Your Opportunity: The Freshman College Experience

This post is by Autism College’s  first guest blogger,  Kerry Magro, who was diagnosed with PDD-NOS at age four. Now as an adult who has autism, he is a recent graduate of Seton Hall University’s prestigious Leadership Development Honors program, majoring in Sports Management. In 2008 as a college sophomore he started the first Student Disability Awareness club in Seton Hall’s history to help spread awareness and raise funds for those affected by autism and other disabilities.*

Here’s the scenario: You’re a college freshman. You’re on your way to THE higher learning experience of a life time. There is a catch though. As an individual with autism going into college you are in a distinct unknown class which is both good and bad. If you look at some websites today you may see how many people go to college from a certain race/demographic. With a learning disability though, especially autism, we don’t know the numbers of who’s going to college today and who’s not. What we do know is that an estimated 500,000 people with autism will become adults within the next decade. This means that your story, through your college experience, can inspire so many.

With so much still unknown it means that many people are still unaware of autism at the college level. Granted some programs know what they are doing, many still have a very long way to go. I can tell you though my life has changed so much because of my college experience with autism. When I was 4, I was diagnosed with pervasive developmental disorder- not otherwise specified (PPD-NOS). Almost 18 years later I made my dreams come true by receiving a diploma from Seton Hall University. I went through so many challenges to get there but because I faced those challenges I’ve become a stronger individual by far. Because of the uncertainty, it’s how you prepare now which will ultimately be all the difference in your college experience.

So where do you start? Many of the steps are very basic and most of them involve just one word which awareness. The steps that I tell people through a few blogs I’ve wrote is broken down into these…

  1. Making sure you understand who the faculty members are for your program (director, disability specialist, etc.)
  2. Understanding what accommodations they offer (extended time on tests, private rooms for exam periods, individual note-takers, etc.)
  3. Finding out if there is a disability support student organization (important in regards to making sure students have a “voice” and community that can promote acceptance and diversity).

Ideally these steps will put you ahead of the game. Still you will need to have a strategy for how to assess your Individualized Education Program (IEP) in College. I was the unfortunate soul who realized 2 weeks within college that I no longer would have an IEP. No one ever told me that my IEP would be stripped away, even during my exit interview. As I know this is August you can’t just go back to High School and do this but I would take any and all notes you have from your exit interview from High School and assess where you are as a whole. Find out what your strengths and weaknesses are and then after you figured that out what accommodations they offer (step 2 above). I would suggest doing all of these steps with a parent/guardian as well to make sure you don’t miss anything while going through the trials.

Other Mentions I usually tell people are:

  • Prepare to self-advocate. Many schools will make you sign a paper before they let parent involvement happen and even then they push independency.
  • Figure out whether you would feel comfortable living in a college dormitory. With proper documentation, you can ask for a single room to make your transition easier!
  • Speed Reading Courses (many are available at college institutions for students of all ages around the U.S.! You can also look for online video instructions, such as the one here)
  • Asking for a learning buddy (an upcoming sophomore to help show you the ropes)
  • Maintaining healthy reading and exercise habits (30 minutes a day for each) to keep the mind sharp in the summer
  • Reaching out to local and national autism-related organizations (such as the Autism Society and Autism Speaks) to talk with experts in regards to self-help and support groups.
  • Buy a SMARTPEN!

Finally, my last word of advice is to have fun! Many people say college is the best time of your life and it really can be if you let it. Remember, autism can’t define you, only you can define autism. At the same time PLEASE remember to give back. As I said, you’re voice is the key to our autism movement. So many famous people with autism today are much older and to promote forward progress we need new generals and new voices to come to the front and join in. Because Autism in college is still unknown a college education could very well be that first step…

* If you would like to contact Kerry  directly about questions/comments related to this post, he can be reached at his Facebook Fan Page or at kerrymagro@gmail.com. Please feel free to read his other college post which references some of his work in this post from The Autism Society of America here  (scroll down the page) along with his Autism Speaks college blogs here.

Autism Life Skills: 10 Essential Abilities for Children with ASD

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

How To Find Your Strengths When You Aren’t Sure What They Are

By Brian R. King LCSW

This is the third of a ten part series I have decided to put together especially for you. I hope these lessons will serve as a road map of sorts on how to be on the Autism Spectrum and have a successful, happy life. So let’s get started . . .

Step 3: Acknowledge Your Strengths & Live Them Every Day

Are you ready to take a break yet? The first two lessons in this series required a lot of in-depth thinking, they really asked you to take a look at yourself and the way you think. So let’s take a break from that approach and be a little more straightforward for this lesson. This lesson is all about finding your strengths.

Now for those of us on the autism spectrum, we’re so used to being criticized and so used to having difficulty that it’s much easier to think that we have more weaknesses than we ever will have strengths. It doesn’t help that those who are looking to support us also have a tendency to emphasize our challenges instead of our strengths. They do this by emphasizing that we work diligently to overcome our weaknesses instead of living from our strengths. Now before you scream, “I DON’T DO THAT” at your computer screen, please bare with me and I will explain.

The obvious problem with emphasis on reducing or eliminating weaknesses is that you only get to develop the things that you give your time and attention to developing. So how do you learn to discover and develop your strengths with so little encouragement to do so?

What Makes Me Confident?

It is in living from our strengths that we have the greatest likelihood of experiencing a feeling of competence and success more often. It’s the experience of competence that is at the heart of our feeling of self-worth.

So by giving so much attention to our weaknesses you’re reinforcing the experience of incompetence and lack of success over and over each and every day of our lives.

We often talk about the need for balance in life, and this is critical in helping someone on the spectrum develop their self-worth while remediating areas of challenge. There must be equal if not greater opportunity for spectrumites to experience their strengths and the value of those strengths. Our strengths serve the purpose of solving the problems of our own lives as well as helping solve specific problems in the lives of others.

What Makes Something A Strength?

Words matter, so let’s be clear what is meant when I talk about a weakness, challenge, or strength. I think of a weakness as something I’m simply not good at or am unable to do. My penmanship sucks and the physical act of writing is painful to do, so how much time and effort do I put into improving it before I fire up my Dragon Dictate software (which I used to write this article by the way)? Does it make sense to work on the writing or use my gift of speaking?

A challenge can be thought of as a problem that is difficult to solve but is within your ability to solve once you determine the strategy for doing so. A strength is knowledge or skill that you use to solve a problem either for yourself or another person.

In fact, when you get down to it the simplest measure of how independent someone is lies in their ability to solve the everyday problems of their life. The way you measure someone’s contribution to society as a whole, can be measured by their ability to solve problems for others. For example, when a person is hired to do a job they are hired to solve a specific problem for their employer. I hire an accountant every year to do my taxes because my math skills are mediocre at best. Therefore, I enlist the strengths of an accountant to solve that problem for me.

Can You Read This?

If you are presently saying to yourself, “But I don’t seem to be good at anything. I don’t know what my strengths are,” then let me make one thing very clear to you. If you are able to read this then you are literate and that is a strength. One of the reasons we miss the strengths that are so abundant and right before our eyes, is that once we learn how to solve a problem such as tying our shoes, looking both ways before crossing the street, reading, or something more complicated like preparing a meal, it can become routine.

My suggestion to you, starting today, is to bring your routine strengths back into your awareness. Ask yourself, “What problems did I solve today? If you’re having a difficult time determining what problems existed today just make a list of everything you did. If you picked out something to wear then you solved the problem of, “What do I wear today?” In fact, every time you ask a question you are stating a problem and when you answer that question you are offering a solution.

The Strength In The Details?

When it comes to solving problems for others, as always those on the autism spectrum are constantly reminded of the problems they cause others instead of the solutions they provide. Which is why I make an all-out effort with my sons to emphasize how their actions solve problems in my life. When they help around the house I thank them and I thank them specifically. I don’t simply say thank you or thanks for helping. I say, “Thank you so much for helping me put the dishes in the dishwasher so quickly. That saved me so much time that now I’ll be able to play cards with you.”

I help them discover their strengths by pointing out the specific problems they solved and the specific things they did to help me solve it. The specific skill they used is their strength. Whether it be an ability to organize (not my strength by the way), an ability to stick with the project until it’s done, a tremendous eye for detail or any other specific ability. Letting them know that they had the knowledge or ability needed to solve your problem is HUGE.  In doing so you emphasize how they are specifically equipt to solve a problem for another person and expressing gratitude for it.

