November 26, 2013

"Don't Call Me Mom!"

The following is written by Dr. Marc Ellison, the Interim Executive Director of the WV ATC.

In the mid-1990s – a world of antiquities now, I know– my friend Cynthia Garcia published a wonderful essay in which she explained her disdain for being called “Mom” by professionals. Because the essay was published prior to the widespread use of that series of tubes known as the Internets, I can no longer find a copy of that essay. But plenty of other sources tell me that this shorthand phrase commonly used by professionals can be insulting to the parents of those we support.

Sophie’s mother explains it well in her article found at this link.

Over the years, I have variously been referred to as Mom in IEP meetings and at doctors' offices, and I have to say that it always makes my skin crawl. I find it undignified, in a way, a word that doesn't exactly conjure the same respect as Mother, for example, . . . I want my children to call me mom, and I even don't mind being referred to as Sophie's mom or Henry's mom or Oliver's mother. [B] I have to say that when I'm negotiating with a doctor over my daughter's healthcare needs, or fighting an insurance company or discussing my daughter's education in an IEP meeting, calling me Mom as in Mom has some concerns about such and such or Mom, how are we doing today? -- well, I'm going to bristle. The word is more of an endearment, to me, than an address. If we're going to continue down this much-welcomed path of patient-centered care where parents are equal partners in the care of their child, particularly those with special healthcare needs, we need to address one another by our names. 
 Research shows many parents agree. In their manuscript “Don’t Call Me Mom: How Parents Want to be Greeted By Their Pediatrician,” Amer and Fischer (2009) describe the expectations parents have in regard to relationship building with their pediatrician. 88% of the parents in the study said the use of their name by the pediatrician during the initial greeting was integral to the development of their therapeutic relationship; however, only 14% of residents and 24% of attending physicians did so.

We who work in the business of supporting others spend a significant amount of time discussing person-centered values and language, so it makes sense to me that our professional culture really should be primed to understand and accept this concept. Yet many in the human service community continue to be less than thoughtful of the issue raised by Mrs. Garcia, and insensitive to how we interact with folks who perceive our communication gaffs in the same light as Sophie’s mother described:


Let's all do our part in 2014 to ensure this gaff doesn't continue to be a part of our professional culture.

August 19, 2013

Sibling Resources

Autism Speaks' Family Services forum provides a terrific resource titled: "A Sibling's Guide to Autism," available at this link. One must register to download the document, but it is worth the effort.

In addition, please check out the video: "Being an Autism Sibling", below. Additional videos on sibling issues have been added to the resource list to the tight of this page.

June 13, 2013

Marshall Graduate Discusses Bereavement And Autism

Marshall University graduate, and former participant in the College Program, Brian Wong was recently interviewed on Autism Radio's "Hope Saves The Day" show. On the program Brian discussed the topic "Bereavement and Autism," in which he has a scholarly and personal interest.

You can hear the 28 minute interview at this link.

Brian recently authored an article for the ASA's Advocate on the topic, and will speak at the upcoming ASA national conference held in Pittsburgh in early July, 2013.

April 16, 2013

ASD and Fitness

The following is written by Stacie Merritt, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Stacie discusses the importance of fitness to life quality, and provides several strategies designed to introduce exercise.

For many, the idea of starting a fitness program can be overwhelming. It is easy to get too busy or overwhelmed but health issues can be caused by a sedentary lifestyle. For optimal physical, emotional, and cognitive well-being – it’s a good idea to move!

Evidence shows that exercise has tremendous benefits for all. Fitness for people living on the autism spectrum is no exception. But improved fitness for individuals with autism spectrum disorders sometimes requires significant planning, and a greater exchange of information between professionals, educators, and parents. There are creative ways to get moving. The key is to ask individuals what they like to do, then then figure out how you can connect their exercise regimen with their interests.

If you are ready to introduce or enhance fitness for the individual with whom you work, teach, or live, here are several ways to make exercise more fun and effective suggested by autism and fitness expert Eric Chessen, M.S., YCS:

1. Short periods of activity. Pick 3 or 4 activities to do anywhere from 10 seconds to 5 minutes (with breaks) throughout the day. Having shorter durations of fitness can be less anxiety provoking and more tolerable for those with aversions to movement or new activities. A few favorites are medicine ball throws, bear walks, hops, overhead carries, rope swings, and jumping variations.

2. Begin introducing vegetables. They may not even want it on the table near the plate the first time, but vegetables are important. Keep reintroducing them. Don’t make a fuss. Don’t even acknowledge that the broccoli spear is there. Let them discover it.

