These misconceptions are largely a result of two contributing factors: 1 the syndrome itself has changed so fundamentally for the better with the dismantling of the inhumane institutions where people with Down syndrome were previously forced to live, and. The Global Down Syndrome Foundation GLOBAL is dedicated to correcting misconceptions and over time providing funding for research that will better address medical and cognitive issues associated with the condition. The CDC research shows that the chances of having a baby with Down syndrome does increase with age.
However, younger women have more babies, so more children with Down syndrome are born to younger mothers. Reality : A recent Vanderbilt Kennedy Center study published in the American Association of Intellectual Disabilities indicates that divorce rates are lower in families of children with Down syndrome. The study was one of the largest to date and included families who have children with Down syndrome.
Reality : Studies do not support that a child with Down syndrome will have a negative impact on siblings. For example, a recent study published in the Journal of Intellectual Disability Research found no long-term detrimental effects to siblings. In fact, some mental health professionals point to the psychological advantages of such a child cared for within the family circle. They have documented siblings who have increased tolerance, compassion and awareness, in contrast to all typical siblings.
Reality : The average life expectancy for a person with Down syndrome is nearly 60 years old. Some people with Down syndrome have lived into their 80s. Unfortunately, the average life expectancy for an African-American in the U.
This appalling statistic deserves the full attention of our government and scientific community. Reality : An inability to walk is not a characteristic of Down syndrome. The Down syndrome advantage is generally the most robust when children who have Down syndrome are compared with children who have autism Abbeduto et al.
For instance, Hodapp and Urbano found that children with Down syndrome have closer, warmer relationships with their siblings than do children with autism. However, some of the main difficulties with autism are related to problems with social interactions and relationships.
Furthermore, the behavioral problems intrinsic to autism may make rearing these children particularly difficult for families.
Therefore, autism may be an inappropriate comparison group with regard to demonstrating a Down syndrome advantage. Other research that challenges the existence of a Down syndrome advantage suggests that a failure to control for confounding variables may contribute to the finding of an advantage. Thus, researchers who do not control for potentially confounding demographic variables may inappropriately support the Down syndrome advantage.
Maternal age is an especially important variable to control in studies with samples containing mothers of children with Down syndrome. These mothers are generally older than mothers of children with other developmental disabilities because the likelihood of having a child with Down syndrome increases with age. Furthermore, because mothers and fathers of children with Down syndrome are generally older and more senior in their jobs, these families often have higher incomes.
Researchers who do not control for the confounding variable of maternal age may have results that wrongly support the Down syndrome advantage. For example, the findings of Abbeduto et al. In other instances, it is unclear whether reported research fails to control for confounding variables. In their research supporting the Down syndrome advantage, Blacher and McIntyre reported demographic differences between ethnic groups rather than diagnostic groups.
Without controlling for diagnostic group differences, Blacher and McIntyre may have incorrectly supported the existence of the Down syndrome advantage. Whether and why this difference between children with Down syndrome and those with other developmental disabilities exists has importance for family counseling as well as education and treatment.
If a Down syndrome advantage is confirmed, then this positive aspect of the syndrome should be conveyed to parents at the time of the original diagnosis and should inform subsequent professional—parent partnerships. Moreover, understanding why the advantage occurs would allow more precision in the way counseling, education, and treatment progresses. For example, if the Down syndrome advantage is exclusively an artifact of maternal age, then younger mothers who give birth to the majority of children with Down syndrome should not be encouraged with false expectations.
They might, however, appreciate the information that there is a change for the better that might come with age. Also, if it is conclusively established that an important reason for the advantage is higher levels of adaptive behavior, then adaptive behavior gains can be prioritized in treatment and education protocols for all children with developmental disabilities, which will, in turn, reinforce even more positive adjustment in families.
In the current study, we examined whether mothers of children with developmental disabilities would demonstrate a Down syndrome advantage. Specifically, we compared mothers of children who have Down syndrome with mothers of children who have other developmental disabilities on several maternal functioning variables, including depression, subjective well-being, personal and family adjustment to rearing a child with disabilities, and the rewards and worries associated with the child's transition into adulthood.
We also examined the stability of parental adjustment and the Down syndrome advantage with longitudinal data spanning children's age from 12 to 18 years old. As confounding variables may account for past research in support of the Down syndrome advantage, the current study controlled for any variables hypothesized to impact maternal functioning or that differed between diagnostic groups, such as maternal age.
Our participants are a subset of a longitudinal study that originally consisted of adoptive and birth families with at least one child with a developmental disability. The sample in the present study includes mothers rearing children with developmental disabilities.