Did I Miss Something?

How many of your day to day strengths are you becoming more aware of now? Are their strengths that you don’t give yourself credit for? The last question to ask yourself is, “How many of the questions you answered today, and the other problems you solved, were done so to solve a problem for another person?”

It is important to be aware of the solutions we provide and the contributions we make not only to the quality of our own lives but to the quality of the life of others. It is in making our contribution to society that we ultimately feel our self-worth. When we feel that our presence in the world each day solves more problems than it causes, then we feel more worthwhile, then we feel like we are important to this world. To feel   the opposite is to feel worthless, to feel like a burden. That isn’t a feeling anyone deserves to have, so please be very cognizant of whether or not you are encouraging someone in your life to emphasize their challenges and the problems they cause over their strengths and the problems they solve.

Just Do It Already

I am so grateful that over the years I have developed the ability to express myself in written and spoken language. Something I am very aware that differentiates me from many of my fellow spectrumites including one of my own sons. I utilize this strength to the utmost and will continue to explore new ways to use it to its highest degree. Today alone I received two inquiries to speak to different groups on working with those on the Autism Spectrum. Not a coincidence when you live from your strengths.

My many challenges include poor memory; poor organization, poor math skills and I continue to have difficulty in social situations. Seems like a longer list, but because I focus so much on developing the one strength that solves problems for myself and others here we are. I am able to articulate my experiences in a way to help other people gain insight into theirs. By choosing to do that instead of beating myself up over the other things I’m not good at, my life and the lives of those who enjoy what I write are a little better.

There is so much I could say on this subject, but I hope what I have shared gives you enough to seriously reconsider how you view yourself in terms of what you’re good at instead of what you aren’t. Hopefully you realize you have far more to offer yourself and even more to offer this world than you’d ever considered.

We’re all in this together.

Contact:

Phone Number: 630‐778‐3447

Fax: 630‐6893‐9004

Email: Brian@SpectrumMentor.com

Website: http://SpectrumMentor.com

 

Life Skill – Toilet training (For Children with Difficulties)

By Prof Eric Lim, Kits4Kids Foundation, August, 2009

Toilet training is teaching an entire new skill. Teaching new skills to children with autism spectrum disorders works best when the steps to the task are organized into simple pieces. Teaching must also be consistent at all times and become predictable to the child in terms of rewards and consequences. In order for toilet training to be successful, the child must move from depending on reminders (timed trips to the bathroom) to recognizing the signs of a full bladder and taking the necessary actions him/herself.

As parents we look forward to that time when our child is finally toilet trained. We expect our child to learn to use the toilet as part of the growing up process. Not every child is alike, some children are difficult to train and may make toilet training harder on the parent. Learning to use the toilet is part of socialization. Children become interested in training when they become aware that other children and adults use the toilet. They assume that using the toilet is part of being considered a “big boy or girl.”

Most children enjoy the recognition and gratification they receive from adults when using the toilet as well as the rewards that come their way. However, young children with autism have trouble applying the same social interaction reason to toileting. They also are being asked to change set routines and rituals and they also may not be aware of or able to control their bodies just yet.

Signs of Readiness

For children on the autistic spectrum, it’s recommended to look for signs of readiness. Signs may include the following:

• Awareness that he or she has wet or soiled, a desire to remove the wet or soiled diaper (pulling at it, taking it off, digging in it, and or vocalizing displeasure.
• Getting a clean diaper, or taking you to the bathroom
• Ability to imitate actions (sitting on the toilet)
• Responds favorably to some form of positive reinforcement (a learned behavior increases after you reward it with something the child likes)
• Stays dry/clean most nights

When to start toilet training a child with autism:

• Many children with autism train later than the average age. Many succeed at urine training before bowel training. Many take longer to train, some reports suggest up to a year to become dry and two years to become clean.

• Start toilet training when you can be positive and the child is able to: sit comfortably on a potty chair or toilet for a couple of minutes, stay dry for at least 60 minutes, is aware of being wet or dirty, is showing interest in other people going to the toilet, showing some signs of cause and effect, and is willing to cooperate. Be prepared for it may be a long learning process.

Communication Problems with Toilet Training

For children with a communication deficiency visual learning may be an appropriate way to teach toileting skill. Does the child understand language? Does he or she understand “potty”, “diaper”, “dry pants”, “toilet”, “bathroom”, or any other words, signs, or pictures/symbols that may convey the idea of toileting. Children with Autism may have difficulty understanding and associating words with actions and most will at least need more time to process what you say. Can the child express the urge or need to use the toilet? Expressive language is almost always a problem for children with an autistic disorder. It will be important to be able to read their cues and/or teach a way to express the need or urge to use
the toilet.

Special consideration for children with autism:

• A child with autism may not be able to communicate a need to go to the bathroom, therefore body signals from the child, routines, and visuals might be significant aides.

• The child with autism may learn to use the toilet at home and be unable to adapt to a new situation easily.

• A child with autism may have sensory difficulties such as discomfort by the hard toilet seat, being afraid of water splashing, or want to play in or watch the swirling toilet water.

• In public bathrooms children with autism sometimes fear the hand dryers, have problems with the doors, the way the toilet flushes, or any number of challenges.

• Having a bowel movement is often harder and occurs less often. Some children go off alone and squat, some insist on wearing the pull-up or diaper to make a bowel movement, some fear that it hurts, some smear feces, and others want to be clean so much that they react to getting anything dirty on them.

• Rule out any medical problems and account for fears that may have developed due to pain from constipation or urinary tract infections in the past.

Before you begin toileting make sure your child does not have a medical problem which would interfere with making toilet training a success. This can be ruled out by the family physician after a routine physical. Contact your physician if you notice any unusual signs like too much or too little urination, painful urination, urinates frequently or unable to hold urine. The same applies to concerns with stool. Children with Autism have a higher than expected rate of bowel problems (constipation or loose stools or both) and require extra care if this is the case.

Making Toilet Training a Success

• Before starting, keep a record for a few days, charting every 20 – 30 minutes whether your child is dry, wet, or dirty. Some diapers have a strip that changes color to make this easier. Chart periodically, maybe once a day each week after starting training to keep track of progress, problems, and tendencies.

• When you start training, prepare the environment with the needed equipment and remove extra distractions.

• Plan a schedule that will match the report you gathered. If you child usually stays dry for an hour, anticipate to take him/her to the bathroom about 10 minutes before. Try to match the schedule to the natural cycles of the day.

• Plan the routine that you will have your child follow and make a picture chart of that routine so that your child and everyone who helps him can follow it. Change the cue level by decreasing examples as the child achieves the skill.

• Watch for signs of readiness such as when your charting shows being dry for an hour, your child indicates in some way that she is wetting or soiling diapers, indicates in some way that she has soiled or is wet, regular bowel movements, or interest in others going toilet.

• Keep positive, praise attempts, praise being dry and clean, use reinforcement and give your child time.

• When your child has some success with understanding toileting help him/ her learn to indicate that they are going to the toilet with a sign, word, or picture or several of these. Children today often use potty, pee and poop, but signing toilet may work or a picture of the toilet may be helpful. Visual cues as part of your routine helps the child tell you when they have to go potty.

Visual and Verbal Cues in Toilet Training

• Give a visual and verbal cue –such as an auditory giving the child a buzzer or bell. Decide what verbal cue you will use such as go potty, go pee, or go to the bathroom. If you use a signs, pair it with the verbal cues.

• Enter the bathroom with the cue needed (verbal, light touches, taking the child’s hand, or more physical assist).

• Pull pants down to ankles with cue

• Sit down with cue

• Pee or poop or both with cues

• Get toilet tissue and wipe with cue

• Stand up with cue

• Wipe, if needed, and throw tissue in toilet with cue

• Pull up pants with cue

• Flush toilet with cue

• Turn on water and wash hands with cue

• Turn off water and dry hands with cue

Use visuals: For many children, having a picture of a toilet or potty chair as a cue to go helps. You might also make a picture schedule to sequence the major activities of the day adding the toilet pictures before or after these. Children have learned to go on their own in this way. The pictures can be laminated and put on with Velcro or inserted in plastic sleeves so you or your child can take them off or change the order. There are also videotapes about using the potty that some children with autism have reacted well to. Other parents have made videos for their child to watch, some have paired music with the pictures. Model for you child, use books and pictures sequences about going to the toilet. Visuals
help your child know what to do, remember what to do, and learn from the sequence.