3. Introduce medicine ball throws, push throw, overhead, and scoop.

4. Ditch treadmills and other running machines for rope swings, short sprints, and frog hops. All the cardiovascular benefit (more, in fact)without the boring-ness.

5. When in doubt, pick something up and carry it overhead. Most athletes had low muscle tone with poor posture when they began exercising. Overhead carries solve both these issues.

6. Use fitness as an opportunity for socialization. Want to see interaction come to life? Have two students toss a ball back and forth or perform tandem (together) jumps forwards, backwards, and side-to-side.

7. Provide Choices. I like to have my athlete pick which activity or piece of equipment they want to use first. It promoted independence and autonomy.

8. More Protein. It builds healthy lean muscle and increases satiety.

9. Build a fitness network. Get together with other families and plan group hikes, bikes, and group exercise activities.

10. Play Outside. Something about being outside makes exercise more fun. It also promotes generalization or crossover of skills from one environment to another.

11. Climb stuff. Climbing up a rope ladder or slide requires trunk stability, upper body strength, coordination, and grip. It is one of the least-performed yet most effective fitness activities.

March 22, 2013

Our Social Responsibility

The following is written by Peggy Hovatter, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Peggy provides a discussion on developing social clubs for individuals living on the autism spectrum.

Human social behavior is nothing short of incredible. We are capable of transmitting an amazing amount of information with relatively subtle signals. By assessing just how often and how complexly we use social skills to navigate through our world, we bring to light behaviors that have become second nature to us. During your next visit to the grocery store, church or local restaurant objectively observe yourself and others in the constant give and take of social behavior, and take note of the subtle cues, gestures, expressions, vocal patterns, and indicators used in those exchanges.

Taking these skills for granted is easy to do.

The importance of social exchange for our wellbeing is immeasurable. We crave sharing our space and ideas with our friends or others we encounter in life. Social interaction leads to some of the most meaningful human experiences: friendship, courtship, marriage, laughter, politics, philosophy, parties, etc. Because the value of human exchange is so great, we are forced to assess what adverse effects may occur if socialization is compromised.
Socialization is considered to be the primary deficit in those with autism spectrum disorders. Shouldn’t it then carry equal importance with regard to skill building as do academic and daily living?  More and more, social goals and objectives are being included in Individualized Education Plans (IEP),  Individualized Habilitation Plans (IHP) and Individualized Family Service Plans (IFSP).  How wonderful that we understand social growth as an integral puzzle piece of a life of quality!  Our challenge now is to implement techniques that have meaningful outcomes.

Use of a “club” format was implemented seven years ago whose birth was a result of the Family Focus Positive Behavior Support Program. I was meeting intelligent, fun-loving, humorous adolescents and teenagers (diagnosed with Asperger’s/High Functioning Autism) who remained isolated when it came to friendships.  Upon further investigation, I realized that they misunderstood interactions from typical peers and were not given the opportunity to feel one of the most important intrinsic social rewards in human nature: “belonging”.  Feeling that they were a part of something…anything…relating to others their own age.  A few years ago, realizing that the younger kids had similar needs, another club was formed for elementary school aged students.

My mission was identified. Next step was how to provide activities that would be fun and informative? There are many resources available that were developed specifically for people with autism. Authors off the top of my head include Judith Coucouvanis, Michelle Winner, Cindy Schneider, Andrew Nelson, Steve Guttstein, Brenda Smith Myles and Pamela Wolfberg to name a few. A favorite activity among the kids is “Spotlight Focus” (Nelson’s book) that addresses facial expressions with matching comments:

As my research continued, I realized that any resource that addresses self-esteem, team building and just plain FUN would match the club format perfectly.  Games that involved idioms became a consistent part of our schedule and continue to be enjoyed.  New ideas have a way of popping up if you’re in the “social mindset”. I found some three-part sequence cards online and developed an activity that involved listening and attending. 

While browsing at a yard sale one weekend, I saw a ream of cardboard strips from a hardware store that showed the different shades of paint.  Each strip had the same color from light to darker.  Aha!  Idea! Let’s show the different levels of emotions via lighter to darker colors and increase understanding through visual supports!  The following activity was developed: The group divided into two teams and were given a crayon and a piece of paper with a rectangle divided into four sections.  The “Happy” team had to think of four varying levels of happy and identify each level with a word.  As the emotion increased in intensity, the color got darker.  The “Happy” team came up with pleased, happy, thrilled and ecstatic .  The “Mad” team did the same with their emotion.  The following is a video clip of the “Mad” team reporting out after group discussion:


Activities that require turn taking and working together can address important social skills.  In the activity “Build A City”, each child is given a different colored marker.  There is a list of what each color is assigned to draw.  For example, the green marker will draw trees and shrubs, the black marker will draw roads and parking lots, etc.  Conversation between participants begins to flow quite naturally as they begin to draw their city.

