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Developmental Issues


Question

Will my brother, who has mild CdLS, be able to grow up like a boy without CdLS?

Answer of our experts

Each individual with CdLS is different and, as with any child, it is difficult to predict what his life will be like when he grows up. However, there are probably some generalizations that are safe to make. Since your brother is mildly affected with CdLS, he will certainly continue to make some advances in his physical, emotional, and developmental growth in the upcoming years. Like other boys, he will go through the typical changes associated with puberty. As he matures, your family will probably strive to have him become more independent in activities of daily living, such as bathing, hygiene, dressing, picking up after himself, helping out with chores, etc. Some of these he may learn easily, while others may require more assistance from family and take longer to master. In some individuals with CdLS, there may be tasks that are beyond their ability to learn and, therefore, always be areas that require outside help to complete.

Depending on his level of functioning, he will probably always require a certain level of supervision at home and in the community to insure his safety. This most likely means that as he becomes an adult he will probably continue to live with family or move on to some type of supervised living arrangement depending on your family's wishes and his needs.

One area that most individuals with CdLS struggle with is socialization and friendships. While some are fortunate to find friends among their peers, others never seem to find their niche. This seems to be especially the case with the more mildly affected persons who don't quite fit in with either their developmentally delayed peers or with their non-affected peers. Most families find that the individual with CdLS will require much assistance in connecting with others and making friends. Families find that they are often the main source of meeting the individual's socialization needs, but this is very important for self-esteem.

BC/TK 7-13-10

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Recommendation(s)

Ability to move around and manipulate the environment

R16
Developmental milestones should be closely monitored.

Recommendation(s)

Social functioning including ASDs

R56
A clinical diagnosis of autism spectrum disorder (ASD) should be considered in all individuals with CdLS throughout life, taking into account atypical presentations.
R57
R57: In addition to standardised ASD diagnostic tools, fine-grained observations should be carried out to accurately define the profile of social functioning in an individual with CdLS.
R58
ASD-specific interventions should be considered in all individuals with CdLS in combination with approaches that consider the broader social functioning profile of the syndrome.

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Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

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