.org