Conversation starters and topics through visual support can be as simple as a bingo game. Here's one with a twist! Look carefully at the card below. There are many different pictures of the same generic item, such as Christmas trees, wreaths, candy canes, snowmen etc. Participants have to listen carefully to the item that is described such as “A Christmas tree with red diagonal stripes” as opposed to “A Christmas tree made out of puzzle pieces”.

Practically every person enjoys acting and performing.  Here’s some role playing ideas that directly relate to social situations for people with autism:

1. You are talking to someone about ideas for a science project.  They look away, roll their eyes and start to play with their pencil.
2. You enter class and see your friend looking at this spelling test.  He looks upset. When he sees you coming, he quickly turns the test paper over.

3. You get on the bus and sit with a friend.  She is smiling and looking at you.

4. You get on the bus and sit with someone.  They turn away and cross their arms, looking mad.

In summary, a club is a group of people with similar interests who meet regularly to enjoy one another and share commonalities.  Members are relaxed and accepted.  Members feel that they ‘belong’.  Relationships are formed, friends are made.  The knowledge that you’re part of a group sustains you during other times of your life.  
It’s a great feeling!

January 22, 2013

Grandparenting Children with ASD

Intake Coordinator Angela Bryson will be conducting an electronic workshop on February 1, 2013 (via GoToMeeting) related to grandparenting children diagnosed with autism spectrum disorders. The workshop is free, but limited to 20 participants. Please click this link to arrive at the website on which you can register.

December 19, 2012

Managing Stress During The Holiday School Break

The following is written by Luke Walker, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. In this article Luke discusses strategies to overcome holiday stress.
Transition from school to summer holidays or during the holiday break can be very difficult. Unstructured periods, or “down-time,” during the day can be a challenge for individuals with autism spectrum disorders, and several days of unstructured time in a row can cause worry and apprehension for many parents.
Your child may become bored easily and often with all the excess free time, and this may become demanding of your time, attention and patience. The best approach to dealing with down-time is to strike a balance between structured activities and free-time.
Use your visual calendar:
A simple calendar of events will help your child plan and prepare in advance for upcoming activities. Fill in events in advance such as family outings, visits to relatives, vacations or casual recreational activities. Try not to over schedule too many events as this is a time for relaxing. One planned event a weekend is nice. Three or four can feel rushed and hectic. Leave room on the schedule for down time everyday for your child, where they can do whatever they want or if this is difficult present some choices of appropriate activities they may enjoy. Take advantage of the time to schedule in family time at the end of the day for talking, reading and relaxing together.
Rules and Routines:
It is often tempting to be more flexible during down-time and while this is appropriate for leisure activities, it is important to keep family rules and routines in place. This helps keep consistency which helps lower anxiety for individuals with ASD. If you do not have family rules and routines, now would be a great time to start. It can be especially tempting to let kids stay up later during these periods and while some is OK, even a little bit of sleep deprivation can lead to irritability and meltdowns.
Try to stick to scheduled bedtimes (within reason) and stick to scheduled chores too as well as other established behaviors. Playing video games or being on the computer all day should still remain off limits.
Community Resources:
Take advantage of community resources whether it is taking advantage of a “Sensory Santa” day at the mall or viewing Christmas lights/parades/displays. Doing role-play or prepping your child to what they could expect on these outings would also be a great idea. Be sure to give your child a choice of activity and only present choices that are available. Add these to your calendar in advance. The sooner you can start planning, the more likely you are to attend. 
Plan for at least one success every day:
Try to incorporate an activity that you child is good at or loves to do every day. You could also use this time to help make a small step towards a goal you are working on whether it is dressing skills or sitting still at the dinner table for 5 minutes.
Make use of technology.
This might be downloading a new educational game to your smart phone or allowing some time to play skill building games online. Computer time is often seen as a reward even though it is still a learning activity.
Teach calming techniques:
 These might be something simple like deep breathing, or more involved like yoga and meditation. They may be teaching your child to recognize scenarios that may be a challenge for them and teach them to ask for something that helps calm them. This could be a hug, spinning or a simple verbal cue.
Involve your child in your activities:
During the holidays, there are plenty of opportunities to complete tasks together, whether it’s writing cards, decorating the house or helping in the kitchen. Even if fine motor skills are difficult, or it is difficult to focus attention, you can involve your child in the last step of the activity (turning on the tree lights, icing on cookies, putting a sticker on cards) to enable more opportunities for success, satisfaction and reward.


