So, your child with trisomy 21 (T21) now has a secondary diagnosis of autism spectrum disorder (ASD). You may have questions about this new diagnosis and what it means for the day-to-day life of your child and family. It’s important to understand your child and how a dual diagnosis of T21 and ASD may impact their daily activities. This article focuses on helpful tips and strategies when teaching your child new skills and helping them take part in self-care tasks.

Occupational therapists (OTs) focus on the activities your child wants or needs to do. OTs consider self-care skills to be tasks such as brushing hair and teeth, bathing, toileting and self-feeding. Children with trisomy 21 can achieve independence with self-care skills, however, they typically need extra practice and time to master skills compared to their peers. 

Trisomy 21 can affect a child’s ability to solve problems, sequence tasks, and coordinate muscles in their body, which can affect how quickly they learn new skills. In the case of a dual diagnosis, children with ASD and T21 can have more difficulty learning new tasks. Exercising patience and recognizing that your child may have more difficulty learning new skills is essential. 

When learning new tasks, pick a time in the day when there is less pressure to complete tasks quickly. For example, practice dressing skills in the evening with pajamas rather than in the morning when your family is trying to hurry out the door. It’s important to practice new skills when you have time to allow your child to problem-solve and work through how to complete the new task.

A helpful tool to teaching new skills is breaking down the activity into steps through backward chaining. Backward chaining is the process of helping your child through all the steps of a task, then teaching them to complete the last step by themselves. Once they can do the last step, you will teach them the second to last step, and so on. Provide lots of positive encouragement when they complete the task. This method of breaking down the task reduces demands on your child while they are learning and helps them to feel accomplished by mastering an easier skill first. For more information on backward chaining, view this link. You can also ask your child’s OT about chaining techniques. 

Children with a dual diagnosis of T21 and ASD may also develop verbal communication skills slower than their peers. When teaching a new self-care skill, it can be helpful to use picture schedules. Picture schedules show the steps to an activity using pictures. For example, you can place a picture schedule in the bathroom for washing hands, which could include a picture of a child turning on the faucet, placing their hands under the water, obtaining soap, rubbing their hands together, drying their hands with a towel or paper towel, and turning off the sink. This tool helps your child learn the sequence of tasks through visual cues and helps the child interact with the task. Your child can look, sign, speak, or point at the pictures as they are completed, and anticipate what step comes next. Your child’s OT may be able to provide you with support or help create a picture schedule for your child. 

Some children with a dual diagnosis of ASD and T21 struggle with the sensory aspects of self-care tasks. Discuss this at your next Trisomy 21 clinic appointment or talk with an occupational therapist if you have concerns about your child’s sensitivity to certain textures/sensations and how it is affecting their self-care. See the following article on sensory diets as well. 

Things to remember: 

1. Practice, patience and never hesitate to reach out to a provider for extra tips and tricks.
2. Teach and practice new skills at less rushed times of the day. 
3. Break the tasks into steps and use backward chaining.
4. Consider using pictures, signs, and other non-verbal communication when teaching new skills. 
5. Talk with your child’s care provider if you believe your child’s sensory needs are affecting their self-care. 
6. Encourage and praise your child for their continued participation in self-care tasks!

References

1. Godfrey M, Hepburn S, Fidler DJ, Tapera T, Zhang F, Rosenberg CR, & Raitano Lee N (2019). Autism spectrum disorder (ASD) symptom profiles of children with comorbid Down syndrome (DS) and ASD: A comparison with children with DS-only and ASD-only. Research in Developmental Disabilities, 89, 83–93. https://doi.org/10.1016/j.ridd.2019.03.003
2. Bradbury KR, Anderberg EI, Huang-Storms L, Vasile I, Greene RK, & Duvall SW (2022). Co-occurring Down Syndrome and Autism Spectrum Disorder: Cognitive, Adaptive, and Behavioral Characteristics. Journal of Autism and Developmental Disorders, 52(3), 1235–1246. https://doi.org/10.1007/s10803-021-05016-6

Developed by Thomas Jefferson University OTD Student Emily Ashton for Children’s Hospital of Philadelphia as part of Occupational Therapy Doctoral Capstone 2023-2024. Overseen by on-site mentor Jordan Wentz, Children’s Hospital of Philadelphia, and faculty mentor Erin Lynn, Thomas Jefferson University, 01/22/2024.