With Sensory Kits, Pennsylvania Service Better Helps Autistic Kids

Thanks to a grant partnership with the Schreiber Center for Pediatric Development—a nonprofit organization serving central Pennsylvania that offers innovative therapy, education, and recreation resources for children, teens, and young adults—Lancaster EMS, a nonprofit public safety organization that provides primary 9-1-1 emergency and nonemergency medical services to 21 municipalities in Pennsylvania’s Lancaster County, is “sensory prepared” to manage autistic children.

Lancaster EMS units now carry special “sensory bags” that can be used by EMTs and paramedics on emergency calls involving pediatric patients with sensory disorders such as autism.

Sensory Processing Disorder, Autism Spectrum Disorder

First responders are accustomed to bright lights and loud noises at emergency scenes, but for individuals with sensory processing disorder (SPD), these sights and sounds can be debilitating. Children with autism can get overstimulated quickly dealing with emotion and have difficulty coping with loud noises and the flashing lights of an ambulance. In emergencies keeping patients calm is vital so assessments can be performed and care provided.

EMS personnel are currently taught very little about autism spectrum disorder (ASD), so they are usually not aware of what triggers fear or emotions in those with autism, particularly children, while they or a parent are being cared for during an emergency.

Autism Spectrum Disorder (ASD)

The word autism originates from the Greek word auto, meaning self, and describes a condition where persons are removed from social interaction—hence an isolated self.¹

ASD is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition, but other causes are not yet known. Scientists believe there are multiple causes of ASD that act together to change the most common ways people develop.²

Autism spectrum disorder (ASD) is 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 2 years of life. Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.²

While people with ASD look the same as anyone else, they often behave, communicate, interact, and learn in ways different from most other people, and their abilities can vary significantly. For example, some may have advanced conversation skills whereas others may be nonverbal. Some need a lot of help in their daily lives; others can work and live with little to no support.²

ASD begins before the age of 3 and can last throughout a person’s life, although symptoms may improve over time. Some children with ASD gain new skills and meet developmental milestones until around 18–24 months of age, and then they stop gaining new skills or lose the skills they once had.²

ASD occurs in 1 in 68 children and in all racial, ethnic, and socioeconomic groups, and it’s more than 4 times more common among boys than girls.²

As children with ASD become adolescents and young adults, they can have difficulties developing and maintaining friendships, communicating with peers and adults, and understanding what behaviors are expected in school or on the job, as well as emergency scenes where they or a loved one are involved.

They may come to the attention of health care providers because they can also have conditions such as anxiety, depression, or attention deficit/hyperactivity disorder, which occur more often in people with ASD than in people without.²

Autistic children experience delays in speech development, so they may not be able to communicate at all or may have difficulty interpreting body language, respecting personal space, or holding a conversation. Autistic individuals often have very restricted interests and prefer repetitive motions such as flapping, spinning, or twisting. These repetitive behaviors often become more pronounced when the individual is under stress or heightened anxiety.

People with ASD often have problems with social communication and interaction and restricted or repetitive behaviors or interests. They may also have different ways of learning, moving, or paying attention.² While others in the general population may also have some of these symptoms, for people with ASD these characteristics can make life very challenging.

They may also have a hyper- or hyposensitivity to sound, light, touch, pain, or other external stimuli. This puts the autistic individual at a greater risk of injury, as sensations such as hot and cold may be interpreted differently.³ And they may react (or overreact) to a cold stethoscope placed on their chest, a BP cuff pumped up rapidly on their small arm, an ice or hot pack, EKG patches, tape or gauze pads, or an IV inserted in their skin. Oral medications may be especially repugnant to them.³

Social communication/interaction behaviors may include:⁴

• Making limited or inconsistent eye contact;
• Appearing not to look at or listen to you when you talk to them;
• Infrequently sharing interest, emotion, or enjoyment of objects or activities (including by infrequently pointing at or showing things to others);
• Not responding or being slow to respond to their name or other verbal attempts to get their attention;
• Having difficulties with the back and forth of conversation;
• Often talking at length about a favorite subject without noticing that others are not interested or giving others a chance to respond;
• Displaying facial expressions, movements, and gestures that do not match what is being said;
• Having an unusual tone of voice that may sound “sing-song” or flat and robotlike;
• Having trouble understanding your statements or point of view or being unable to predict or understand your actions;
• Have difficulty adjusting behaviors to social situations;
• Difficulties sharing in imaginative play or making friends.

