Recently, I unfolded a special quilt consisting of squares depicting individuals with Level 2 and Level 3 autism. Carefully laying it across the couch, I read each name and imagined the individuals’ faces, voices, and behaviors.
Seeing and touching all 52 of those 8-by-8 squares, I began reflecting on how each child with autism affected my life’s journey and provided some helpful ideas about how to help and support someone living each day on the spectrum with severe challenges.
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Memories of each student
I visualized the uniqueness of each child’s behavior. Sarah arrived directly from the state hospital, walking backward and making sure to lick each object on her way.
Mary, her head down, arms swirling, flicked the air with her fingers while making a whistling sound. I envision Mark throwing a TV partway across the family room and Kyle gagging on watermelon.
I pictured Tina holding the tiniest piece of lint between her thumb and pointer finger and Lisa climbing on the top of the playground bars, her hands flapping vigorously above her head.
I see Michael reading the newspaper, the letters on everyone’s T-shirts, and the manufacturer emblems on every car that passed.
I envisioned Scott talking in a whisper and Tracy sneaking out to Wendy’s, shoes in hand. I remember Christopher disrobing and running around the swimming pool, and Lisa dancing with happy feet.
Finally, I picture Max asking permission to avoid my eyes while trying to understand what I was saying.
Different ways of communicating
Each of those children tried to communicate their feelings, needs, and dislikes in different ways:
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Each child on the quilt was admitted into my school because I saw hope for them. I believed each could learn and that anything was possible if the families became part of the multi-disciplinary team.
Here is Max’s story.
Max was a tall, blond, and lanky teenager with an awkward gait and horn-rimmed glasses that he pushed onto his nose many times each day.
He was the highest cognitive student in the twenty years since I founded and directed the Kaplan Foundation. He read, wrote, understood mathematics, and engaged in conversation with me.
I do not remember what brought Max into my office that fall day. However, I will never forget the wonderful insight he gave me with his simple request, which helped me appreciate the sensory challenges he and other children faced.
Max asked if he could glance at me for just a moment and then complete his request without continuing to make eye contact. “It’s hard for me to look at your eyes, hear what you are saying, and answer you at the same time.”
We agreed he would look at my face upon entering my office or at the beginning of a conversation, but he could look down or away the rest of the time.
In the early years of behavior intervention, expecting a child to make sustained eye contact was a standard procedure. Children like Max were provided with every kind of social reinforcement possible to increase the likelihood of prolonged eye contact.
It was standard to see that behavior goal written on every child’s IEP if they had autism.
Today, students watch movies and act out plays and skits to understand how to position their bodies to indicate an openness to conversation or to understand when someone is bored with a topic, in a hurry, tired, angry, or frustrated.
Creating activities for community engagement and social interaction
I knew how important it was to create activities for Max and other students to engage with and within their communities. That way, they might one day be able to engage in social interactions in their schools, homes, and local communities.
Max participated in meals prepared and served family-style. On special occasions, linens, flowers, or holiday decorations were placed on or in the center of the table.
Max and others prepared meals with the staff through verbal cueing, visual pictures, gestures, or hand-over-hand support. They stirred, whipped, or blended items before cooking and set and cleared the tables with a meal buddy.
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Learning life skills
Every student learned to wash and cut vegetables for salads, as well as locate and add ingredients to dishes.
Part of learning to participate with others in a home environment included using a toaster and a manual or electric can opener, and operating a microwave.
These small appliances also supported the fine motor, motor planning, and sequencing skills students would need to function as adults.
Staff joined the housemates, modeling appropriate table manners, eating habits, and conversational speech.
They facilitated requests, such as “Please pass the salt,” and modeled questions and comments, like “What did you do at school today?”
Daily recreational activities included visits to libraries, amusement parks, regional parks, and bowling alleys. Students also went on outings to Christmas tree farms, pumpkin patches, and the mall.
They learned how to window shop, drink hot chocolate at local cafes, watch movies, attend sports events or plays, and listen to concerts.
Staff supported students by demonstrating and modeling appropriate behaviors, physically prompting engagement, and facilitating communication strips.
Housemates learned to share space, take turns, wait for their needs to be met, and work in a group.
Lunch was a community event, and art and music classes were held in groups of four to six. Physical education activities, such as swimming and jogging, were conducted in small groups.
Students joined birthday celebrations and picnics with staff and parents. They also learned to participate in the Special Olympics.
Finding the courage to connect and learn
Novelty was always challenging for Max, and he, along with others, initially resisted and became overwhelmed. However, with the right kind of support, structuring, patience, and pre-teaching, they all succeeded in group activities.
Max found the courage to ask for what he needed to connect and learn. This helped me search for different solutions and ideas to help children with ASD acquire social thinking and social interaction skills.
He also helped me realize that I needed to always consider the feelings of each individual on the spectrum and understand how they might see and feel the world.
This article was featured in Issue 177 — Autism Advocacy and Acceptance
If you have a success story you would like to share with us and our readers, you can email it to us or submit your story here.
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