October 25, 2012

Supporting Individuals With ASD Through Puberty

The following is written by Sarah Kunkel, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Sarah provides a discussion on the issues surrounding puberty for individuals with autism spectrum disorders.

Puberty can be one of the most confusing and overwhelming times for most teenagers, as well as for their parents. Between pimples and body odor, raging hormones, and middle school, it is a wonder anyone survives this tumultuous time! Throw in the some of the unique challenges that most individuals diagnosed with an autism spectrum disorder face (such as sensory issues, difficulty with social cues, and trouble deciphering the complex world of communication) and the successful transition through puberty can seem darn close to impossible.
An entire encyclopedia could be written solely covering the many challenges teens and pre-teens diagnosed on the autism spectrum face during puberty; however, here we will discuss the top three concerns of parents for this particular article. Those topics are (drum roll please) Hygiene, Personal Space, and Dating.

Hygiene: Smell You Later!
Ask any middle school teacher and they will agree that hygiene is a challenge for many kids going through puberty. And ask any middle school student and they will agree that hygiene problems are a challenge for any student’s social status. So, hygiene habits can be very important skills not only for their health, future independence, and job worthiness, but also for their social life and experiences.  Here are some useful tips to create more independent hygiene habits.

1.    One Step at a Time - As with any habit, learning to independently complete hygiene skills on a gradual basis can drastically minimize the amount of stress. So instead of teaching them 5-10 skills all at once, start early with only one at a time.  This will help you avoid stress and reduce the chances of hygiene creating an issue between them and their peers. I don’t think I need to remind anyone how mean kids can be in middle school.

2.      Step Away (and Leave Extra Time) – Many of us have the tendency to be overly helpful, especially on those mornings when everything has gone wrong and you only have 10 minutes to make the 20 minute drive to Billy’s school. But in the long run, everyone involved will be happier if you can gradually step away from completing every part of every routine for him. Start with small pieces of the task, such as Billy puts toothpaste on the brush and you help with the rest of the task. You can then gradually have him complete more pieces of the task until he can do it independently. You will need extra time for Billy to brush his teeth at first, so set the alarm clock a few minutes earlier.

3.   Make It Visual - Don’t forget that most individuals on the spectrum are visual thinkers. Creating a poster of the steps to getting dressed is likely to help Amanda complete that task independently.  And using a checklist of chores in the morning routine can be more helpful than an adult rattling off a laundry list of things that she needs to do. I bet it is less stressful for you too! Just don’t forget that you will probably need to teach them how to use the visual at first and avoid creating a visual that is too childish or immature, especially if the individual’s peers may see it.

4.      Make it Mean Something – One factor that may be easy to overlook is helping individuals on the spectrum understand the importance of the hygiene task. If someone told you that you had to hop on one foot while rubbing your belly, tapping your head, and singing “The Itsy Bitsy Spider” but didn’t tell you why, you might not be very motivated to complete the task either. But if making and keeping friends or dating was dependent on the task, then you may be more motivated to do it every morning. Social stories are a useful tool for explaining these reasons. They can help describe a situation in terms of social cues and perceptions while providing options to students about how to respond. These are available in books, on the Internet, and some of the best stories are ones written by parents, as they incorporate individualized information about the task and can also include pictures of the individual.

5.   Sensory Issues – Sensory aversions such as oral sensitivities, aversions to certain tastes or smells, can create barriers to certain hygiene tasks. It is important to pay attention to any issues with completing a task that are due to these aversions.  Find alternative products that avoid the factors making the experience aversive and if possible, allow the individual to choose the flavor of toothpaste or scent of deodorant they would prefer. To go one more step further, it can also be helpful to incorporate the individual’s sensory preferences or interests in the task.
A good resource for further information regarding hygiene and puberty that includes social stories on the subject matter is Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel. This book is available for loan in the WV ATC library for registered families.

Personal Space
Another important concern of many parents and professionals involves teaching individuals on the spectrum about respecting other people’s personal space and other people respecting theirs.  The importance of understanding and respecting boundaries can help an individual interact with peers and people they have an intimate interest in, report misconduct by others, and avoid engaging in sexual behavior that could be illegal.