Restrictive/repetitive behaviors may include:⁴

• Repeating certain behaviors or having unusual behaviors, such as repeating words or phrases (echolalia);
• Having a lasting intense interest in specific topics, such as numbers, details, or facts;
• Showing overly focused interests, such as with moving objects or parts of objects;
• Becoming upset by slight changes in routine and having difficulty with transitions;
• Being more or less sensitive than other people to sensory input such as light, sound, clothing, or temperature (an important aspect for EMS personnel to remember);
• Sleep problems and irritability.

People on the autism spectrum also may have many strengths, including:

• Being able to learn things in detail and remember information for long periods of time;
• Being strong visual and auditory learners;
• Excelling in math, science, music, or art.

Almost everyone with autism experiences sensory processing challenges.¹  

Lancaster Sensory Project, Kits

Lancaster EMS is the only nationally accredited ambulance service provider in Lancaster County. Its EMS mission is to provide comprehensive, skillful, and cost-effective emergency and nonemergency health care services to the Lancaster community while evolving with changing health care needs.

Recognizing the need for special training and activities to help autistic children relax while being cared for during an emergency or accompanying a parent who needs emergency care, EMT Saranika Griffith, whose 5-year-old son Tyler is autistic, spearheaded the sensory project because she knew ambulance service agencies weren’t as prepared as they could be to handle emergency calls for kids with special needs.

As an EMT Griffith saw kids with autism respond negatively to the noise of the siren and glare of ambulance lights. She was particularly aware of how those kids responded because of her personal experiences with her son.

The Clark Family Foundation provided $5000 for this project to enable Lancaster EMS providers to have these specially equipped sensory bags available for use on calls involving children with autism or other behavioral or anxiety issues. Two hundred sensory bags were ordered, along with 150 sensory preparedness decals that were placed on the 30 frontline vehicles. Decals need to be replaced often because the vehicles are washed so frequently.

As a parent and patient with autism, Griffith speaks highly of the partnership project.

“In emergency situations, kids can be so overstimulated and not able to say what’s upsetting them,” she says. “And in many cases an EMS provider might not know how to calm them down.

“I’m overwhelmed by the success of this project. I’ve spent many years having this near and dear to my heart. To see my EMS agency take such an active interest in what I feel so strongly about… I’m so thankful.”

In November 2020 Schreiber’s director of therapy services, Angie Rice, provided the first training to Lancaster EMS staff on how to use the bags. The session was recorded for future viewing, and all Lancaster EMS staff completed the training by the end of December 2020.

The fully equipped bags, which the patient can keep, were placed on the vehicles during the first week of January 2021. Since that time the bags have been used by 3 adults and 9 pediatric patients with autism or other diagnoses, such as Down syndrome.

“I loved the idea,” Rice says. “Anybody in the community should be aware of how to help these kids when they are in a challenging (emergency) situation. There are a lot of discussions now on de-escalation techniques, where a police officer or EMS provider encounters someone who is angry or upset, and you learn how to bring them back to a more rational state of mind. This hopefully will help avoid having a bad outcome for one of these calls. The Schreiber Center for Pediatric Development wants people to know the needs these kids have so they can be OK in any situation—it’s another piece of the work we do to help families.”

Deputy Chief Jerry Schramm, director of operations for Lancaster EMS, says, “The addition of the sensory bags has provided another useful tool in our equipment cadre. Generally, EMS clinicians have limited training and equipment to care for the special needs population. This addresses that need.”

Paramedic Carli Bechtold experienced the benefits of the kits soon after they were placed. “I used the sensory bag with a 6-month-old baby who had fallen off the bed at the hotel he was staying in with his mother and aunt,” Bechtold says. “Initially he was calm while Mom was holding him but began crying once secured to the litter. I used the light-up bounce ball to keep him occupied, which it did. He immediately stopped crying and became fixated on the lights. He started smiling and did so for the rest of the transport.”

Through the provided staffwide training and placement of sensory bags on all ambulances and frontline response vehicles, Lancaster EMS clinicians are now more prepared to deliver optimal care to their patients, which contributes to positive clinical outcomes.

Getting the Word Out

A project of this nature is beneficial to emergency responders and the autistic patients they serve, so it was important for the community to be informed and educated about the purpose and benefits of the sensory kits. Lancaster EMS informed the media about the sensory kit project, and it began to get regional and statewide attention and adoption. The local newspaper featured an article about the project in January 2021. The local NBC and ABC broadcast affiliates featured stories about the sensory bags. The project was also discussed on a podcast developed by the Emergency Health Services Federation in south-central Pennsylvania and shared with 8 other EMS agencies.

