On the Spectrum and in the System: Understanding Autism - National Commission on Correctional Health Care
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Apr 1, 2021

On the Spectrum and in the System: Understanding Autism

By Joyce J. Benjamin, PA-C (Emeritus), RN, and Michelle A. Grimes, MS, MBA

Autism spectrum disorder is currently diagnosed at a rate of 1 in 54 people, and the number is increasing by approximately 17% each year. That means that in an incarcerated population of 1,000 individuals, 18 or 19 have been diagnosed with ASD – not to mention those who have not been diagnosed. To effectively interact with and care for individuals on the autism spectrum, correctional health professionals need to recognize and understand their characteristics and behavior.

You may have encountered such a person in your work: a man or boy (ASD affects males 5 times more frequently than females) who does not make eye contact, answers questions in a seemingly random way, cannot seem to sit still, and possibly covers his ears. Consider that this person might not be defiant, mentally ill, or high. He might have autism spectrum disorder.

Autism is a neurodevelopmental disorder characterized by difficulties with social interactions, verbal and nonverbal communication, language, muscle control, adaption to change, and modulation of sensory input. It can affect the brain, cognition, emotions/behaviors, receptive/expressive language, motor functions, impulses, senses, and coping mechanisms. Most people with ASD suffer what is at times debilitating anxiety.

Although it can seriously limit daily activities, ASD is considered an “invisible disability” because many of its symptoms are largely unseen by onlookers, including fatigue, dizziness, learning differences, mental health disorders, hearing and vision impairments, allergies, and gastrointestinal problems. It presents in many ways and with varying degrees of severity, on a spectrum from Asperger’s syndrome (often referred to as “high-functioning autism”) to severe autism.

Recognizing ASD
People on the autism spectrum often seem “off” or “odd” and their behavior can be misconstrued as defiance. It’s important to know the signs and signals so that you can react appropriately – that is, calmly and patiently.

People with ASD generally adopt certain self-regulating behaviors to calm themselves. These adaptive behaviors help them function in a high-anxiety world.

One characteristic self-regulating behavior is known as stimming. It involves repetitive movements such as foot or finger tapping, fidgeting, hand flapping, finger flicking, rocking, twirling, and repeating words and sounds.

Acclimating allows an autistic person to adjust to their environment by wandering around the area, looking at and touching things and people. Touching, examining, or smelling things in a new environment is their way of adjusting and is almost always indicative of autism.

Many with autism have difficulty with eye contact and may appear to be ignoring you. They are single-track thinkers. It is probable that by not looking at you when you talk, they are concentrating on what is being said.

There are many other characteristics as well. Does this sound like someone you have treated or are currently treating?

  • Speaks more loudly than most people or speaks in a monotone
  • Is overly talkative and/or does not provide enough information to help you treat them
  • Seems to have a delay in processing what is said to them and requires more time to answer; may repeat questions without answering them
  • Creates confusion during triage and treatment
  • Rearranges things in the waiting room, office, or clinic
  • Chews on objects or self, pulls own hair out, or eats inappropriate things like dirt or paper
  • Becomes overwhelmed with too many instructions or questions
  • May cover ears when overwhelmed
  • Has verbal outbursts, such as loud squeals or shouts
  • Becomes combative when touched without permission, such as during lab draws, examinations, splinting, or wrapping

Handle With Care
Corrections is a very anxiety-producing environment for many who are incarcerated. For someone on the spectrum, it can be nearly impossible to manage. Decreasing the patient’s anxiety level will make any interaction easier and more productive for all involved.

If the behaviors outlined above are not hurting the individual or others, allow them to continue. Do not force eye contact as that may increase anxiety and cause the patient to withdraw or melt down. Focus on what is most important in the moment: the individual’s health.

  • Upon first meeting the patient, look for alert indicators that may indicate autism – on a wristband, necklace, or the like. Ask if the patient has any special needs you can accommodate.
  • Remain calm and patient. Speak softly and slowly. Use as few words as possible. You may have to repeat what you say.
  • Engage respectfully; remember, behavior does not equal
  • intelligence. Whenever possible, explain what you are going to do before you do it. Always ask before touching, and, if possible, avoid getting too close; it could lead to more anxiety or a cause the patient to shut down.
  • Know how to de-escalate if the patient melts down or becomes combative. Learn the five keys to de-escalation to diffuse the situation.
  • Take their side. Validate their viewpoint; say, “I agree. You’re right.”
  • Enlist their help. “I need your assistance with…”
  • Bargain with them. “If I will…, will you…?” Choose something appropriate, of course.
  • Distract them. Ask them to tell you about something you know interests them or to solve a simple math equation.
  • Call for a canine, if possible. Animals are very soothing.

Environmental Accommodations
For a person with autism, the environment inside of a correctional facility can be, at best, challenging, and at worst, horrifying. Certain environmental alterations can help, though it is often difficult to make these impromptu changes.

If possible, install a dimmer switch and turn down the lights, and provide a quiet space. If that’s not possible, consider noise-dimming headphones. Create sensory kits that contain items used to calm escalating behavior, such as weighted neck collars or blankets, fidgets, squeeze balls, puzzles, chewy items, and chewing gum or mints.

Everyone is safer when we have a better understanding of those who are “different” from us. While the autism spectrum is still somewhat mystifying, understanding the basics of how these individuals experience the world and how a correctional setting can exacerbate their characteristic behaviors can help soothe any encounter.   

For More Information

Joyce J. Benjamin, PA-C (Emeritus), RN, is cofounder and chief operating officer of Autism FYI and the mother of two adult sons with ASD. Michelle A. Grimes, MS, MBA, is training director for Autism FYI and a retired police sergeant.

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