Use imitation: Imitation is a type of visual. Many children with autism are delayed in their imitation abilities, but many do watch carefully to what is going on around them even if they don’t seem to immediately imitate. Watching someone close to their size use the potty may be useful, but it is helpful for them to see that going to the bathroom is something everyone does. Some children might respond to the use of a doll to go through the steps.

Teach privacy and modesty: Most young children undress anywhere and don’t care who sees them go potty. However, as they are approaching four years of age, they often begin to want more privacy. Children’s needs must be considered and children have to be taught what society expects. Consider teaching your child to undo and pull down pants only in the bathroom as well as pulling up and fastening pants before leaving the bathroom. Once your child is toilet trained teach him to close the door. Also you might want to consider teaching your child when and where he must
be clothed or covered and not naked. Teach them to ask for ask for help with bathing.

Use words that are appropriate: Some children with autism are constant with the words they heard when very young and will not change to more appropriate words later. However, if you are aware of the need to be age appropriate it usually works to use the words that everyone else of the same age is using.

Ideas for Specific Problems That May Be Encountered:

• Resists sitting or doesn’t sit and relax long enough: Encourage your child to sit with his/her clothes on. Make sure the seat of the potty chair or the toilet is comfortable to your child, maybe it needs to be softer, maybe lined with a diaper, maybe warmer, or maybe your child’s feet need to be more stable. Some children may need to have the hole on the toilet smaller and experimenting with various sizes of seats or even covering the toilet with a towel or cardboard may help. Give your child a reason to sit such as his special reward that he/she gets while sitting. Use modeling by sitting together or having a doll or favorite stuffed animal sit. Give the child a visual or auditory cue about how long to sit by a visual timer or the length of a song. Help your child relax while sitting by providing support for feet and body where needed and rubbing your child’s legs. Sometimes children are so tense that they can’t relax and go.

• Afraid of flushing or excessively interested in flushing: Encourage your child to play in water that swirls in other places than the bathroom and at appropriate times. Always let your child know when you are going to flush the toilet when he/she is in the bathroom. Gradually bring your child closer to the toilet by providing a place for the child to stand while you are flushing. When your child is ready allow him/her to flush and either run or stay and watch. Establish a rule that you only flush once then you are all done.

• Afraid of public bathrooms: stalls, hand dryers, different sinks, toilets that flush automatically: At first, it may be necessary to be aware of the public bathrooms you may frequent to know what is likely to cause your child problems. Some of these can be avoided like being far away from the dryer and not walking under it and practicing with soap dispensers and sinks that go on by themselves in a fun way. Protect your child from toilets that automatically flush since some splash a lot. The more you know about the quirks of the public restroom the more you can prepare you child. The handicap stalls are wider and more accessible many a sink next to the toilet.

• Playing in water or with toilet paper: Take the toilet paper off the roll and put it up until your child can master the use of it. Put safety catches on toilets until your child can understand that toilets are not places to play. Allow lots of water play in appropriate places and even swirling water to watch such as in “tornado bottles”. Lower water toilets aren’t as much of a temptation while sitting. Use tissues that are folded or pre-measured, a box of wipes, and folded toilet paper are helpful.

• Resists being cleaned or not wanting to be dirty: Sometimes smearing of feces begins by the child trying to clean himself. They may try to clean up then make a mess. For whatever reasons your child may be having trouble in this area it is wise to stay as calm as you can. Establish a clean up routine that is not especially rewarding, but is comfortable and quick. Make sure the wipes are big enough and comfortable enough for your child including temperature and texture. If your child gets some feces on his hand and is distraught help the child wipe it as soon as possible. Show the child that they can wash their hands clean with soap and water. Sometimes as children with autism grow older they become upset when something happens like a toilet overflowing or they get their hands dirty and react
out of proportion, so we want to assure them early on that this can be fixed quite easily.

• Fear of having bowel movements or constipation: This is a common problem for many children with autism at some time in their childhood. It may be contributed to by diet, not sitting long enough, not being able to relax, their activity level, or various other factors. It is helpful to help a child recognize that the grunting and squatting he/she is doing helps make a bowel movement and that is good. Many children go and hide in a corner to do their poop and resist a change. Help them move closer to the bathroom and perhaps identify where to squat by using a plastic mat as the spot. Gradually influence the action to the potty or toilet over time the child associates the grunts and pushes as signals.
A child may have to go in the diaper even while sitting for a while so try a diaper-lined toilet seat. If a child experiences constipation on a regular basis bowel movements may be uncomfortable and you may need to seek advice from you doctor.

• Trouble in standing while urinating: When your son is sitting to urinate and completely toilet trained or when he shows an interest in standing he may need help. A visual chart of how boys use the bathroom may be helpful. For example action pictures of a boy putting the seat up, standing while urinating and aiming in into the toilet. Sometimes boys do not want to touch their penis because they may have been told not to touch on some occasion. A male in the family may need to demonstrate how to point and aim. Something may be used for a target like a floating paper, a Cheerio, or colored toilet water.

• Regression in toileting: Sometimes a child who is fully toilet trained will begin to have many accidents. Evaluate changes that have occurred and what information or additional supports may help your child feel comfortable again. Some reasons regression may occur are after an illness, after a parent has been away, after a move, after starting school, after a baby has been born, or when going to the bathroom has been painful. Your child may be in a situation where he doesn’t have the skills to tell someone he needs to go and holds it too long. His supports may not be in place. Sometimes at school there is something about the environment or the schedule that is causing problems for your child.
Go back to all the original supports that worked and put them back into your child’s life while reassuring your child that he/she can and will succeed.

Consistency in Toilet Training

Your child can be toilet trained. However, training your child with autism will likely take more planning, attention to detail, and consistency than training typical children. (Remember that all children with autism are different and some are easy to train.) You have to organize the sequence and provide a schedule and consistency until your child understands how all this relates to his body functions. Keep your expectations realistic and reinforce your child for trying as well as for success, always reassuring the child that he/she will succeed and there is plenty of time to try, and be persistent.

 

Moving Into the World of Employment

Contributed by Cathy Pratt, Ph.D., Director and Chris Filler, Professional and Parent, Ohio from Indiana Institute on Disability and Community

Every three years, the Indiana Resource Center for Autism (IRCA) is legislatively mandated to conduct a needs assessment survey. As part of this survey, families are asked questions about topics such as insurance coverage, Medicaid waivers, impact of educational programs, interactions with the criminal justice system, and other relevant topics. The past two surveys have asked family members with children no longer attending school programs about the employment of their sons/daughters on the autism spectrum.

In 2006, the IRCA survey showed that 61% of individuals (over age 18) represented in the survey were unemployed, 14% worked in sheltered workshops and 25% worked in community jobs. Those who are currently employed work an average of 21 hours per week and have a median annual income of $6,516. This figure is troubling considering the dramatic increase in the number of those receiving educational services under the eligibility category of ASD, and the realization that this population will soon be entering the adult service system en masse. It’s also troubling because it illustrates the misunderstandings among many professionals concerning the realities and range of ASD.

Families advocating on behalf of their sons/daughters on the spectrum will come to realize that many adult providers have not received current and accurate information on autism. This lack of knowledge will impact eligibility and the types of services the person will receive. Below are 10 recommendations of information that adult service providers will need to know.

