Caring for patients with developmental disabilities (Case study)

Kyle is a 12-year-old boy with autism spectrum disorder, or ASD. He’s at his pediatrician’s office with his caregiver, Leila. Leila recently noticed that Kyle has had increased trouble falling and staying asleep. Kyle is non-verbal, so he uses an electronic tablet with an app for augmentative and alternative communication, or AAC, that allows him to point at pictures and symbols to help him communicate.

Now, developmental disabilities like ASD are lifelong conditions that arise during the developmental period, often before birth or in early childhood. These disabilities can affect a person’s physical, learning, language, or behavioral functioning, all of which can influence how a patient engages with and understand their care. Other abilities, like functional abilities, such as being able to get dressed, read, or manage money, can vary widely from person to person.

ASD causes are multifactorial, involving interactions among genetic, prenatal, environmental, and other biological factors that influence early brain development, though the exact cause is often unknown.

ASD may involve challenges with social interaction, behavior, and communication.

Sleep problems are more common in children and teens with ASD. This can be due to differences in regulation of brain chemistry, particularly melatonin, as well as increased sensitivity to sensory input like light, noise, or even textures from bedding or pajamas – all of which can cause challenges with bedtime routines.

Management often includes both pharmacological and non-pharmacological strategies.

Leila and Kyle are escorted to the exam room by Cheryl, the medical assistant. Cheryl tells them that she’ll check each of Kyle’s vital signs.

She explains in simple terms what she is doing while showing him the equipment and giving Kyle time to examine and adjust to each new piece of equipment.

Kyle’s vital signs are temperature 97.7 F or 36.5 C, heart rate 94 beats per minute, respirations 22 breaths per minute, blood pressure 100/62 mmHg, and oxygen saturation 98% on room air. Next, Leila gives Cheryl Kyle’s sleep diary, and the information is entered into the electronic health record, or EHR. Before leaving, Cheryl asks if they have any questions and lets them know that Jared, the nurse practitioner, will be in shortly.

After reviewing the sleep diary and notes in the EHR, Jared prepares for his interaction with Kyle and Leila. He keeps in mind the need for respectful engagement, accessible communication, and reasonable modifications that support Kyle’s participation in care.

He enters the exam room, introduces himself to Kyle and Leila, and sits down at eye level with Kyle.

Jared: “Hi Kyle, my name is Jared and I want to help you get some sleep. When you lie down at night, how does your body feel?”

Kyle shows Jared his tablet with a boy running.

Jared: “So, does your body feel kind of busy when you are trying to sleep?”

Kyle nods, yes.

Jared also asks Leila for more details about her concerns with Kyle’s sleep. Leila explains that Kyle is having a hard time settling down in the evenings, and even after he goes to bed, she often hears him pacing during the night.

Next, Jared discusses the treatment plan with Kyle and Leila, making sure to give Kyle enough time to process each question and respond without rushing him.

Jared: “Having a structured bedtime routine and always following it helps your body know when to feel sleepy. In your sleep diary, it seems like you do a great job making sure to always shower, put your PJs on, brush your teeth, then read a book in bed. After you get in bed, you could also try adding a weighted blanket that would hug your body and help you feel calm. What do you think about that?”