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.

July 05, 2012

Establishing Habits That Lead To Potty Training

The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center.




These are all emotions every parent feels when faced with the momentous milestone of potty training. For obvious reasons parents look forward to this development, perhaps more than any other. But, it is yet again another challenging area for folks on the spectrum.  Research has shown that individuals with autism often have significant struggles learning this skill.
This task will certainly take considerable planning and effort. Gains may be slower and setbacks are likely, but success is possible.  With any child, individual differences play a key role in the pacing and selection of strategies. But, a basic understanding of the child’s learning characteristics and the main principles of positive behavior support can be critical to achieving your goal. 
Note: Many of the same characteristics that lead children on the spectrum to be extraordinarily picky eaters can also lead them to be resistant to potty training. In particular, sensory issues and anxiety over new or different experiences can be particularly vexing. These issues then can lead to challenging behaviors as the child attempts to escape and avoid the bathroom if he sees this as the cause of his/her anxiety and fear (Click here to further explore those concepts in Part 1 of Picky Eating.)

Another commonality with picky eating is a feeling of powerlessness over this issue. You cannot make a child control these bodily functions even if you are quite positive she has the ability to do so.  But keep in mind that control of bowels and bladder is a somewhat complex function. Most of us realize a child must have ability to understand that waste belongs in the toilet, and then be able to connect the sensations he feels with the necessary steps to make that happen.  Effective and efficient control of elimination requires the maturation of the nerves between the brain and the sphincter/bladder muscles. Since ASD’s are neurological disorders resulting in pervasive developmental delays, it can be assumed this control may be (and probably will be) delayed as well.  
It is difficult to tell by simple observation how neurologically developed one’s child is in this area, so we have to play detective and take the best steps we can to move forward. As with all other areas of life for the person on the spectrum, schedules and routines can become the surest path to independence. Getting a child on a regular schedule, sometimes called habit training, can get hi very near the goal of independence and at the very least dramatically reduce the number of diaper/ pull-ups that get soiled.

But habit training requires rigid scheduling; not only trips to the bathroom, but also times and quantities of food and drink (for health and safety, avoid excessive restrictions or pushing more than 8 -10 glasses per day). For some, watching the clock just doesn’t fit their active lifestyle or family dynamics, so it may be better to strive for more naturalistic routines such as going upon waking, before or after meals, leaving or arriving home etc..  Communicating this effectively, as with a visual cue or part of a schedule, is also critical. Facilitate cooperation with the routine by following it with a preferred activity.

Ensuring adequate fiber is also important. Given the challenges so often faced with eating, using fiber supplements, from gummy bears (not the candy) to natural fiber powders added to a favorite shake or smoothie may be the kind of creativity required to ensure they are getting the amount of fiber needed for more regular bowel movements.  If constipation is an issue for your child, your challenges will be compounded by the irregularity of experience and the all too common pain and discomfort the child will associate with it.
The beauty of habit training is that is can be started regardless of the child’s level of neurological or cognitive readiness.  As long as they can sit upright and have the ability pull pants up and down (a step you may need to teach) you can begin. To this end, be mindful of the clothing so that the person is not hindered by tight fitting garments or difficult buttons.  If the person is also showing signs of awareness of the elimination sensations or discomfort with being soiled (something which can be aided by special diapers that turn cold when wet) then it is imperative to begin training so that the window of opportunity is not lost.  It is all too easy for folks on the spectrum to learn that “This is just the way it is and what I do” (or don’t do as the case may be). Communicating the need to learn this skill through books, social stories or videos can be a critical component of your plan. If your child is past this point, do not give up, just recognize that with all you will be teaching, there may be some ‘unlearning’ that needs to be done as well.