1.      Watch the LanguageIt is important to use the correct anatomical names when educating individuals on the spectrum about their bodies. There are not many grown men I know walking around referring to their penis as “pee-pee,” and neither should individuals on the spectrum if we truly want them to be members of their peer group. In addition to the social inappropriateness of these nicknames, these terms can make it very difficult for an individual to report sexual victimization and especially to get any type of legal action taken against the perpetrator.

2.   Private Areas When teaching about private areas on the body, there is a tendency to focus on the difference between the areas we consider private, such  as those covered by a bathing suit, and those other areas that are not. This is an important distinction to avoid inappropriate exposure of an individual’s private areas to others. However, when teaching the concept of bad touch versus good touch, it is important to go a step further. Just because someone does not touch a person in a private area, does not necessarily mean it is a good touch. It is important to teach individuals on the spectrum that unwanted touch, even a hug or hand on the shoulder, is a touch that they do not have to accept. When teaching this concept, through social stories, video modeling, and/or role play, there can be different sets of rules about dealing with an unwanted touch to a private area and one to a non-private area. Role playing can be an extremely useful tool for this, as it can help them feel more comfortable with the script of telling someone they do not feel comfortable. It can also help the individual become an advocate for him or her, which is additionally important in expressing to others what sensory stimuli are aversive to them.

3.    Hugs There are important boundaries surrounding hugging that can be useful to teach, even in grade school. Hugging is something that some individuals may be aversive to while others may crave. Teaching the rules about hugging could help an individual with autism avoid allegations of inappropriate touching by them and help reduce their chances of becoming a victim of sexual abuse. Creating a concrete visual about the different roles of people in the individual’s life and the rules around personal space and hugging can be extremely useful. One idea is to use a visual of 4-5 circles in a bull’s eye formation and create different categories of relationships. The categories could include family, best friends, friends, people I just met, and strangers.  Arrange the categories with the people the individual is closest to in the center circle and work outward. Then place people you know in the appropriate category and list the personal space rules associated with that category. This can be a helpful way to make the rules less ambiguous around hugging and other personal space issues.

Additionally, if an individual seeks out hugs, it may be important to begin to encourage them to ask first. There are many people individuals may be around throughout their day that are not in their innermost circle. It important that this boundary is set, especially as they approach an age when their peers are not seeking out hugs in the same way.  We often see hugging as sweet and innocent, however being proactive about teaching appropriate boundaries can help ensure an individual does not become a victim or a perceived perpetrator.

Despite the complexity of this topic, this section will be kept short and sweet. There are many issues to consider within the realm of dating, such as flirting, stalking, going on a date, intimate behavior, etc. Much of dating involves unspoken rules that even the rest of us have often found hard to decipher when we first started dating, and likely still find baffling. Wading through this sea of unspoken and ambiguous rules can be exhausting. Therefore, it is important to utilize social stories, video modeling, and role playing to help establish certain boundaries. For instance, creating a video model may be an excellent way to demonstrate the difference between flirting and stalking. Some individuals on the spectrum may have difficulty perceiving kind words and minimal attention from a romantic interest as reciprocated romantic interest from their beloved. A factor compounding this issue is that the other person may not want to bluntly make it clear that they are not interested. Hence now, you may have an impending disaster on the horizon, involving the principal, other person’s parents, and allegations of stalking. Some useful strategies for preventing such issues are listed below:

1.      Role Play – Practice makes perfect. This strategy can be useful when preparing to ask a girl to a dance, figuring out what to talk about on the first date, or feeling comfortable telling a boy that she does not want to be kissed. If possible, it can be extremely effective to use a group of peer models to demonstrate the behavior and then help the individual practice. It is important to carefully select peers that are caring, helpful, and good themselves in these scenarios.

2.      Be Proactive – Use whatever media you have available or create your own video models of the subject, whether it is as simple as how to hold a conversation or as complex as the difference between another person flirting or acting as a friend. Video models do not have to be overly complex or highly produced. The important thing is that they provide the necessary social information, a possible script, and an opportunity to discuss the factors that make the situation successful or not.

3.      Be Blunt – Consider speaking bluntly with the individual about hard topics. Whether it is the other person not being interested or about the sexual matters. Additionally, encourage the romantic interest and other people involved in the situation to be blunt to the individual about the facts. It may sting a little, but not as much as expulsion, pregnancy, or jail.

The complexities of puberty and related issues are numerous.  Hopefully some of these helpful tips will lessen the stress of puberty. Thinking ahead about issues to come, laying out concepts in a concrete and literal manner, and treating individuals on the spectrum at the same level of their peers is likely to help them make it through to the other side.