Daily Excerpt: Choice and Structure for Children with Autism (McNeil) - Long Days at Home

 

Excerpt from Choice and Structure for Children with Autism (McNeil) - 

Chapter 1

Introduction

Choice & Structure for Children with Autism is about identifying and celebrating the role of structure in supporting autistic children. We want children with autism to do more than exist—not just live, but confidently engage in home life. We desire for them to do more than survive. We hold out hope that they grow to the best of their individual potentials. Research and experience have shown autism advocates that structure is a great tool to that end. Children with autism absolutely thrive within high levels of structure. In the following chapters, I hope to show how that structure does not need to be rigid, overbearing, or difficult.

 

Many Long Days at Home

Our regular routines of school and work during the week and predictable weekend activities help all of us maintain balance. We know the schedule, we plan for the expectations, and we live these routines comfortably. What happens when these routines are disrupted? How do we and our children manage when weekends extend beyond Saturday and Sunday, or vacation days break the certainty in our activities?

Many long days of free play at home during weekends, holidays, school vacations and health quarantines can become challenging for children and their parents. All the toys have been played with, all the movies watched, and the overindulgence of home-bound activities has driven children to lose interest in the things around them. Toys, games, movies, and crafts are everywhere but kids complain that they are bored, quickly get into squabbles with their siblings and argue more with their parents.

 

Children with autism are no exception. Unfortunately, though, autistic children may express greater levels of frustration and stronger distressing emotions than their siblings and peers. Many children with autism typically have purposefully directed lives. Autistic children engage best in environments that are highly structured with predictable schedules and a high level of adult guidance. They spend their weekdays in school as do other children. And, they attend after school and weekend therapy, daily living skills instruction, behavioral services and specially designed recreational activities. It takes a variety of people with different knowledge bases to work with autistic children throughout the day. Due to their autism, these children already struggle with unstructured time and unpredictable situations. They easily become overwhelmed with too many things around them and a lack of direction. Long strings of days off schedule sets the stage for just the unstructured and unpredictable circumstances that are so challenging for children with autism.

 

After many hours of unstructured time, families may notice their children with autism distance themselves through heightened levels of self-stimulation (stim) behaviors. Autistic children may become more obsessive about keeping hold of particular toys or may become increasingly less-responsive to parent and sibling attempts at interaction. Toys may be played with briefly then discarded for another, and another, and another until the child becomes agitated. The child may choose to stim on one single toy, or have all their toys laid out across the floor not playing with anything. When approached or having requests made of them, children with autism may become quickly agitated or demanding, and express protest behaviors.

 

Often, without structure and predictability, autistic children will cycle through periods of isolation, self-stimulation and agitated engagement. Chaotic unsuccessful attempts of self-entertainment may be followed by making demands of parents, and tantrums. If this cycle is repeated daily it will become the new predictable routine: stim, seek entertainment, obsession, protest, melt down, stim, seek entertainment, obsession, protest, melt down etc... Many days in a row at this intensity could drain the best of us. When we add in the needs of the siblings, and stress of the parents, this situation could become exhausting very quickly. Difficult times often accompany long unstructured days at home. How can families improve upon this stressful prediction? How can they provide the supports needed to help children with autism stay emotionally well regulated, appropriately engaged, and cooperatively interactive with family members? 

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For more posts by and about Colette McNeil, click HERE.

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