 Immediate success may not result with habit training but your initial goal is to establish familiarity and routine. The results from a regular schedule of meals and fluid intake may take time to translate into regular elimination patters.  It is also true that for many, the erratic appetites and eating patterns that have persisted will be a significant obstacle, but again success should not be expected overnight and persistence with maintaining a routine will, over time, help both eating and potty training. It goes without saying that what goes in determines what comes out!
But there are many who have reached the point where the child fears the bathroom. Sometimes power struggles occur, and can leave folks feeling defeated. If this is where you find yourself, take a bit of time to ‘back off’ temporarily and only work on the food and fluid intake (on as close of a schedule as you can) for a few weeks, longer or shorter depending on the severity of the anxieties  or power struggles that have developed.
Once you have both relaxed a bit, it may take a bit of creativity to make the bathroom a safer, more inviting place – if your child enjoys bath time, maybe during your break you can begin to play some favorite music (not too raucous if it is before bed time). Once you are ready to return to the bathroom for elimination, maybe play a different favorite tune. You don’t want the child expecting his bath just because he hears his favorite song- but you want him to view the setting as relaxed and comfortable.
You might need to do this in stages, in ABA terms you may need to shape his behavior, gradually getting him comfortable in stages until he is IN the bathroom and ON the toilet. In addition to the music, offer a few books or whatever it takes to get him to relax, but not so engaging that he focuses too intensely on the item. These items can be also a useful bridge for assisting the child to use the bathroom in new and unfamiliar places.  For many, the seat itself can be a major obstacle. Too cold, hard or large can make the child fearful of just sitting on the toilet, so consider a soft seated insert. Offering a foot stool so feet do not dangle can help with stability, comfort and aids in sphincter control as well.
Remember also that when teaching the routine, it is necessary to teach all of the steps, in sequence, ending with hand washing -also a multi-step process that can be aided by the use of a step by step visual.
A word of caution with regards to flushing – some children love to flush and this can be a natural reinforcer for the finished task. Be sure all the other necessary steps have been completed before she is allowed to flush or inappropriate routines may easily become established.  Others however, find the noise and swirling water frightening. If this is the case, structure your routine so that hands are washed and the door is open before the flush takes place and an immediate escape can be made, but all the necessary steps have been followed. Remember that what you do for the child now will be learned, and unlearning it later will be a greater challenge than finding a solution or teaching an adaptive skill now.
Also – restrain yourself from rejoicing in your success until the child has fully finished emptying his bladder or bowels. Shouts of “Hurray!” can stop the child midstream and lead to accidents a short time later. Too much enthusiasm can also scare the child if it is too loud and startling, and leading to refusal or resistance in the future.
While no discussion of potty training would be complete without mention of sticker charts or some other reinforcement, it is important to note that rewards only provide motivation and are ineffective when the necessary skills and neurological development are not also in place. In addition, making sure the person understands the connection between completing the task and obtaining the desired item is critical and not always as obvious as we may think. Finally, they are only effective if the item is truly desirable. Sticker charts often fail because stickers are not that exciting for some of us and even if they are building to a really great reward, the payoff may be too distant and perceived as too unattainable to be effective.  This is not to say that a reinforcement system should not be used, but only to caution you to the reasons why they often seem to fail. If you are confident that motivation is your missing link, but your reward system just isn’t working, tweak it a bit. Something more immediate – such as access to a preferred game or activity) might be better than stickers that build to a big and exciting reward.
While we have only scratched the surface on a number of issues, the West Virginia Autism Training Center library has some excellent resources. One of the best on this topic is Maria Wheeler, M.ED. ‘s Toilet Training for Individuals with Autism and other Developmental Disabilities. Her book goes into greater detail than is possible here and WV ATC has multiple copies.  If you are struggling with this issue or see it looming on the horizon,  take some time to develop a plan and prepare yourself for a few setbacks – numerous factors can contribute to those and should not, in and of themselves,  be interpreted as a failure or be cause to abandon an otherwise well considered plan.  As with everything else related to teaching your child with Autism, patience and persistence mixed with some understanding and creative problem solving are your keys to solving this puzzle.

May 18, 2012

Leaving The Nest: Tips For Transitioning Into Higher Education

Rebecca Hansen is the Program Coordinator for the College Program for Students with Asperger's Disorder, sponsered by the West Virginia Autism Training Center and located at Marshall University. The college program has been in existance since 2002 and has experienced tremendous success in supporting students with ASD as they earn a college degree.


“Planning is bringing the future into the present so that you can do something about it now.”
~Alan Lakein

Everyone has their own, unique comfort zone, and that comfort zone can come in a variety of forms: a cozy couch, a weighted blanket, a computer screen, or the presence of a friend. Transitioning out of one’s comfort zone, and out of the routines one has established into another activity or stage of life is challenging for everyone. It can be especially challenging for students with Asperger’s Syndrome.