  1. Adult service providers need a thorough understanding of ASD, the spectrum and the diagnosis. It is not unusual for there to be tremendous misunderstandings about Asperger’s and those at the “upper” end of the spectrum. Often these individuals are perceived as being willful or manipulative. For those with more significant disabilities, there is a misunderstanding about the potential gifts and talents they may possess. Adult service providers must understand the complexity of ASD, and that there are no generalized services that will work for all. They must understand that ASD is neurological and not a mental illness or emotional disorder.
  2. Those with ASD require a creative and careful assessment process. Many people with ASD often have unique skills that are not necessarily obvious during a traditional assessment process. They may possess skills suited for a specific “niche” that could lead to successful supported or competitive employment. Identification of these skills often occurs through careful observation, interviews with those who know the person well (e.g., family members or the individual him/herself) and a longitudinal assessment process. Several hours of traditional assessment or a checklist of vocational skills often misses the person’s unique and most important strengths.
  3. Be willing to think “outside the box.” Traditional vocational programs are not always the most appropriate or successful. Vocational/employment programs, supports and services all too often seem to be offered in terms of available options, instead of what the person needs and is interested in doing. Due to some people’s narrow focus and need for functional routines, there are situations when all of the available/traditional options for employment are equally unsuccessful. Sadly, there are times when a person is forced into an inappropriate setting and fails miserably. Agencies may then conclude the person is unemployable, rather than searching for a job match that acknowledges skills and talents. Do not assume that the person with ASD that struggles with communication and socialization has that same level of challenge in all areas. In fact, assume the opposite! Many areas of skill will be significantly more developed than social-communication skills.
  4. Be aware of sensory processing challenges. These challenges often limit many with ASD if gone unrecognized and un-accommodated. The person with ASD’s perception and ability to tolerate or cope with the sights and sounds of a typical work environment can be quite different than that of their co-workers. Accommodations can be made and coping skills can be developed. However, this does not happen automatically, quickly or under threat of losing a job. In fact, the person will likely shut down or quit rather than deal with the situation or attempt to explain the difficulties. This does not mean that the environment needs to be silent or rigid. It does mean that opportunities to periodically leave a stressful environment should be available and without consequence. Environmental control or accommodation can dramatically change the quality and quantity of the work or product, while presenting the person in the most positive light.
  5. Build on strengths. This should be the philosophy when working with any person. However, the strengths of those with ASD may be less obvious and may be more narrowly focused than those of others that come to the attention of agencies that provide employment services. Rather than addressing deficits, opportunities should acknowledge strengths and interests, when possible.
  6. Prepare, prepare, prepare. Be certain the person understands what is to happen during the assessment, work site trials and work training processes. Some require visual supports to assist in this area. Others may need to visit and explore the environment. In some cases, a verbal description and explanation of the situation, schedule and expectation may be sufficient. However, always err on the side of concrete and visual supports.
  7. Communication should not be all talk. Fewer words often are better. People have a tendency to talk too much to folks on the spectrum, regardless of whether the person is verbal or not. They assume that a verbal person will be able to understand verbal expression equally as well as other employees. This is misleading as some with ASD may use many words, but have limited receptive language. Be prepared to use more written and concrete communication and directions. Develop schedules, visual sequences of tasks, and information about the written and unwritten “rules” of the work culture. Employers and co-workers should be aware that the words they say may not communicate meaning as much as environmental reminders and cues. And finally, realize that many of these individuals do not understand sarcasm, innuendos and double meanings. As a result, the directions that we provide may be confusing or meaningless.
  8. Consider carefully the environment and predictability of the job. Workshop-type settings often are the worst for those on the spectrum. These settings typically contain many people, loud noises, and a lack of privacy or a place to get away. Even the person that seems less capable may perform better in a community setting with support than in a sheltered setting. Intermittent employment may not be a good idea either. Seasonal, ever-changing jobs increase the likelihood of anxiety, stress and behavioral escalation. This does not mean to place the person in a boring or static situation. This does mean that the predictability and stability of the employment will go a long way in creating an efficient and successful employee. If the job is one that offers change, use environmental and organizational supports to create predictability and structure.
  9. Social expectations require instruction. Social challenges are a hallmark of the ASD diagnosis. These challenges extend beyond the school years and can dramatically affect the person’s ability to successfully integrate into a work setting. Be prepared to help the person understand the social expectations (“rules”) of the job. These often are “unwritten” or “hidden” rules of the work culture, and can be critical for acceptance. Do not assume the person will “read” the social climate and adjust. It will not happen. Instead, prepare the person by teaching expectations. Rehearse how to greet, ask for help, “small talk,” compliments, etc. The employer should be aware that if social errors occur on the job, these should be calmly addressed in a very direct manner. Subtle suggestions will not work.
  10. Systems must work together (delays can be deadly!). The traditional “hand-off” between school and adult services over a few weeks or even several months often ends in delays in service or employment, misunderstandings and even failure in achieving a successful outcome. Agencies must work with schools to identify students early, begin to actively work with the school team to get to know the student, and begin to identify adult services and potential employment. Timelines vary from state to state and agency to agency. Funding and eligibility requirements may get in the way of a smooth transition. It goes without saying that funding will always be an issue. However, agencies must begin to create opportunities to work together systematically so that the transition is “seamless,” or at least does not unravel all together.

One final thought for family members: As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities. An issue of the Autism Advocate highlights stories of success that occurred because family members pushed the system and expected a different type of future for their child. Hopefully, these exceptional stories will become common occurrences someday.


Pratt, C. & Filler, C. (2007). Moving into the world of employment. The Reporter, 12(2), 1-2, 13.

 

Free Q & A on Back to School Tips with Dr. Peter Faustino, moderated by Chantal Sicile-Kira

By the end of the summer, most of us parents are happy to see summer end knowing our ASD children will have routine and a schedule back in their lives (and so will we).  But  we dread the stress related to the start of a new school year.  There are ways to lessen the stress and help prepare both your child and the teacher for a new and hopefully successful new school year.

Autism College hopes to help this year by offering you a two hour free Q & A with Visiting Professor, Dr. Peter Faustino, school psychologist, moderated by Chantal Sicile-Kira. Both Dr. Faustino and Chantal have written on the topic and are looking forward to answering your questions and giving you tips to prepare your child, yourself, and the teacher for the start of a successful new school year! Whether your child is fully included or in a special day class there are ways to prepare and alleviate some of the stress of the transition from summer to school, especially when there are teachers new to your child or teenager.

Join Dr. Faustino and Chantal on Monday, August 22, 2011 from 6:00 to 8:00pm PST on the topic : Tips for Reducing the  Back to School Stress for Children with Autism, Parents and Educators.

Dr. Peter Faustino has been working as a school psychologist for more than 12 years.  He is currently the President of the New York Association of School Psychologists (NYASP).  NYASP – the state affiliate of NASP (www.naspweb.org) – serves children, their families, and the school community by promoting psychological well-being, excellence in education, and sensitivity to diversity through best practices in school psychology.  Dr. Faustino joined the Bedford Central School District in 2003 to work at the Fox Lane Middle School. Dr. Faustino also maintains a private practice with the Developmental Assessment and Intervention Center (DAIC) in Bedford Hills, NY.  He presents frequently at national conferences, schools, and parent organizations.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here.

Modern Love

by Chantal Sicile-Kira

Editorial Note: This article originally appeared in Spectrum Magazine in the February/March 2010 issue.

My son is pining for a girlfriend. He’s on Facebook.

Relationship Status: Single

Interested In: Women

Looking For: Friendship, Dating,  A Relationship, Networking.

Political Views: Go Obama!

About Me:  I like to listen to music and walk on the beach. I can type with one finger. I have autism.

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series.  Never mind that he is autistic, and needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress).

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds.  I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50’s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, which is basically a show about how four good friends from the East Coast now living in LA try to get laid and avoid relationships in between acting gigs.  There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, nicely offered us the DVD of the first season as a gift.  Jeremy got hooked. When asked what he liked about it, Jeremy spelled out, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concern for Jeremy up until now has been where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive. Not a week goes by when I don’t think about this and research the possibilities and create possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled, years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your precious child. Because at the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. Already just thinking of providing the basic necessities of food, shelter and work for your loved one with autism is a constant worry (unless he is a trust fund baby). But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be, not because they are related to you – are also basic necessities, the kind you can’t pay for even if you have the money.  I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers; asking me what they should do, how are they going to cope.  I feel their pain, my heart aches as it mirrors my own distress.  We have barely enough energy to make it through an autism –filled day, let alone plan for the tangible – and less tangible – future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about 4 years.  The way he describes what autism is like for him, it sounds like a less severe form of  “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor in chief of Elle suffered.  Bauby, had a stroke and lasped into a coma and when he woke up he could move only his left eye.  He wrote his memoir The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks.  “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate.  People ask do I feel emotions. Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me.  I am the same as you inside.  I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV:  Jeremy masters assistive technology in order to have a voice, yet  has difficulty  staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “ I want a cell phone.”  “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But, I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from your home and practice communicating,” I told him.  Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing.  What are you doing right now?  Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out  different gyms.  Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to? ” I asked.  Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said “You’ve just missed the Charger Girls! They just left.” Jeremy was even happier – a Charger Girls poster is the only athletic memorabilia hanging in his room.   “I like this place! This is where I want to come workout.” commented Jeremy.  Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes regularly there with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out “I want to buy a calendar with pictures of girls for Troy,”  he spelled. “Uhhh…. OK, ask Janine to take you to the mall,” I replied. Jeremy is, after all, over 18.  Sure enough, Jeremy came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.”  “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained.  I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity of how it is not that easy and that, yes, being autistic and all that entails for him, it will be difficult. But that even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”

I ask him, “What does love mean for you?”  “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”  I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on Big Love. Having three wives, a 3-house suburban home, an extended family and strong community ties  – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite.  This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.

