Passion for AutismBy Paige Keeter, Program Manager, KidsPeace Community Services

My journey in autism began twelve years ago when I received a new child on my Behavior Specialist caseload. This youngster was diagnosed with autism. The movie “Rain Man” was really my only frame of reference for autism, but I soon came to learn “one size fits all” was not the motto for Autism Spectrum Disorders (ASD). My new referral was a non-verbal teenage male who liked to eat toiletries and engage in self-injurious face hitting. I left that first appointment with a determination to learn all I could about autism and associated behaviors and mannerisms. I went right to my local library and took out all of the books I could find on autism and ASD, as Google had not yet been invented. During that first case, I am sure I learned more from the child’s mother then she gained from me, but we formed a true partnership as we tried to develop ways to increase his communication through sign language and PECS – picture exchange communication system, decrease his attraction to toiletries and reduce his self-injurious behaviors. I learned very quickly that one cannot just try to eliminate a behavior without replacing it with a more adaptive behavior! I also learned the incredible amount of patience and endless supply of energy that families with an autistic youngster possess to care for their child.
       
My professional journey continued as I made a commitment to move my Behavior Specialist caseload to an all autism caseload. During the next few years, I attended trainings on the picture exchange system (PECS), began to receive individual and group training from a Board Certified Behavior Analyst specializing in both autism and Applied Behavior Analysis and took a crash course in sign language at a local community college two nights a week. My best teachers, however, were the children on my caseload; looking back, I hope they learned as much from me as I learned from them. It is true when people say: “When you see a child with autism you really have only seen one child.”  Each of the children with whom I work is so very different and has a unique blend of strengths and deficits.
     
Currently, my career is at KidsPeace where I have been fortunate to have the support of leadership to establish several community-based autism services including a therapeutic after school program, in-home Behavioral Health and Rehabilitative Services (BHRS), intensive case managers with training in autism, an autism diagnostic clinic and a therapeutic summer program called  “Sarah’s Smile.” Sarah’s Smile is named in honor of a wonderful little girl and her family with whom I had the pleasure of working for several years during which Sarah lived with both a diagnosis on the autism spectrum and Batten’s Syndrome. She died as a result of the Batten’s Syndrome three months before the new summer camp opened, and the name has continued to be a natural reminder that communication for these children comes in many forms and that we can never overlook even the smallest of gestures. Sarah was unable to speak due to the Batten’s Syndrome, but her smile let you know in an instant that she was happy to see you or pleased with the activity in which you were engaging her. For Sarah, her smile became her primary form of communication.
     
All of the KidsPeace autism programs operate from a foundation of Applied Behavioral Analyis (ABA), which involves the design, implementation and evaluation of environmental modifications to produce socially significant improvements in a person’s behavior. In the field of autism, some of the core goal areas we address are communication, social skills, safety awareness and self-injurious behaviors. Each child’s treatment is individualized to meet his/her specific needs and address skill deficit areas while at the same time building on each child’s strengths.
KidsPeace Community Programs provides services for children with autism from ages two to twenty-one. We continue to learn from the youngsters we serve every day, and we celebrate every success with them and their families, whether it is learning to match two identical objects, saying “mommy” for the very first time or going to their first high school dance.
   
My passion for autism cannot be denied, as it has carved out my professional path in life. I think back to my very first case and realize the impact it still has on me today as I talk with new staff about the importance of remembering how hard these children are working for us every day during programming and the importance of truly partnering with the families we are serving. I feel these are two key factors to the success our programs have enjoyed. We also spend a lot of time working with our children and families in steps – basic skills mastered then lead to more complex skills. This is true for in-home communication skills, learning to play a game with peers at our site-based programs or generalizing learned skills to venture out into the world for a “real life” experience.
     
The following is a list of tips to prepare for a  “real life” experience such as going out to eat. Preparing for an outing can be a trying experience for anyone with children. It can be much more difficult for a child with an autism spectrum disorder diagnosis. Here are some tips for successful planning:

1 Begin to talk about restaurants with the child – the name of the restaurant, types of foods served, what people do there (customers and employees), sounds and smells in the restaurant, and behavioral expectations such as using an indoor voice and no running.

2 Utilize visual cues/pictures when talking about the restaurant and the food choices if your child is a visual learner.

3 Write a social story for the child about the outing beginning with leaving the house and ending with arriving back at home. Take the social story with you to review in the car and restaurant. Make sure to describe the sights, smells and sounds in a restaurant. The purpose of the social story is to write the story specifically for the child so he or she knows what to expect during the outing and also what is required of him or her while on the outing. It can become a familiar point of reference at any point during the outing such as “Remember in your story it said you had to wait before sitting down at our table and that is okay.”

4 Practice waiting skills at home, delay immediate gratification of food items. Serve a non-preferred meal item first at lunch or dinner with the preferred food item served a few minutes after.

5 Try to obtain the menus to the restaurant ahead of time so the child can familiarize him/herself with the various food items and also verify that there are food items available the child will eat. Many restaurants have their menus posted on their website for easy access.

6 Begin dining experiences with fast food restaurants, where the wait is shorter, prior to a formal sit-down restaurant. Go at non-peak hours until increasing comfort within the new environments is gained.

7 If the restaurant offers call-ahead seating, utilize it to minimize wait time.

8 Ask for a booth when being seated so that the child can sit on the inside of the booth to minimize escape from the table.

9 Pack plenty of re-enforcers – preferred activities (hand-held games, coloring items, books), small preferred snacks or tokens if your child is familiar with a token system where he/she will earn something at the end of the restaurant outing.

10 Take along extra help the first few times – aunts, uncles, grandparents, friends or the child’s workers can provide support and an extra pair of hands.

11 Have a backup plan – take two cars if the whole family is going out to dine in case it becomes too overwhelming for your ASD child.

12 Praise every step your child makes towards a successful restaurant outing – it is hard work for him or her!

Paige Keeter lives and works in Allentown, PA, where she is the Program Manager for KidsPeace Community Services. Paige is a Board Certified Behavior Analyst and provides consultation to the KidsPeace Hospital and Residential services as a behavior analyst. Paige received a Bachelor of Science in Psychology and a Master of Arts in Counseling Psychology from Kutztown University. Paige has certification in Alcohol and Drug Counseling (CADC) from Villanova University and certification in Applied Behavior Analysis for Special Education from Penn State University.