New teachers, new routines and new expectations can bring increased anxiety and stress. And although one can’t plan for all contingencies or anticipate all possibilities, plan we must. A plan – and practical, repetitive practice carrying out that plan – can serve as a strong foundation for when uncertainty and stress enter the picture.
The College Program for Students with Asperger’s Syndrome at Marshall University has been helping rising high school seniors with autism spectrum disorders plan their transition out of high school. For the past five years this 5-week summer program has supported students as they learn to navigate the new lifestyle of higher education, and provides them with an invaluable experience that ultimately eases the transition into college.  Participants learn to effectively manage stress, live more independently, balance free time, advocate for their needs, develop new friendships, and begin building an academic and social reputation necessary for a successful college experience. 
For the past ten years, The College Program for Students with Asperger’s Syndrome has been supporting students as they work towards earning a college degree.  A full-time college lifestyle brings its own challenges of time management, organization, independent living skill development, and decision making.  Having a team of mentors who understand and appreciate culture and needs of individuals on the spectrum can provide a comfortable nest in which students with Asperger’s Syndrome can thrive. Having a mentor to help organize activities and deadlines into a workable plan, be an emotional support for inevitable challenges, help explain unpredictable events and teach  skills necessary to live and work in today’s changing society is an important relationship to establish and maintain during the transition into adulthood. 
Everyone needs support from others.  Leaving the nest is scary. But knowing what to expect, and having a plan in place for when things don’t go according to schedule, can help students with Asperger’s Syndrome be better equipped to live a more independent life.

Below is a list of tips that may be useful during times of transition:
Tips on how to prepare for the transition from high school into college:
1. Begin taking your medication independently.
2. Learn how to use a cell phone and send text messages.
3. Use an online planner to schedule important deadlines/appointments.
4. Organize your bedroom into a dorm-like setting, having a laundry bin, etc.
5. Visit family in other states to learn how to travel independently.
6. Take more responsibility in family chores such as helping plan for and prepare meals.
7. Learn how to balance a checkbook and manage money.
8. Visit several universities and meet with disability support staff to see what resources are available.
9. Take the ACT/SAT with accommodations.
10. Contact your local Division of Rehabilitation Services to see what financial supports are available to support your transition into higher education.
11. Apply for financial aid and seek out scholarship opportunities.
12. Visit your family physician or psychiatrist for medication refills and maintenance.
13. Take ownership of your goals for life after high school and set a plan to reach them.

Tips on how to prepare for the transition into adulthood:
1. Begin volunteering in your community.
2. Try to balance your schedule by incorporating time to have a part-time job.
3. Establish relationships with individuals in your chosen career field to make connections for future employment.
4. Start a professional wardrobe to have ready for job interviews.
5. Meet with career counselors to build a professional resume.
6. Participate in mock interview sessions.
7. Take career assessment tests.
8. Learn and practice effective communication skills to establish good relationships with co-workers and administration.
9. Identify and practice healthy ways to manage stress and learn how to respond to personal set-backs.
The motto of the College Program is “The Sky’s The Limit,” and with effective planning, and proper supports, it truly is.

April 20, 2012

ASD and Self-Advocacy

The following is written by Andrew Nelson, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. In this article Andrew discusses self-advocacy and provides resources and information that may support individuals in learning this important life skill. Please click on words or phrases in blue below to be linked to websites about that topic.

Self-advocacy is a natural part the human experience and people have and continue to speak up for their wants, needs, and dreams.  Communities come to know what a person values through their active self-advocacy and healthy change can occur through the interaction between self-advocates and the broader culture.  Historically, the voices of people with disabilities have been squelched by systems.  Through brave self-advocacy and partnerships with supportive allies people with disabilities have gained much ground when it comes to determining positive futures.

Sometimes individuals on the autism spectrum experience intense roadblocks to self-advocacy.  Communication, social, and sensory challenges can make speaking up for wants and needs extremely challenging.  However, this does not mean that people with autism do not have intricate desires for their lives.  One only has to watch the video “In My Languageto realize what dangerous assumptions can be made about a person with communication, social, or sensory differences.  Helping our friends with autism develop their own self-advocacy styles and skills will help them effectively direct their lives in spite of the biases or assumptions of others.