The Down syndrome group of this sample consists of 56 mothers who have at least one child with Down syndrome, and the other developmental disabilities group includes 64 mothers who have at least one child with any other form of developmental disability. Adoptive families constituted The disabilities of the 64 children in the other developmental disabilities group included cerebral palsy In the other developmental disabilities group, In the Down syndrome group, Table 1 presents the demographic characteristics of the mothers and children by diagnostic group.
Although the two diagnostic groups were similar on most variables, for mothers, there were significant differences between the Down syndrome group and the other developmental disabilities group on two demographic variables. In addition, we found significant diagnostic group differences for three child characteristics. Mothers completed various measures of family and personal well-being for four separate time points over the course of 16 years.
Upon entry into the study Time 2 , they participated in a semi-structured interview that included a comprehensive assessment of the family's background and the adjustment to living with a child with a developmental disability. Retrospective information that focused on the child's entry into the family served as data for Time 1.
Follow-up data for Times 3 and 4 were collected through measures completed by mail or telephone interview. For the present study, the statistical analyses include data from Time 3 and Time 4 only. These two times of measurement were separated by an average of 6. The BDI includes 21 items that require the respondent to choose statements, rated from 0 to 3, that reflect the severity of each symptom of depression.
Possible scores range from 0 to 63, with higher scores indicating greater depression. Mothers completed the BDI at Times 3 and 4. The QRS Holroyd, , which was used in an adapted item form Glidden, , measures personal and family adjustment to living with a child with disabilities. The adapted item form contains the same items from these three subscales as the original QRS.
The three subscales were: Family Disharmony disagreement and conflict within the family , Lack of Personal Reward the social and personal consequences of rearing the child , and Personal Burden the demands and responsibilities associated with child-rearing.
Possible scores on each subscale range from 0 to 6, with higher scores indicating poorer functioning. Mothers completed the QRS at Times 3 and 4. Lower scores indicate greater subjective well-being related to the child. The TDRWQ, recently developed by Glidden and Jobe , was designed to measure the rewards and worries that parents experience as their children transition into adulthood. It is a item inventory composed of five factors: Positive Future Orientation respondent's general feeling regarding the child's future , Community Resources respondent's feelings toward the child's job preparation and independent living , Financial Independence respondent's perception of the child's likelihood of becoming financially self-supporting , Family Relations 3 items that measure rewards and worries associated with general family functioning , and Family Relations With Sibling Items 3 items from the Family Relations subscale along with an additional 7 items that assess sibling relationships.
Higher scores are indicative of more rewards and fewer worries. This instrument, developed by Lambert, Nihira, and Leland , measures children's level of functioning and ability to cope with the natural and social demands of the environment. Part Two of the ABS assesses children's maladaptive behavior and consists of two main factors: Social Adjustment social behavior, conformity, and trustworthiness and Personal Adjustment self-abusive, stereotyped, and hyperactive behavior.
Higher scores on Part One and Two are desirable and indicative of greater levels of adaptive behavior for Part One and lower levels of maladaptive behavior for Part Two. Because the children with other developmental disabilities were significantly older than those with Down syndrome, which resulted in the confounding of diagnostic group with age, we needed to correct the adaptive behavior age equivalencies.
People with Down syndrome usually have an IQ a measure of intelligence in the mildly-to-moderately low range and are slower to speak than other children. Down syndrome remains the most common chromosomal condition diagnosed in the United States.
Each year, about 6, babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every babies. There are three types of Down syndrome.
There are two basic types of tests available to detect Down syndrome during pregnancy: screening tests and diagnostic tests. A screening test can tell a woman and her healthcare provider whether her pregnancy has a lower or higher chance of having Down syndrome.
Screening tests do not provide an absolute diagnosis, but they are safer for the mother and the developing baby. Diagnostic tests can typically detect whether or not a baby will have Down syndrome, but they can be more risky for the mother and developing baby.
For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers -- perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.
What will the impact of these new tests be on the number of babies born with Down syndrome, since it is now easier to make a diagnosis without risking miscarriage? Says Natoli, "I cannot predict if the termination rate will go up, down, or stay the same. A lot of people think it will go up, but I wouldn't be surprised at all if it went down. My guess is that new tests will have little impact. They are much easier to understand than the old ones, and eventually insurance companies will pay for them for most women.
I suspect that in 10 years most women carrying a fetus affected with Down syndrome will receive a diagnosis early in their pregnancy. This will mean that more women will have to make the gut-wrenching decision about whether to continue the pregnancy or abort. And I predict that the number of babies born affected with Down syndrome will stay about the same.
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