
The first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. The following is a list of the more common medical problems that may be associated with behavior changes.
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Vision or hearing deficits
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Thyroid function
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Celiac disease
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Sleep apnea
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Anemia
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Gastroesophageal reflux
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Constipation
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Depression
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Anxiety
Evaluation by the primary care physician is a vital component of the initial work-up for behavior concerns in children and adults with Down syndrome.
Behavior Changes in Childhood and Adolescence
The behavioral challenges seen in children with Down syndrome are usually not particularly different from those seen in typically developing children. However, they may occur at a later age and last longer. For example, temper tantrums are typically common at ages two and three, but for a child with Down syndrome, they may begin at three to four years of age.
When evaluating behavior in a child or adult with Down syndrome it is important to know the individual’s receptive and expressive language skill levels, because many behaviors are related to frustration with communication. Many times, behavior issues can be addressed by finding ways to help the person with Down syndrome communicate more effectively.
Behavior Changes in Adulthood
Behavior changes in adults with Down syndrome have many potential causes. Some individuals have difficulty with the transition into adulthood as they face the loss of social networks, departure of older siblings, death of loved ones, changes in housing, and the challenge of obtaining meaningful work. As individuals age, some experience vision and/or hearing loss. These losses can cause significant behavioral changes if they are not recognized and treated. Hypothyroidism, celiac disease, obstructive sleep apnea, depression, regression, and Alzheimer’s disease are other health concerns that can cause behavior changes. Regular checkups with medical professionals who are familiar with the healthcare needs of adults with Down syndrome are the best way to quickly identify or avoid these conditions.
Regression is a relatively new diagnosis that refers to a loss of previously accomplished skills that usually occurs in late childhood or early adulthood. The loss can occur over weeks or months and might include skills like language, motor abilities, self-care, and social interaction. Regression can have a few different causes and should be thoroughly investigated by a medical doctor. It is recommended you schedule an appointment with your doctor if you notice your loved one has begun withdrawing from friends and family, speaking less, decreasing eye contact, engaging in compulsive behaviors, hallucinating, or acting aggressively. Regression is different from Alzheimer’s disease and can be reversible in some situations with treatment.
While Alzheimer’s disease occurs earlier and more often in adults with Down syndrome than in the general population, not every behavioral or cognitive change in an adult with Down syndrome is due to the onset of Alzheimer’s disease. Alzheimer’s disease has an average age of onset of 54 years in individuals with Down syndrome. To learn more about Alzheimer’s disease in individuals with Down syndrome, please check out our free guidebook here.
Additional Resources
External Resources
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Association for Positive Behavior Support
An international organization dedicated to improving the support of individuals in order to reduce behavioral challenges
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Behavior and Down Syndrome: A practical Guide for Parents by. Dr. David Stein
Dr. Stein’s guide is specifically designed to support positive behavior for children with Down syndrome, providing sound, practical advice for parents and families of children with Down syndrome. -
Center for Parent Information and Resources
CPIR is a central source of information on pre-adolescents and teens with disabilities. It features a clear and detailed guide to IDEA, the law authorizing early intervention services and special education, and State Resource Sheets to help you connect with disability agencies and organizations in your state -
National Association for the Dually Diagnosed (NADD)
An association for persons with developmental disabilities and mental health needs -
Positive Behavioral Interventions and Support Technical Assistance Center
Established by the Office of Special Education Programs, US Department of Education to give schools information and technical assistance for identifying, adapting, and sustaining effective disciplinary practices
Books
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Body Talk, Teaching Students with Disabilities about Body Language. Crissey, Pat. Bethesda, MD: Woodbine House. (2013)
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From Behaving to Belonging: The Inclusive Art of Supporting Students Who Challenge Us. Causton, J., MacLeod, K. Alexandria, VA: ACSD. (2020)
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Supporting Positive Behavior in Children and Teens with Down Syndrome. Stein, D. Bethesda, MD: Woodbine House. (2016)