 Individuals with autism have been working cooperatively to help one another develop self-advocacy skills and partnerships.  Organizations like AUTREAT , AASCEND , the Autistic Self-AdvocacyNetwork and the newly-formed Autistic Global Initiative have made self-advocacy the central focus for individuals with autism and the “culture of self-advocacy” is finally beginning to permeate into the systems supporting people with autism.  Sometimes the phrase self-advocacy tends to conjure images of activists marching on governments or speaking in front of large committees to make or change laws.  This is only one of the many forms of self-advocacy.  In fact, a person telling someone what they would like for breakfast is also a form of self-advocacy!

Generally speaking, when attempting to assess a person’s self-advocacy skills we tend to look at 3 indicators: self-awareness, competence, and autonomy.  The following definitions were co-developed with Valerie Paradiz, Ph.D.  Self-awareness refers to an awareness of one’s sensory experience and needs, social tendencies, strengths, interests, and general way of being (also includes awareness of legal rights and entitlements).  Competence refers to evidence that an individual has tools and strategies to effectively navigate disclosure and advocate for accommodations, according to his/her preferences, interests or strengths.  Autonomy refers to the ability to advocate for accommodations in a variety of settings and situations, disclose to protect or foster oneself, use strengths and interests to integrate into cultures, and understand when to assert one’s rights. 

Each person on the autism spectrum will have different levels of self-awareness, competence, and autonomy.  These indicators provide critical information about what supports are needed to achieve greater success in self-advocacy.  For example, a person may not be aware of her senses as being separate inputs or as having a specific label.  She may lack strong sensory self-awareness.  Teaching lessons can be designed to give each of her senses a name or picture and connect real world smells, sights, sounds, textures, etc. to those sensory names or icons.  Once she understands that olfactory or smell experiences are connected to her “sense of smell” she can hopefully recognize and pinpoint those smells that are problematic.  Hopefully, she can then self-advocate more effectively by communicating “that smell is bothering me, can we make a change”, resulting in more competence and autonomy as well.             

 The importance of self-advocacy was recognized in the past, however there were limited resources to help teach self-advocacy skills and teach allies how to support self-advocates.  The Integrated Self-Advocacy Curriculum, by Valerie Paradiz, Ph.D., is a comprehensive curriculum that addresses both of those needs.  Eleven different units are presented which range from preparing to participate meaningfully in an IEP meeting to understanding the skills needed to manage disclosing one’s diagnosis to others.  The ISA Curriculum has both a Teacher and Student manual, making it extremely user-friendly.  One unit is dedicated to teaching individuals how to conduct an ISA Sensory Scan.  Individuals learn to scan the immediate environment to identify potential sensory challenges and then develop self-advocacy plans and scripts to address the issue.  It is incredible to see people discover they have a degree of control and say in environmental factors that had been difficult in the past. 

 The state of West Virginia has an active self-advocacy community.  Groups like People First of WV and The Arc of WV are helping to develop a strong network of self-advocates across our state, and individuals with autism are shaping that network.  Also, the WV Developmental Disability Council offers a class called Partners in Policy Making which helps adults with developmental disabilities and parents of young children with developmental disabilities become familiar with the policy making and legislative process at the local, state and federal levels.  On June 14th the WV DD Council is also sponsoring a WV Youth Self Advocacy Conference. Our state has a well-respected self-advocacy community, as was evident at the recent Allies in Self-Advocacy Summit in Baltimore, MD, and those of us in or supporting the autism community should network in earnest with other self-advocacy stakeholders in WV.     

Finally, the WV Autism Training Center offers a variety of services and the self-advocacy of people on the autism spectrum is central in our initiatives.  Individuals with autism are encouraged to share their dreams and goals during person-centered planning meetings, actively drive their college experiences, lead school meetings, direct their education at IEP meetings, co-train others in their communities, communicate their preferences, and express themselves as freely as possible.  We strive to creatively and compassionately support people on the spectrum as they pursue a life of quality.  

March 16, 2012

Sleeping Strategies for Individuals with ASD

  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 support individuals with ASD in improving their sleep experience.