 

 

Back to School 101: Tips for General Education Teachers About Students with Asperger’s Syndrome

This was first published as a  blog post on my  Psychology Today blog on September 9, 2010, but the information is still still relevant today.

Often junior high and high school teachers have teenagers with Asperger’s Syndrome (AS) included in their classrooms, and are not given much in the way of useful information. Here I hope to provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.

Parents, you may wish to print this out to give to your child’s teacher, or send them the link. There are only a few tips here, but usually teachers are receptive so practical information that may help them to understand and reach their student.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

* It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel, meaning they have only one other processing channels (auditory or visual) working effectively at one time. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to be focused on the day’s lesson.

* The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”

* This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.

* Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.

* Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Making (and Keeping) Friends: A Model for Social Skills Instruction

Contributed by: Dr. Scott Bellini, Associate Director from Indiana Institute on Disability and Community

“I am not asking for my child to be the life of the party, or a social butterfly. I just want her to be happy and have some friends of her own. She is a wonderful kid, and I hope someday others can see that.”

Social Skill Deficits in Autism Spectrum Disorders

Indeed, many parents of children with autism spectrum disorders (ASD) echo this sentiment concerning their child’s social functioning. They know that their child has many wonderful qualities to offer others, but the nature of their disability, or more precisely, their poor social skills, often preclude them from establishing meaningful social relationships. This frustration is amplified when parents know that their children want desperately to have friends, but fail miserably when trying to make friends. Often, their failure is a direct result of ineffectual programs and inadequate resources typically made available for social skills instruction. For most children, basic social skills (e.g., turn taking, initiating conversation) are acquired quickly and easily. For children with ASD, the process is much more difficult. Whereas, many children learn these basic skills simply by exposure to social situations, children with ASD often need to be taught skills explicitly, and as early as possible. The present article addresses social skill deficits in young children with ASD by providing a systematic five-step model for social skills instruction, with particular emphasis placed on an emerging intervention strategy, video self-modeling (VSM).

Lack of “Know-How” Versus Lack of Social Interest

Impairment in social functioning is a central feature of ASD. Typical social skill deficits include: initiating interactions, responding to the initiations of others, maintaining eye contact, sharing enjoyment, reading the non-verbal cues of others, and taking another person’s perspective. The cause of these skill deficits varies, ranging from inherent neurological impairment to lack of opportunity to acquire skills (e.g., social withdrawal). Most important, these social skill deficits make it difficult for the individual to develop, and keep meaningful and fulfilling personal relationships. Although social skill deficits are a central feature of ASD, few young children receive adequate social skills programming (Hume, Bellini, & Pratt, 2005). This is a troubling reality, especially considering that the presence of social impairment may lead to the development of more detrimental outcomes, such as poor academic achievement, social failure and peer rejection, anxiety, depression, and other negative outcomes (Bellini, 2006; Tantam, 2000; Welsh, Park, Widaman, & O’Neil, 2001). And the lack of social skills programming is particularly troubling given that fact that many social skill difficulties can be ameliorated via effective social skills instruction.

The long held notion that children with autism spectrum disorders lack an interest in social interactions is often inaccurate. Many children with ASD do indeed desire social involvement, however, these children typically lack the necessary skills to interact effectively. One young man I worked with illustrates this point quite well. Prior to my visit, the school staff informed me of his inappropriate behaviors and his apparent “lack of interest” in interacting with other children. After spending the morning in a self-contained classroom, Zach was given the opportunity to eat lunch with the general school population (a time and place that produced many of the problem behaviors). As he was eating lunch, a group of children to his right began a discussion about frogs. As soon as the conversation began, he immediately took notice. So too did I. As he was listening to the other children, he began to remove his shoes, followed by his socks. I remember thinking, “Oh boy, here we go!” As soon as the second sock fell to the ground, Zach flopped his feet on the table, looked up at the group of children and proclaimed, “Look, webbed feet!” The other children (including myself) stared in amazement. In this case, Zach was demonstrating a desire to enter and be a part of a social situation, but he was obviously lacking the necessary skills to do so in an appropriate and effective manner.

This lack of “know-how” could also lead to feelings of social anxiety in some children. Many parents and teachers report that social situations typically evoke a great deal of anxiety from their children. Children with ASD often describe an anxiety that resembles what many of us feel when we are forced to speak in public (increased heart rate, sweaty palms, noticeable shaking, difficulties concentrating, etc.). Not only is the speaking stressful, but just the thought of it is enough to produce stomach-gnawing butterflies. Imagine living a life where every social interaction you experience was as anxiety provoking as having to make a speech in front of a large group! The typical coping mechanism for most of us is to reduce the stress and anxiety by avoiding the stressful situation. For children with ASD, it often results in the avoidance of social situations, and subsequently, the development of social skill deficits. When a child continually avoids social encounters, she denies herself the opportunity to acquire social interaction skills. In some children, these social skill deficits lead to negative peer interactions, peer rejection, isolation, anxiety, depression, substance abuse, and even suicidal ideation. For others, it creates a pattern of absorption in solitary activities and hobbies; a pattern that is often difficult to change.

A Five Step Model

  1. Assess Social Functioning
  2. Distinguish Between Skill Acquisition and Performance Deficits
  3. Select Intervention Strategies
  4. Implement Intervention
  5. Evaluate and Monitor Progress

The following section will summarize my five-step model of social skills instruction (Bellini, 2006). Before implementing social skills instruction, it is important to begin with a thorough assessment of the individual’s current level of social skills functioning. Once the assessment is complete, the next step is to discern between skill acquisition deficits and performance deficits. Based on this information, the selection of intervention strategies takes place. Once intervention strategies are implemented, it is then imperative to evaluate and modify the intervention as needed. Although I use the term “Steps,” it is important to note that the model is not perfectly linear. That is, in real-life applications social skills instruction will not follow a lock-step approach from step one to step five. For instance, it is not uncommon for me to identify additional social skill deficits (step one) while I am in the middle of the implementation process (step four). In addition, I am continually assessing and modifying the intervention as additional information and data are accumulated.

Assess Social Functioning

The first step in any social skill training program should consist of conducting a thorough evaluation of the child’s current level of social functioning. The purpose of the assessment is to answer one very basic, yet complicated, question: What is precluding the child from establishing and maintaining social relationships? For most children, the answer takes the form of specific social skill deficits. For others, the answer takes the form of cruel and rejecting peers. And for yet other children, the answer is both.

The evaluation should detail both the strengths and weakness of the individual related to social functioning. The assessment should involve a combination of observation (both naturalistic and structured), interview (e.g., parents, teachers, playground supervisors, the child), and standardized measures (e.g., behavioral checklists, social skills measures). I have developed the Autism Social Skills Profile (ASSP) to assist in the identification of typical social skill deficits in children with ASD, and to measure the progress the child is making in the program. Kathleen Quill (2000) also provides an excellent social skills checklist for parents and professionals in her book, Do-Watch-Listen-Say. It is important for the child’s team to ascertain current level of functioning and effectively intervene at the child’s area of need. For instance, if the evaluation reveals that the child is unable to maintain simple one-on-one interactions with others, then the intervention should begin at this level and not at a more advanced group interaction level. Or, if the evaluation revels that the child does not know how to play symbolically or even functionally with play items, then the intervention will probably begin by teaching play skills prior to teaching specific interaction skills. After a thorough assessment of social functioning is complete, the team should then determine whether the skill deficits identified are the result of skill acquisition deficits or performance deficits.

