BY DR. JACKIE MARQUETTE
My son Trent and I were on an outing shopping for his clothes. The store was loud and chaotic. Trent has autism and shopping wasn’t his favorite thing to do. He began to flap his hands and snap his fingers with an extremely tight facial expression. We knew what would happen next. He yelled out and. immediately following, he truly and earnestly expressed, “I’m sorry, I’m sorry.” While I understood he didn’t want to lose control, I saw how badly he felt about it. I sensed people’s stares and heard their silence of uneasiness or disapproval. Maybe it was only my imagination but their thoughts felt like arrows darting at me. Have you ever experienced something similar to this when in a new setting with your son/daughter or with a teen/adult you assist in the community who has an ASD or disability? This article introduces Self Emotional Awareness© (SEA), a model for parents, educators, and professional to assist individuals with ASD or disabilities to find enjoyment and purpose in the community, movement through adversity and adaptation.
If you have a child with an ASD or disability, you may have tried outings and arrived home emotionally spent because of your child’s inability to cope. Additionally, your other children may have felt let down because they were embarrassed or because they had to leave too early without enjoying the activity or outing. I know too well these experiences from my past. If you are a teacher or community coach, you may be looking for ideas to ease the student or young adult to work settings or the community environment, thus to increase adaptation.
To adapt means to change and grow as an individual and as a family, i.e., to participate in outings together, and to be part of a neighborhood and the community. Adapting is similar to developing a new habit; after you practice it consistently with the right supports in place, a new habit or adaptation takes place.
For the family, there are many different ways to include an individual with autism to participate in community outings, but some include: shopping at the grocery store, eating a meal out in a restaurant, and/or traveling on vacations. Additionally, there may be many outings such as medical and dental appointments that are necessary, and may be difficult for the individual for many reasons. I discovered that using a behavioral support plan isn’t always the answer to making successful adaptations that life demands. I believe it is possible for all individuals to make greater adaptations, even those with significant disabilities. I see the SEA Model as a connecting link to one’s adaptation. The SEA model process has enabled my son to adapt as a community member as well as travel by airplane for the first time, and to many different cities including New York City. I believe that pursuing one’s life with family and goals for education and work options as a community member isn’t a privilege but a basic human right.
I want to introduce you to writing a SEA©Story. The intention in writing a SEA© Story is to promote the understanding, purpose, and self-emotional awareness of the individual’s participation and adaptation to an event, community setting or family outings. The key is to meet the individual where he or she is in development and prepare him or her through numerous strategies such as: writing a checklist in a notebook, writing a narrative, or using tech tools for writing and pictures for imagery (computer or iPhone). It is important the individual participates in the complete process to emotionally increase self-awareness about their role in participating and in experiencing the outing. All emotions are recognized, such as anxiety about the event. Equally important, positive emotions are emphasized and logical steps through the process are intended to provide prediction and expectations so the individual is willing and ready to give his best.
Let’s now look at who the support people are to the individual and their role to assist in adaptation. The individual needs to feel safe with the support person and to know they can rely upon the supporter to understand their needs and challenges to adapt to an outing. I list three categories:
1. Mentor: To advise individual prior to the activity or event and/or to be a good listener after the event, thus, to sort through positive and negative outcomes of choices made. The mentor may or may not be physically present in the setting, but acts as support to the individual.
2. Caregiver or Support-giver: To set up for safety and success for individual to be exposed to the new setting. To evaluate the individual’s needs for supports based upon the upcoming event. To include the individual’s interests and strengths as part of the outing. To assist the individual during the outing/event. To allow for practice and development to unfold into a positive emotional experience. This is usually a parent or assistant, but can be anyone who goes with the individual as a support, i.e., teacher, community coach, or companion.
3. Support-allower: To offer assistance when asked or volunteer to offer assistance compassionately for the purposes of easing a difficult situation and turning it around on behalf of the individual. These individuals may be familiar people known in community settings or unknown individuals within the community that come forward to assist.
I want to introduce you to John.
John has autism and will be going on a field trip with his 8th grade class. John has strong interests in dinosaurs and the ability to read at 3rd grade level, but has challenges with social and emotional communication. John relies on people supports, structure, and tools to communicate within settings of confusion and loud crowd noise. Coping emotionally to social settings is a significant challenge. John’s teacher and parents collaborated with assisting John in writing a SEA© story for preparations for the field trip.
JOHN’S SELF EMOTIONAL AWARENESS© (SEA) STORY
• Next Tuesday, on the 13th, I will go on a field trip to the museum with my class. (date: When the trip will occur).