Many parents and caregivers express concerns over the sleeping habits of individuals with ASD. In my experience those concerns often focus on: the number of hours asleep, the timeframe for falling asleep, sleeping too much throughout the day, not sleeping throughout the night, and assisting the individual in learning to sleep in his or her own bed.

Research suggests sleep problems exist for 44% to 83% of individuals on the autism spectrum, so families that express concern are far from alone. The most common reported sleep problem is Insomnia, which can result in prolonged time getting to sleep, a later bedtime, decreased amounts of sleep, an early wake time, and increased amount of awakenings during a normal sleep cycle.  Sleep disordered breathing, arousals from sleep with confusion or wandering, leg movements and daytime sleepiness are other commonly reported problems.

It is important to address sleep issues with individuals on the spectrum; difficulty with sleep can affect daytime behavior, contribute to difficulties with attention, and result in increased anxiety and stress. Following are strategies that may be helpful in supporting a better sleep experience for individuals living with ASD:

A Consistent Bedtime Routine
The best approach to reducing insomnia is to develop a consistent bedtime routine. This routine should be between 20 and 30 minutes in length and occur during the same time each night to help synchronize sleeping rhythms.

Some individuals may get a “second-wind” before bed time and have trouble getting to sleep if it is too early. If it takes more than an hour to get to sleep, try adjusting the bedtime by 30 minutes to an hour.

Keep a steady wake-up time, even if the person sleeps later than usual. Keeping a regular wake-up time will improve the quality of sleep and help maintain developed sleeping rhythms.
To assist sleeping in daylight hours, make sure the room is dark. Open curtains to allow natural light in during morning hours to help with wake-up.

To reduce the amount of stimulation and help calm the body and mind, avoid activities centered on the computer and television one hour before bedtime. Use that final hour to practice self-help skills, complete hygiene activities before bed, or read a story together.
Assess the environment for the sleeper. For example, is there need for a night light? Would a white noise machine be helpful in reducing the effect of other sounds during the night? Is too much light entering the room? Is the blanket too light to be felt or too heavy and warm? Would a weighted blanket help the individual fall sleep?

A visual support, especially one that uses text and pictures to display different steps in the bedtime process, can aid in building independence around the bedtime routine. This type of support will help reduce the need to constantly prompt for the next step in the routine and allow the individual to know exactly what is required and how many steps there are in the routine. An excellent example of a visual bedtime routine schedule can be found at this link, which takes you to the Autism Speaks document: "Strategies to Improve Sleep in Children with Autism Spectrum Disorders."

If night waking occurs, avoid actions that may look like play to the sleeper.  Enter the room and simply state: “back to bed”. Reinforce this desired behavior of sleeping through the night with a reward in the morning. Keep track of how many hours the individual is sleeping through the night so that both of you are able to observe progress. Changes may be slow and it can be easy to overlook small increases in sleep consistent and reliable data.

Teaching Individuals to Sleep Alone
Adults and children typically wake up for brief periods several times each night to assess the sleep environment and then quickly fall back to sleep. If the individual with ASD cannot fall asleep alone, he or she may visit you for assistance during the night when these awakenings occur. As a result, both of you may feel less rested in the morning.
It is, therefore, important to fade the supports you are using that involve your physical presence, such as sleeping in the bed next to a child or letting a child sleep in your bed. This can be accomplished gradually over a few weeks by fading your physical presence with the child. For example, if you usually lie down on the bed with your child, you would fade to sitting on the bed, then in a chair next to the bed, and slowly move the chair towards the door over the period of a week until you were out of the room.

Allowing a child to use a bedtime pass may also be useful. This is an object or card that can be exchanged (for a hug, a kiss, a drink of water, time with a parent etc.) one time during the night. You can supplement this with a reward strategy for not using the pass, such as gaining a sticker or smiley face for every unused pass and earning a trip for 5 smiley faces.

The Use of Medications for Sleep
Some consider using medication as a sleep aid when behavioral strategies have been unsuccessful. The decision to use medication is a highly pesonal one, so it is important to consult with a physician about the possibility before medication is used. If the decision is made to use medication, it is important to pair the use with behavioral strategies, and to discuss with phsyicians the idea of starting doses at the lowest therapeutic level, as individuals with ASD may be less able to communicate effectively any side effects they may be experiencing. A Melatonin supplement has been used successfully to treat insomnia in individuals with autism; a dietary supplement, Melatonin is easily available and has few side effects.
That being said, there are no medications approved by the Food and Drug Administration (FDA) for the treatment of pediatric sleep disorders, illustrating again the importance of a consult with a medical professional. 

