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 Layla.

Layla recently noticed that Kyle's had increased trouble falling and staying asleep. Kyle is nonverbal, 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 understands 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. Laila 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 BPM, respirations 22 breaths per minute, BP 100/62 millimeters of mercury, 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. 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.

So does your body feel kind of busy when you're trying to sleep? Kyle nods yes.

Jared also asks Layelah for more details about her concerns with Kyle's sleep. Laylah 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.

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 of making sure to always shower, put your PJs on, brush your teeth, and 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?

Kyle nods and shows Jared a picture of his bed and a hug. Yes, the blanket will hug you.

Now, do you feel better when your room is loud or quiet at night? Kyle points to a picture of a dump truck and then music.

OK, you like to have some noise in your room at night. How about trying a sound machine that has different sounds you can choose from?

Kyle and Laylah both nod in agreement. Addressing both Layla and Kyle, Jared says, Let's see how the weighted blanket and noise machine help.

If you still need more help after you try these, we can talk about whether melatonin might help on some nights. It's a natural hormone that helps your body know when it's time to sleep.

Thank you. It's helpful to have these suggestions.

Kyle and I will start by picking out a weighted blanket for him and trying the sound machine too. Kyle shows Jared a picture of a sleeping boy.

Jared recognizes that Kyle and Layla understand the plan to help Kyle improve his sleep. Jared thanks Kyle and Layla and explains that Nurse Morgan will be in soon with more resources.

Nurse Morgan prepares a written patient education sheet with a summary of today's office visit. It lists the key points of the treatment plan in plain language, using an easy to read font along with illustrations to highlight different areas of the plan.

She enters the exam room and sits down. Hi, Kyle, she points to pictures of the moon and a bed on his patient education sheet.

After you get into bed at night and read a book, Layelah can give you this. It helps your body feel calm and sleepy.

She points to a picture of his prescribed melatonin. Kyle points to a picture of a bed.

Yes, right, you can take it right before sleep. Addressing Kyle and Leila, Nurse Morgan adds, I'll send this to you in digital format too, as well as a few other resources you can look over.

All right, as a quick recap, Kyle is a 12 year old boy with autism spectrum disorder, which is a developmental disability that can affect physical, learning, language, or behavioral functioning and may influence how he engages with and understands the care provided for him.

He's at his pediatrician's office with his caregiver Layla because of difficulties with sleep. Using respectful engagement and appropriate communication accommodations, the care team works together with Kyle and Laila to develop a treatment plan to improve Kyle's sleep.