[Author’s Note: A detailed description of social skills assessment is beyond the scope of this article. More information on this topic, including a copy of the ASSP, can be found in the author’s book, Building Social Relationships]

Distinguish Between Skill Acquisition and Performance Deficits

After a thorough assessment of the child’s social functioning and after identifying the skills that we will teach, it is imperative to determine whether the skill deficits are the result of skill acquisition deficits or performance deficits (Elliott & Gresham, 1991). Simply put, the success of your social skills program hinges on your ability to distinguish between skill acquisition deficits and performance deficits!

A skill acquisition deficit refers to the absence of a particular skill or behavior. For example, a young child with ASD may not know how to effectively join-in activities with peers; therefore, he/she will often fail to participate. If we want this child to join-in activities with peers, we need to teach her the necessary skills to do so.

A performance deficit refers to a skill or behavior that is present, but not demonstrated or performed. To use the same example, a child may have the skill (or ability) to join-in an activity, but for some reason, fails to do so. In this case, if we want the child to participate we would not need to teach the child to do so (since she already has the skill). Instead, we would need to address the factor that is impeding performance of the skill, such as lack of motivation, anxiety, or sensory sensitivities.

A good rule of thumb in discerning between a skill acquisition deficit and a performance deficit is to ask the question, “Can the child perform the task with multiple persons and across multiple settings?” For instance, if the child only initiates interactions with mom at home and not with his peers at school, then you should address the initiation difficulty as a skill acquisition deficit. I hear the statement a lot from school personnel, “The child interacts fine with me, so it must be a performance deficit, right?” Not quite. In my experience, children with ASD tend to interact better and more easily with adults, because adults typically make it easy for them; the adults do most of the conversational “work” for the child. To use a baseball analogy, just because Tommy can hit Dad’s soft, underhand pitches at home, doesn’t mean he has mastered the skill well enough to hit pitches thrown by his peers on the playing field. Sometimes adult interactions with children with ASD are similar to throwing a child a soft, underhand pitch. Although they are positive and well intended, they do not adequately prepare the child for more difficult peer-to-peer interactions.

Too often, social skill deficits and inappropriate behaviors are incorrectly conceptualized as performance deficits. That is, we tend to assume that when a child does not perform a behavior, it is the result of refusal or lack of motivation. In other words, we assume that the child who does not initiate interactions with peers has the ability to initiate, but does not want to initiate (performance deficit). In many cases, this is a faulty assumption. In my experience, the vast majority of social skill deficits in young children with ASD can be attributed to skill acquisition deficits. That is, children with ASD are not performing socially because they lack the necessary skills to perform socially—not because they do not want to be social or refuse to be social. If we want young children to be successful socially, then we have to TEACH them the skills to be successful! Therefore, it is essential to focus on skill development when implementing social skills instruction.

The benefit of using a skill acquisition/performance deficit model is that it guides the selection of intervention strategies. Most intervention strategies are better suited for either skill acquisition or performance deficits. The intervention selected should match the type of deficit present. That is, you would not want to deliver an intervention designed for a performance deficit, if the child was mainly experiencing a skill acquisition deficit. For instance, in the example above, if Tommy has not mastered the skill of hitting (skill acquisition deficit), all the reinforcement in the world (including pizza!) will not help Tommy hit the ball during the game. If we want him to be a skilled hitter, we need to provide Tommy additional instruction on the mechanics of hitting a baseball. The same is true for social skills. If we want a child to be socially fluent, then we need to deliver effective social skills instruction. In contrast, if Tommy does have sufficient hitting skills, but lacks the motivation to “do his best,” then the reward of cheese and pepperoni may be all he needs to excel on the playing field.

Once a thorough social skill assessment is completed and the team is able to attribute the social difficulties to either skill acquisition or performance deficits, social skills instruction is ready to begin. There are a variety of strategies that can be delivered to young children with ASD. The most important thing is that the strategies being delivered are appropriate to the unique needs of the child and that a logical rationale can be provided for using the intervention. The following strategies provide a sampling of techniques that can be implemented to teach successful social interaction skills to children and adolescents with ASD. Other than peer mediated interventions (PMI), the strategies listed below are designed to address skill acquisition deficits. However, some of the strategies (in particular, video self-modeling and social stories) work equally well in addressing performance deficits. In addition, it is imperative that the child be reinforced continually for his effort and participation in the program.

Selecting Intervention Strategies: Accommodation and Assimilation

When selecting intervention strategies, it is important to consider the notion of accommodation versus assimilation. Accommodation, as it relates to social skills instruction, refers to the act of modifying the physical or social environment of the child to promote positive social interactions. Examples of this include: training peer mentors to interact with the child throughout the school day, autism awareness training for classmates, and signing your child up for various group activities, such as little league, or Boy or Girl Scouts. Whereas accommodation addresses changes in the environment, assimilation focuses on changes in the child. Assimilation refers to instruction that facilitates skill development that allows the child to be more successful in social interactions. The key to a successful social skills training program is to address both accommodation and assimilation. Focusing on one and not the other sets the child up for failure. For instance, one family that I worked with did a wonderful job of structuring playgroups for their child, and keeping their child active in social activities. However, they were becoming increasingly frustrated with the fact that their son was not making friends and still having negative peer interactions. The problem was that they were putting the cart before the horse. They provided their child with ample opportunity to interact with others, but they weren’t providing him the skills necessary to be successful in those interactions. Similarly, providing skill instruction (assimilation) without modifying the environment to be more accepting of the child with autism also sets the child up for failure. This happens the moment an eager child with autism tries out a newly learned skill on a group of non-accepting peers. The key is to teach skills and modify the environment. This ensures that the new skill is received by peers with both understanding and acceptance.

Social Skills Strategies

As stated previously, social skills often need to be taught explicitly to children and adolescents with ASD. Traditional social skills strategies (such as board games about friendships and appropriate classroom behavior) tend to be too subtle for many children with ASD. For instance, a school counselor was frustrated with the progress she was making with a student with autism. She stated that the program was showing positive results with “other kids in the group,” but the student with autism didn’t seem to “get it.” Indeed, he was not “getting it!” The reason was quite apparent. The school counselor was attempting to teach the students about the concept of “friendship.” This is acceptable for some children, but for children with ASD it tends to be a too subtle form of instruction. That is, instead of spending countless hours teaching the child about “friendship,” the instruction should have focused on skills the child could use to make and keep friends. Experience tells me that the concept of friendship is much easier to understand once you have a friend or two!

There are number of important questions to consider when selecting social skill strategies. For instance, does the strategy target the skill deficits identified in the social assessment? Does the strategy enhance performance? Does the strategy promote skill acquisition? Is there research to support its use? If not, what is your plan to evaluate its effectiveness with your child? Is it developmentally appropriate for your child? The following is a list of social skill strategies that have demonstrated effectiveness in teaching social interaction skills to children with ASD.

The following section summarizes various social intervention strategies that have been designed to promote social interaction skills in young children with ASD, including peer-mediated instruction, thinking-feeling activities, social stories, role-playing, and video- modeling.

Peer Mediated Interventions

The use of peer mentors is one example of an effective strategy for young children with ASD. Peer mediated interventions (PMI) have been frequently used to promote positive social interactions among preschool aged peers (Strain & Odom, 1986; Odom, McConnell, & McEvoy 1992). Peer mediated instruction allows us to structure the physical and social environment in a manner to promote successful social interactions. In this approach, peers are systematically trained to make social initiations or respond promptly and appropriately to the initiations of children with ASD during the course of their school day. Peer mentors should be classmates of the child with ASD, have age-appropriate social and play skills, have a record of regular attendance, and have a positive (or at least neutral) history of interactions with the child with ASD. Peer mentors should also be made aware of the behaviors associated with autism in a manner that is respectful and developmentally appropriate for the age group. The use of peer mentors allows the teacher and other adults to act as facilitators, rather than participate as active playmates. That is, instead of being a third wheel in child-child interaction, the teacher prompts the peer buddies to initiate and respond appropriately to the child with ASD and then get out of the way!. The use of peer mentors also facilitates generalization of skills by ensuring that newly acquired skills are performed and practiced with peers in the natural environment.

For more information on peer-mediated interventions, see Vanderbilt/Minnesota social interaction project play time/social time: Organizing your classroom to build interaction skills. (Odom & MCConnell, 1993).