A Personal Perspective
Embedded below is the video: Insights from an Autistic: Insomnia & Sleep Problems. The video narrator provides insight into why he experiences challenges with sleep, and offers tips on how to overcome those challenges. While these insights and specific tips may not apply to everyone, they reinforce that consistency and a method to reduce anxiety are integral to success.

January 31, 2012

Video Modeling

The following is written by Luke Walker, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Luke discusses using video modeling to teach skills to individuals with ASD.

Just what is video modeling?

Video modeling is a way of providing a visual to help explain a situation, provide rules, routine, teach a new skill or display important information. It can provide a model to the viewer of how a skill is completed or what a new environment will look like. Individuals that already enjoy watching videos, have basic imitation skills and are visual learners can benefit greatly from a video model. It is a very non-invasive way of teaching new skills and behavior.

Video modeling is based on the principle that many of our behaviors are learned from watching and imitating others. By watching someone who serves as a model, individuals may learn skills needed to obtain a goal or achieve an outcome - and then they  may act as a guide to another observer!

Video models are often an excellent fit for individuals with autism spectrum disorders as, typically, computer time is reinforcing, visual learning is often preferred and videos can be individually tailored.

Step 1: Planning

The first step for creating a video model is to plan exactly what you are going to teach the individual. Choose a behavior that is purposeful and meaningful to the individual. Define the behavior you wish to see, e.g. “Fred will brush his teeth before bed."

Choose the most appropriate type of video model you will use for the individual. Who will be the model? Will there be music or narration? Can you use pictures to supplement the video?
Next, break down the skill into steps and plan each different “shot”. Will there be a script for the model to read or actions to perform? What will these be?

Step 2: Filming

Record the video following the steps of the skills you planned earlier. Record several “takes” of each step and don’t be afraid to record more than you need. This will help with editing the video later. Be sure to keep the original footage in case you wish to make changes later.

I personally use a flip video camera for all of my video models. It is easy to quickly record and the image is often bright even in low light situations. I import it through the flip video software when I plug the camera into the computer, onto my hard drive.

Step 3: Production

Import your video into an video editing software so you can edit and trim the footage to remove mistakes and prompts. I use Windows movie maker for my video models as it is quick and easy to splice together a series of short video clips, loop, add music or narration, text to the screen and a number of other handy features. You will need to convert the video from the flip share program using the options to share it on media sites like youtube and Facebook. Follow the prompts and there will be a choice to allow you to save the file to the hard drive.

You want the video to show the ideal skill demonstrated without help or prompts. Be aware of how long the video is and whether it is suitable for the learner or not. A short video that loops could have more impact than a 2 minute video with many steps. At this stage add a title, text to the video and credits. Personalize the video for the individual so that they can take ownership and excitement in it.

Step 4: Show time

Some things to consider once you have finished your video:

How will it be watched?
  • Will you have a computer easily available or a DVD player at home? At school?
  • Is a portable DVD player suitable?
  • Ipad/Ipod/Iphone?
  • Upload a secure video on a video sharing site?

When will it be watched?
  • A set schedule each day?
  • Directly before the time the skill is to be performed?
  • When needed to correct the learner?
  • Can it be shared with parents to be shown at home?

5) Review and tweak

Assess whether the video is improving the skill by taking more footage of the current skill level and comparing to the original footage. Is the individual able to complete more steps than before? Are fewer prompts required? You could show the video and then test the learner 3-5 times at the skill and record the results to see if there is an improvement.

If positive results are not seen adjust the intervention.

  • Increase the number of viewings
  • Increase video loops
  • Change medium
  • Show video at different times of day
  • Prepare visual prompts from video to aid follow-through.

Be as creative as you wish with the videos you create as long as you remember to personalize them to the individual. There are many different factors to consider and many different decisions to make when creating a suitable video model so get to know the individual’s preferences, preferred learning styles strengths and weaknesses as you plan the video.

Here's one example:

January 10, 2012

Beginning The Search For Best Practice Interventions For Individuals With ASD

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

Many of the same questions are asked by parents soon after their child has received a diagnosis on the autism spectrum:

Where do we go from here?

