Inclusion is a Matter of Life and Death: More Than We Realize

Inclusion is a Matter of Life and Death: More Than We Realize

Kelly Bermingham, Veronica Glickman
DOI: 10.4018/978-1-6684-5103-8.ch003
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Inclusion is considered a universal human right. It is about giving and ensuring equal access and opportunity and the removal of barriers to inclusion. When it comes to safety, this is an area that many on the autism spectrum have been denied true inclusion. Being able to evacuate in the event of a fire or disaster is inclusion. Not dying in a fire is inclusion. Safety protocols and training is necessary and needed for all families, children, and adults living with autism, as well as other developmental disabilities. Inclusion for safety starts here. Ways to ensure inclusion as it relates to safety, life, and death will be discussed in this chapter through the lens of applied behavior analysis.
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The National Institute on Mental Health (NIMH) describes Autism Spectrum Disorder (ASD) as a “neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave.”. Although autism can be diagnosed at any age, it is described as a “developmental disorder” because symptoms generally appear in the first two years of life.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects how people socially interact, communicate, learn, and behave. Some people with ASD may engage in repetitive patterns of behavior and have very narrow interests. These behaviors and interests impact their daily functioning and are usually present from early childhood.

Autism presents its own set of vulnerabilities. Safety becomes a big issue for someone with autism because of challenges with sensory issues, communication, and challenges with situational awareness, and recognizing danger. Sensory processing challenges can put children with autism in situations that are not safe, without realizing it. For example, a child who is sensitive to loud noises that others may not notice as loud may run from sounds into a dangerous situation such as a busy street. A child with autism who is nonverbal may not be able to communicate if they are lost or identify themselves to a first responder. A child with autism may have difficulties identifying if someone is a safe adult or a dangerous stranger.

Safety is not a skill that comes naturally to individuals with ASD. Children with disabilities are at a greater risk than neurotypically developing children. They may engage in wandering or elopement behavior due to their lack of safety awareness. They may want to play in the water, but they do not know how to swim. Their lack of swimming skills will not stop them from entering the water, which may lead to drowning.

Key Terms in this Chapter

Behavior Skills Training: A training technique that incorporates four key ingredients: instructions, modeling, practice, and feedback.

AAC Device: An augmentative and alternative communication (AAC) device. The term AAC device is often used interchangeably with terms like speech-generating device (SDG) or assistive communication device or simply communication device. AAC devices help users to communicate through a combination of words, sentences, and images that the device then “says out loud.” Additionally, users can also communicate by typing or drawing, sharing pictures and videos, or even repeating words they hear out loud.

Self-Stimulating Behaviors: Stereotypy or self-stimulatory behavior refers to repetitive body movements or repetitive movements of objects. These movements are used solely to stimulate one's senses. This behavior is common in many individuals with developmental disabilities; it appears to be most common in children and adults with autism.

Applied Behavior Analysis: A science devoted to the understanding and improvement of human behavior.

Generalization: Generalization is the ability of a student to perform a skill under different conditions (stimulus generalization), the ability to apply a skill differently (response generalization), and also to continue to exhibit that skill over time (maintenance).

Autism Spectrum Disorder: A neurodevelopmental disorder that affects how people socially interact, communicate, learn, and behave.

September 26th Project: The September 26 th project is a website in honor of Feda Almaliti to provide a checklist to assess and prepare safety preparedness for families living with autism.

Discrete Trial Training: A highly structured teaching technique based on the principles of applied behavior analysis. The teaching involves breaking skills down into smaller components and teaching those skills individually. Repeated practice of skills is conducted. Prompting and reinforcement procedures are utilized to facilitate the learning process.

Operant Behavior: Any behavior whose future frequency is determined primarily by its history of consequences.

Stimulus Reinforcer: A stimulus that strengthens or weakens the behavior that produced it. If a stimulus increases the frequency of a behavior it follows, then the stimulus is a reinforcer, by definition.

Prompting: Prompts are instructions, gestures, demonstrations, touches, or other things that we arrange or do to increase the likelihood that children will make correct responses. In other words, it is a specific form of assistance given by an adult before or as the learner attempts to use a skill.

Self-Injurious Behaviors: Self-injurious behavior (SIB) involves the occurrence of behavior that could result in physical injury to one's own body. Common forms of SIB include, but are not limited to, head-hitting, head-banging, and self-biting.

Person-Centered Planning: Person-centered planning (PCP) is a process for selecting and organizing the services and supports that an older adult or person with a disability may need to live in the community. Most important, it is a process that is directed by the person who receives the support.

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