Thoughts and Feelings Activities

Recognizing and understanding the feelings and thoughts of self and others is often an area of weakness for children with ASD and is essential to successful social interactions. For instance, we continually modify our behavior based on the non-verbal feedback we receive from other people. We may elaborate on a story if the other person is smiling, looking on intently, or showing other signs of genuine interest. On the other hand, if the other person repeatedly looks at her watch, sighs, or looks otherwise disinterested, we may perhaps cut the story short (I said perhaps!). Children with ASD often have difficulty recognizing and understanding these non-verbal cues. Because of this, they are less able to modify their behavior to meet the emotional and cognitive needs of other people.

The most basic thought and feeling activity involves showing the child pictures of people exhibiting various emotions. Pictures can range from showing basic emotions such as happy, sad, angry, or scared, to more complicated emotions such as embarrassed, ashamed, nervous, or incredulous. Begin by asking the child to point to an emotion (i.e., “point to happy”), then ask the child to identify what the character is feeling (i.e., “how is he feeling.

Many of the young children I work with seem to pick up the ability to identify emotions quite easily. When they do, it is time to move on to more advanced instructional strategies, such as teaching them to understand the meaning or “why” behind emotions. This requires the child to make inferences based on the context and cues provided in the picture. That is, based on the information in the picture, ask “why is the child sad?” The pictures should portray characters participating in various social situations and exhibiting various facial expressions or other nonverbal expressions of emotion. You may cut pictures out of magazines, or download and print them from the Internet. You may also use illustrations from children’s books, which are typically rich in emotional content and contextual cues.

Once mastery is achieved on the pictures, move to television programs or video footage of social situations. Many of the programs that air on Sprout or Noggin, are excellent resources for this procedure because they portray characters in social situations, and display clear emotional expressions. You can use the same procedure as for the pictures, only this time the child is making inferences based on dynamic social cues. Simply ask the child to identify what the characters in the video are feeling and why they are feeling that way. When the scenario moves too quickly for the child, press pause, and ask the question with a still frame. (Make sure your machine has a clear picture when on pause.)

Patricia Howlin’s book Teaching Children with Autism to Mind-Read offers helpful information and resources in this area of instruction. In addition, there are a number of software programs on the market that address both emotions and perspective taking abilities (seeMind-Reading: An Interactive Guide to Emotions by Simon Baron-Cohen).

Social Stories

A Social Story is a frequently used strategy to teach social skills to children with disabilities. A Social Story is a non-coercive approach that presents social concepts and rules to children in the form of a brief story. This strategy could be used to teach a number of social and behavioral concepts, such as making transitions, playing a game, and going on a field trip. Carol Gray (1995; 2000) outlines a number of components that are essential to a successful Social Story, including: the story should be written in response to the child’s personal need; the story should be something the child wants to read on her own (depending upon ability level); the story should be commensurate with ability and comprehension level; and the story should use less directive terms such “can,” or “could,” instead of “will” or “must.” This last component is especially important for children who tend to be oppositional or defiant (i.e., the child who doesn’t decide what to do until you tell him to do something…then he does the opposite!). The Social Story can be paired with pictures and placed on a computer to take advantage of the child’s propensity towards visual instruction and interest in computers. I have found that children with ASD learn best when Social Stories are used in conjunction with Role-Playing and used as a social primer. That is, after reading a Social Story, the child then practices the skill introduced in the story. For instance, immediately after reading a story about joining-in an activity with peers, the child would practice the skill. Then, after reading the story and practicing the skill, the child would be exposed to a social situation where she would have an opportunity to perform the skill. For more comprehensive guidance on creating a Social Story, see Gray, 1995.

Role Playing/Behavioral Rehearsal

Role-playing or behavioral rehearsal is used primarily to teach basic social interaction skills. It is an effective approach to teaching social skills that allows for the positive practice of skills (Gresham, 2002). Role-playing involves acting out situations or activities in a structured environment to practice newly acquired skills and strategies, or previously learned skills that the child is having difficulties performing. Role-plays can be either scripted or spontaneous. In the latter, the child is provided with a scenario (e.g., asking another child to play with him), but not with the specific script. Typically, I combine scripted and unscripted elements to each role-play. For instance, the child might be provided with an opening statement or question, but the rest of the interaction would be spontaneous.

I use role-playing to teach a variety of interaction skills, particularly those involving initiating, responding, and terminating interactions. In one scenario, the child is required to initiate a conversation with another person, who is engaged in a separate task. Consequently, he would have to ask to join in, or ask the other person to join him in an activity. The latter typically proves to be most difficult for children with ASD.

During the first few sessions, it is not uncommon for the child to get “stuck” in conversations and interactions, often for minutes without knowing what to say or how to proceed. During the early sessions, the child should be given ample time to process and respond to the role-play scenarios. As the sessions progress, speed and proficiency should gradually increase.

Video Modeling and Video Self-Modeling (VSM)

Video modeling is without a doubt the most effective social skills intervention strategy that I have used with young children with ASD. A video modeling intervention involves an individual watching a video demonstration of a behavior and then imitating the behavior of the model. Video modeling may be used with peers, adults, or self as a model (video self-modeling). Video self-modeling (VSM) interventions have the added advantage of providing the child with a visual representation of success…their own success! VSM can be used to promote skill acquisition, enhance skill performance, and reduce problem behaviors. It integrates a powerful learning medium for children with ASD (visually cued instruction) with an effective evidence-based intervention modality (modeling).

An emerging body of research demonstrates great promise for the use of video modeling (peer or adult as model), and video self-modeling (VSM), as a therapeutic modality for children with ASD. Bellini and Akullian (in-press) conducted a meta-analysis of video modeling and video-self modeling research across 20 peer-reviewed studies and involving 63 participants with ASD. Results suggest that video modeling and VSM are effective intervention strategies for addressing social-communication skills, behavioral functioning, and functional skills in children and adolescents with ASD. Specifically, these procedures promote skill acquisition and that skills acquired via video modeling and VSM are maintained over time and transferred across person and settings. That is, video modeling and VSM appear to be effective interventions for children across the spectrum of autism from early childhood to adolescence. Interventions produced rapid increases (or decreases in some cases) in targeted skills with a median intervention length of nine video viewings. In addition, the median duration of the video clips shown to participants was only three minutes.

VSM interventions typically fall within two categories, positive self-review (PSR) and video feedforward (Dowrick, 1999).

PSR refers to children viewing themselves successfully engaging in a behavior or activity that is currently in their behavioral repertoire. PSR may be used with low-frequency behaviors or behaviors that were once mastered, but are no longer. In this case, the individual is videotaped while engaging in the low-frequency behavior and then shown a video of the behavior. An example of a PSR intervention for preschoolers would be to video record the child participating with peers (low frequency behavior) and then show the child the video. Buggey and colleagues (1999) used a PSR intervention to increase responding behaviors in young children with ASD. The children in the study viewed videotapes of themselves answering questions while engaging in play activities. Although answering questions was a low frequency behavior for these children, the videos were edited to portray the children as fluent in their responses (i.e., non-responses were edited out of the video). The intervention produced rapid increases in unprompted verbal responding.

Video feedforward, another category of VSM interventions, is typically used when the individual already possesses the necessary skills in her behavioral repertoire, but is unable to put them together to complete an activity. For instance, the child may have the ability to get out of bed, brush her teeth, get dressed, and comb her hair (morning routine), but cannot perform these skills in the proper sequence. A video feedforward intervention would videotape her engaging in each of these tasks and then splice the segments together to form the proper sequence. The same may be done with typical social interaction sequences. For instance, the child could be videotaped demonstrating three different skills: initiating an interaction, maintaining a reciprocal interaction, and appropriately terminating the interaction. The three scenes could then be blended together to portray one successful, and fluent social interaction.

Feedforward is also a good option for children who need additional assistance, or support, to complete tasks successfully. The notion of “hidden supports” is an important component of video feedforward interventions. For instance, the child may be videotaped interacting with peers while an adult provides assistance through cueing and prompting. The adult prompt is edited out (i.e., hidden) so that when the child views the video segment, she sees herself as independent and successful. Feedforward requires additional technological capabilities, as compared to PSR, but it typically requires a smaller quantity of raw video footage.