What do I do next?

What is the best course of action for my child?

There are answers to those questions, although finding answers to fit the individual needs of a specific child isn’t always simple. The Internet can provide a plethora of information, suggestions, and potential answers. Google "autism therapy" and 32 million hits are found!

How can any one person or family sift through this sea of information?

Fortunately, there are specific therapies that are accepted as best practice for autism. Therapies with this label are considered the best of all available treatments to significantly make a difference. In addition, best practice methods are scientifically sound and empirically tested. Many different scientists, professors, therapists, and other professionals have proven through research that these therapies make a significant difference in the lives of individuals diagnosed with an autism spectrum disorder.

So, what are these best practice therapies? This article will cover some of the better known interventions.

The most well-known of these is Applied Behavior Analysis, or ABA. ABA is a systematic and scientific approach to understanding how behavior is affected by the environment. Through data collection, observation, and interviews of family and teachers, the ABA method allows for a hypothesize to be formed regarding the function of maladaptive behavior; then that hypothesis is used to create an intervention to reduce the challenging behavior. For instance, Sally may often scream out in class at what appears to be random times. After collecting data and observing Sally’s behavior, her teacher notices that the screaming occurs mostly during group instruction but not during one-on-one instruction. As a result, she decides to ignore Sally when she screams out but praise her when she raises her hand. Soon the teacher notices that Sally is hardly ever screaming out during group instruction.

ABA is sometime confused with Discrete Trial Therapy, or DTT. DTT is a type of ABA therapy and it is best associated with the research of Ivar Lovaas, who had success utilizing DTT interventions to teach skills to children diagnosed with autism. DTT can be utilized to teach a child each of the small steps involved in learning a skill in a systematic manner repeatedly to gain mastery. For instance, Billy is learning how to follow directions, so his teacher starts with one-step directions. While sitting at a table one-on-one working together, the teacher says “stand up,” and waits for Billy to respond. At first he needs some help with understanding her request, so she prompts him physically to stand up. After a few more attempts with this specific instruction, his teacher is able to fade the prompts to simply a gestural prompt. Eventually, Billy is able to follow the direction numerous times successfully with his teacher and mother. This skill is considered mastered and his teacher moves on to the next direction and eventually to two-step directions.

Because Billy’s teacher is very well educated about Autism and ABA, she also knows that she must utilize Natural Environment Training, or NET, to truly master this skill with Billy. NET is similar to DTT but takes place in a more unstructured fashion. This helps Billy generalize the skill he has learned across multiple environments (instead of just the table) and people. For instance, now that Billy has mastered the skill through DTT, his teacher may begin to give the direction in the lunchroom, at circle, and at other appropriate moments, or ask other adults at school to also give the direction to Billy in order to generalize this skill into real world situations.

Another best practice technique is Positive Behavior Support, or PBS. PBS grew out of ABA from a desire to be more person-centered and antecedent-focused. PBS utilizes the same behavioral principles established within ABA with the understanding that it is important to focus on improving the individual’s quality of life, creating interventions that mesh well with the family’s value system, and focus more on preventing the things that happen before the behavior (the antecedents) rather than using consequences to reduce the behavior. For instance, if Timmy has been hitting his classmates and a functional behavior assessment (FBA) revealed that he did this in order to get attention, PBS would focus more on teaching Timmy to request attention in a more functional manner, such as using verbal speech, PECS, or sign language instead of using a consequence strategy such as Timmy loses 5 minutes of recess every time he hits another student.

There are some other interventions and techniques that were not discussed within this article that are considered best practice,and perhaps we will cover them in a later article. However, it is very important to understand whether a proposed intervention or therapy is considered “best practice” before beginning treatment. This link leads to a document that includes an evaluation of many common interventions for individuals diagnosed on the autism spectrum. The National Professional Development Center On Autism Spectrum Disorders also provides detailed information on best practice methods and guidelines. That site can be accessed at this link.

It is  important to refer to guides such as these so that everyone can be a knowledgeable and responsible consumer. Additionally, it is important to ensure that a variety of the “best practice” techniques is utilized with each individual to ensure skills are learned and generalized across environments and that the individuals life is one of quality.