• We will all get on the bus at 9 am in the morning. (Time: When class will leave school)
• I choose to take my headphones to listen to calming soft music and keep out the loud noise on the bus. (support tool to cope)
• Sarah, my friend and my peer assistant, will sit with me on the bus and walk with me through the dinosaur exhibit at the museum. (the person to rely upon for assistance, asking questions, filling a need, feel safe, etc. Sarah enables ability to cope and perhaps enjoy the trip.)
• Sarah will make a request to the museum guide that I have a seat in the auditorium for a brief introduction to the museum before all the other students enter and sit down. This will reduce my anxiety because I will already seated as they walk in. (Support-allower)
• I will have $20.00 in my wallet to buy a dinosaur book in the museum after the exhibit is over. (to promote emotions of joy and happiness)
• After the museum tour, our class will go to lunch at Wendy’s. I will choose to order meal #1 from the menu: hamburger, french fries, lemonade. (ensure positive expectations)
• Then we will get on the bus and go back to school at 1:30. (prepare for relief and contentment, knowing when the class will travel back to school)
• I will have the chance to quietly read my new dinosaur book. (emotions of joy)
• I may want to see the museum before the field trip. I will do these two things: 1) Tomorrow mom and dad will take me downtown to drive past the museum. We might get out of the car and take a picture of the museum. (enhances familiarity and predictability on the day of the trip). 2) I will watch a YouTube video about the museum. (enhances familiarity and predictability on the day of the trip)
• I will enjoy my trip to the museum with my class.
THE SUPPORT-GIVER’S ROLE IS TO:
• Inform John of a fun and entertaining field trip to the museum coming up with his class. Together they circle the date in the calendar the field trip will take place.
• engage John in making a notebook with images or use technology such as an iPhone with the images revealing what to predict about the field trip.
• emphasize how he is part of the school group and it is a privilege to go on the trip.
• Take a picture of his headphones to put in iphone or in a notebook. Headphones are a reminder and a support so John can choose to use for coping with any loud noise and confusion. The iphone and the notebook are also support tools to prepare for the field trip.
• Take a picture of Sarah and John and place in the notebook or on iPhone. Sarah has been John’s peer assistant at school and she represents safety because John knows she is the one he can rely upon at the museum and Wendy’s.
• Take a picture of the $20.00 and place next to a photo of a dinosaur. This will emphasize emotions of joy and happiness about an item he can purchase reflecting his strong interest in dinosaurs.
• Take a picture of the Wendy’s restaurant and the meal options he can have to enjoy lunch. This builds upon John’s emotions of positive expectations.
• John has challenges in waiting in line appropriately. Place a picture of people standing in line to order their food. When John shows success at this, note in followup story about the field trip to promote positive self-emotional awareness. If he needs to sit out, don’t reprimand him, acknowledge that he tried and will keep practicing this skill.
• Write the time 1:30 and place next to the picture of the school. This will reinforce emotions of contentment and relief about when the outing ends.
• Parents will arrange to take John on an outing to drive by the museum so it will be familiar when he goes with the class.
• If available, show John a You Tube Video about the museum, to ensure familiarity.
• After John experiences the trip, write a SEA Story highlighting John’s responses and the emotions, high and challenging. This will promote John’s self-emotional awareness development and build upon the next community outing.
To conclude, the SEA© model is an approach and process to prepare an individual with ASD or related disability for best adaptation to a new setting or event. Friends and outsiders often ask me why individuals with autism have such a difficulty fitting in or adapting. I respond to them from my personal experiences with my son and my work with individuals with autism. Many experience high anxiety and fear in the community. First, they receive sensory input from the environment, such as loud noise or bright lights which cause discomfort and anxiety. Secondly, many become frustrated sorting through the confusion such as, to understand a question someone is asking. Thirdly, the pressure to respond timely, accurately, and appropriately compounds the dilemma, causing increased stress leading to decreased capability to perform effectively. This is the point where they feel an urgency to escape or lose control by having a meltdown.
I found that pre-planning for exposure to a setting is critical to the individual’s success in order to emotionally self-manage. Creating predictability and familiarity all within an introduction or structure are essential to the individual feeling safe, and understanding his part in the setting: to enjoy, participate, and adapt with self-emotional awareness. The SEA© Story can be beneficial to individuals of all levels of ASD or disability for the purposes of increasing self-emotional awareness and adapting. It can be applied to individuals who want to enter college, be effective on the job, and/or become a more involved community member for their own well-being.•
ABOUT THE AUTHOR:
Jackie Marquette Ph.D. is dedicated to bringing innovative and unique solution based career tools and leadership to organizations and individuals with autism and all disabilities. Dr. Jackie provides consultation, writes, and conducts her own research. She has a son with autism in his 30s who is an accomplished award winning artist. Visit