Penn Medicine Lancaster General Health’s Level I trauma center has also implemented sensory preparedness kits for trauma patients with autism with positive results. The American Trauma Society’s Pennsylvania Division embraced this project and has applied for grant funding to help distribute kits throughout the commonwealth.

For more information on Lancaster EMS, visit www.lemsa.com. For more information on the Schreiber Center for Pediatric Development, visit www.schreiberpediatric.org.

Sidebar: What’s In the Bag?

Items in the bags, all sanitized and individually packaged, include:

• Laminated picture/pain charts that can be used to describe feelings and what parts of the body are causing discomfort (especially if the patient has trouble communicating);
• Noise-canceling headphones;
• A whiteboard and markers children can draw on;
• A soft, spongy blue light-up stress ball;
• A small pair of sunglasses;
• A plastic bottle of bubbles;
• A chewy necklace; and
• A fidget toy.

Sidebar: Response Considerations

In a 2014 article in EMS World,³ Tina Bechtel, RN, BSN, CSN, MS Ed, EMT-B, a school nurse in Pennsylvania and EMT at Hershey Park, a popular amusement attraction, discussed considerations for EMS providers responding to autistic children and offered some additional tips:

• Avoid the use of lights and sirens when possible. This will help reduce the anxiety of those who are hypersensitive to external stimuli.
• Limit the number of caregivers, allocating a key individual to the patient so the patient can better understand what is happening to them.
• Utilize the patient’s caregivers whenever possible, allowing the caregiver to accompany the patient during transport. They can be invaluable interpreters.
• Provide direct requests using simple language. If you say, “Can you move over here?” the autistic patient may not understand you are asking them to move. Instead say, “Please move over here.”
• If transporting the patient, consider the response autistic individuals may have to the safety straps on a stretcher. Explain the purpose of the straps before application.
• Inform the receiving facility of the patient’s diagnosis. A hallway bed may be unbearable for the autistic patient. Be sure to communicate any specific approaches that have proven successful with your patient.
• Look for the less obvious. Remember that autistic individuals may be less aware of danger, give misleading statements, or not be able to communicate the extent of trauma. Use clues from the patient’s environment and bystanders’ accounts to obtain a complete picture of the situation.
• Minimize distractions, providing very deliberate care with a distal-to-proximal approach. Explain each move before proceeding.
• Recognize that although the individual may be nonverbal, autistic patients often have remarkable and intact receptive abilities. Remember, too, that they are literal thinkers. Avoid idioms or other figures of speech such as, “This will only hurt for a minute.”
• Allow the patient to perform self-stimulating activities (such as those offered in the Lancaster sensory kits) unless it would compromise other care. These activities may be patients’ ways of calming and comforting themselves.
• Remember that autistic patients may be hyper- or hyposensitive to tactile stimuli or EMS supplies or treatment modalities.
• Assess for pain, recognizing that autistic individuals may not respond to commonly used instruments such as the Wong-Baker FACES pain rating scale due to their inability to read facial expressions.

References

1. WebMD. Your Guide to Autism. Accessed August 5, 2022. www.webmd.com/brain/autism/default.htm

2. Centers for Disease Control and Prevention. What is Autism Spectrum Disorder (ASD)? Accessed August 5, 2022. www.cdc.gov/ncbddd/autism/facts.html

3. Bechtel T. Considerations for EMS Response to Autistic Patients. EMS World. Published March 28, 2014. Accessed August 5, 2022. www.hmpgloballearningnetwork.com/site/emsworld/article/11362588/considerations-ems-response-autistic-patients

4. National Institute of Mental Health. Autism Spectrum Disorder. Accessed August 5, 2022. www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

Marisa J. Seubert, BS, is the director of marketing and development for Lancaster EMS in Pennsylvania.

Saranika Griffith, EMT, is an EMT with Lancaster EMS in Pennsylvania.

Valerie A Ritter, MSN, is director of emergency services at Penn State Health, Lancaster, Pennsylvania.

Michael J. Reihart, DO, FACEP, FAEMS, is medical director of emergency services at Penn State Health, Lancaster, Pennsylvania, and regional medical director for the Emergency Health Services Federation in south-central Pennsylvania.

AJ Heightman, MPA, EMT-P, is editor emeritus of JEMS, chief development officer and senior advisor with Cambridge Consulting Group, and neuroprotective CPR registry advisor with Advanced CPR Solutions.