For additional instruction on conducting VSM intervention, please refer to the Video Futures Project at the University of Alaska, Anchorage, http://www.alaskachd.org/products/video_futures/index.html .

For additional information on editing home movies, check out the helpful website, How Stuff Works, at:http://computer.howstuffworks.com/video-editing.htm

Implement the Intervention

Once you have assessed social skill functioning and identified skills to teach, discerned between skill acquisition and performance deficits, and selected intervention strategies, it is time to implement the strategies. Social skills instruction should be provided in multiple settings (home, classroom, resource room, playground, community, etc.) and by multiple providers. There is no “best” place to teach social skills, though it is important to keep in mind that the purpose of all social skills instruction should be to promote social success with PEERS, in the NATURAL environment. As such, if the child is receiving social skills training in a school resource room (or by a private therapist), it is imperative that a plan be put in place to facilitate transfer of skills from the resource room to the natural environment. Parents and teachers should look for opportunities to prompt and reinforce the skills that are being taught in the resource room or clinic.

Rate of skill development differs greatly from one child to the next. Some children will begin utilizing their new skills after only two or three sessions, while other children may require over three months to before they begin to “get it” and start using their newly learned skills. Of course simply using or trying a skill is just the first step towards social success. The child will take additional time to master the social skills that he is learning and developing. Gresham et al. (2001) recommended that social skills training be implemented more frequently and more intensely than what is typically implemented. They concluded that “thirty hours of instruction, spread over 10-12 weeks is NOT enough” (p. 341). Social skill instruction should be intense (as frequently as possible) and encompassing (in every environment the child enters).

Assess and Modify the Intervention

Although “Assess and Modify” is listed as the last stage in the intervention process, it certainly is not the least important. In addition, it also is not the last thing to think about when designing a social skills program. Typically, as soon as I am able to identify the social skill deficits to be addressed, I begin to develop the methods for evaluating the efficacy of the intervention. To use a basic example, if the target of the intervention is social initiations, then I might take baseline data on the frequency of initiations with peers and adults. I would then continue to collect data on social initiations throughout the implementation stage. Accurate data collection is essential in evaluating the effectiveness of the intervention. It allows us to determine whether the child is benefiting from the instruction, and how to modify the program to best meet the child’s needs. In school settings, accurate data collection is a legal imperative. When I work with school teams, the focus is on integrating the social skills program with the child’s behavioral and social objectives. As such, Stage 5 is typically a very important aspect of IEP development, implementation, and integrity.

Case Example

The following case study illustrates the use of a social skills intervention for a young girl diagnosed with autism. “Kelly,” was a kindergartener with low average verbal ability. Although her vocabulary was in the average range for children her age, she seldom used her language spontaneously with classmates and teachers. She spoke only when asked direct questions and interacted only when others initiated the interactions. Consequently, Kelly spent the majority of her playground time by herself, with little peer interaction. A social skills assessment concluded that she had significant skill deficits in initiating interactions, and maintaining interactions with peers. A social skills intervention was designed to increase the frequency and length of social interactions with peers. Data on peer interactions (initiations and responses to peers) were collected in both a structured playgroup, and during recess. Two peer mentors were selected to participate in a structured playgroup with Kelly. The peers were instructed to initiate and to respond promptly to Kelly’s initiations. The peers were also provided developmentally appropriate information regarding autism and Kelly’s behaviors, which included hand-flapping. Also prior to the playgroup, Kelly was read a social story related to initiating social interactions. Each time the story was read, Kelly was given the opportunity to practice initiation skills via a role-playing procedure. The children participated in a playgroup three days a week for two weeks. During the playgroups, Kelly was prompted to initiate interactions with the peers, and she was prompted to respond promptly and appropriately to the peers when they initiated interactions with her. The playgroups were videotaped over the two-week time period. The video footage was then edited to exclude the continual prompting and coaching provided to Kelly. The edited tapes portrayed Kelly fluently and effectively interacting with her peers. The tapes were shown to Kelly in 5-minute increments for two weeks. For Kelly, the VSM procedure facilitated immediate increases in initiations and responses to peers in both the play setting and on the playground. By the end of the school year, Kelly had developed relationships with two other children, friendships that continue to this day.

The purpose of this article is not to provide an all-inclusive list of social skills strategies available for children with ASD. Instead, the present article presents a social skills training model that assists families and professionals in the delivery of social skills instruction. In addition, not all programs are appropriate for every child. Great care and planning needs to be put forth to ensure that the strategies used in the program meet the individual needs of the child. Therefore, a multi-dimensional intervention strategy that addresses the individual characteristics (both strengths and weaknesses) of the child is imperative. In the example above, Kelly received weekly social skills instruction, in addition to speech and occupational therapy. Kelly needed a full compliment of strategies to be successful socially. As her mother told me, Kelly may never be the life of the party or a “social butterfly.” However, with the delivery of an effective social skills program, Kelly has been given an opportunity to develop the skills necessary to develop meaningful personal relationships. And the rest of us have been given the opportunity to meet a truly wonderful child.

References

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Bellini, S. (2006). The development of social anxiety in high functioning adolescents with autism spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 2 (3), 138-145.

Buggey, T., Toombs, K, Gardener, P., & Cervetti, M. (1999). Journal of Positive Behavioral Support, 1, 205-214.

Dowrick, P. W. (1999). A review of self modeling and related interventions. Applied & Preventive Psychology, 8, 23-39.

Elliot, S., & Gresham, F. (1991). Social skills intervention guide. Circle Pines, MN: American Guidance.

Gray, C. A. (1995). Teaching children with autism to read social situations. In A. Quill (Ed.), Teaching Children with Autism: Strategies to Enhance Communication and Socialization (pp. 219-242). New York, NY: Delmar.

Gray. C. (2000).The new social story book: Illustrated edition. Arlington, TX: Future Horizons.

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Howlin, P., Baron-Cohen, S., & Hadwin, J. (1999). Teaching children with autism to mind-read: A practical guide. New York, NY: Wiley Publishing.

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Odom, S. & McConnell, S. (Eds.) (1993). Vanderbilt/Minnesota social interaction project play time/social time: Organizing your classroom to build interaction skills. Tucson, AZ: Communication Skill Builders.

Odom, S. L., McConnell, S. R., & McEvoy, M. A. (1992). Social competence of young children with disabilities: Issues and strategies for intervention. Baltimore: Paul H. Brookes.

Quill, K. (2000). DO-WATCH-LISTEN-SAY: Social and communication intervention for children with autism. Baltimore, MD. Brookes Publishing.

Strain, P. S., & Odom, S. L. (1986). Peer social initiations: An effective intervention for social skill deficits of preschool handicapped children. Exceptional Children, 52, 543 552.

Tantam, D. (2000). Psychological disorder in adolescents and adults with Asperger Syndrome. Autism, 4, 47-62.

Welsh, M., Park, R. D., Widaman, K., & O’Neil, R. (2001). Linkages between children’s social and academic competence: A longitudinal analysis Journal of School Psychology, 39(6), 463–481.

Article re-printed with permission from the Indiana Resource Center for Autism, at the Indiana Institute on Disability and Community, Indiana University Bloomington.


Bellini, S. (2009). Making (and keeping) friends: A model for social skills interaction. The Reporter, 8(3), 1-10.

 

Summer Updates

Recently I have been neglecting Autism College because I’ve been busy writing book #5:  A Full Life With Autism: From Learning to Forming Relationships to Achieving Independence. This book, co-authored with my son, Jeremy, is all about creating a life for a young person with autism. It’s a practical guide – like all my other books- but is really driven by my son’s goals and dreams for his future. At 22, he has many of the same aspirations as any young man, and as his mom (read: biggest advocate) I feel it is my duty to help him create the life he wants to live.

Now that the manuscript is done, I can get back to Autism College; back  to creating a site with practical information and training you can use. First step: getting more articles in the free library (those will be in over the next few weeks) and creating some courses on autism and the teens years, plus the transition to adulthood. Doing the research to write A Full Life has given me lots of new information and tips, and I look forward to sharing them with you.

Meanwhile, Autism College will present a free live Q & A on Monday, August 22, 2011 from 6:00 to 8:00pm PST with Dr. Peter Faustino, school psychologist, which I will be moderating.  The topic will be “Tips for Reducing the Back to School Stress for Children with Autism, Parents and Educators.”

More information to follow soon!