Access to Genetic Counseling for Children With Autism, Down Syndrome, and Intellectual Disabilities

PEDIATRICS ◽  
2009 ◽  
Vol 124 (Supplement 4) ◽  
pp. S443-S449 ◽  
Author(s):  
Robert J. McGrath ◽  
David J. Laflamme ◽  
Amy P. Schwartz ◽  
Michelle Stransky ◽  
John B. Moeschler
Keyword(s):  
Down Syndrome ◽  
Genetic Counseling ◽  
Intellectual Disabilities ◽  
Children With Autism

Parenting the Child With Down Syndrome: Understanding—but Going Beyond—the “Down Syndrome Advantage”

2020 ◽  
Author(s):  
Robert M. Hodapp ◽  
Ellen G. Casale
Keyword(s):  
Socioeconomic Status ◽  
Down Syndrome ◽  
Behavior Problems ◽  
Prenatal Testing ◽  
Children With Autism ◽  
Facial Features ◽  
Cultural Resources ◽  
Noninvasive Prenatal Testing ◽  
Birth Parents ◽  
Children With Down Syndrome

Compared to parents of children with other types of intellectual disabilities, parents of children with Down syndrome experience less stress and more rewards, although this “Down syndrome advantage” mostly occurs compared to parents of children with autism and before groups are equated. Behaviorally, children with Down syndrome display more sociable interactional styles and baby-faced facial features, along with fewer instances of severe behavior problems. Demographically, parents of children with (versus without) Down syndrome average 5 years older when giving birth; parents are more often well educated, married, of higher socioeconomic status, and they likely provide these children greater financial and cultural resources. In most industrialized societies, rates of Down syndrome seem steady, with easily available, noninvasive prenatal testing counteracted by increasing numbers of women giving birth at older ages. Parenting children with Down syndrome relates to characteristics of children, their parents, and society, all of which intersect in important, underexplored ways.

scholarly journals Integrating a Geneticist in a Multidisciplinary Clinic for Down Syndrome Increases Commitment to Genetic Counseling

2017 ◽  
Vol 2 (5) ◽  
pp. e039
Author(s):  
Stephanie L. Santoro ◽  
Theodora Jacobson ◽  
Stephanie Lemle ◽  
Thomas Bartman
Keyword(s):  
Down Syndrome ◽  
Genetic Counseling ◽  
Multidisciplinary Clinic

scholarly journals Psychological Stress Among Mothers of Children with Autism Spectrum Disorder and Down Syndrome in the City of Kufra

2021 ◽  
Vol 2 (1) ◽  
pp. 29-41
Author(s):  
Mansour Mohammed Ali Bopaeda
Keyword(s):  
Autism Spectrum Disorder ◽  
Down Syndrome ◽  
Psychological Stress ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Autistic Children ◽  
Children With Down Syndrome ◽  
Level Of Significance ◽  
The City

Having a baby is a huge responsibility. It often happens that mothers, especially when they are having their first baby, feel stressed and incompetent in their role as mothers even as their children normally grows. The purpose of this article is to identify the general features of psychological stress among mothers of autism spectrum disorder and Down syndrome and to identify the differences and relationship in psychological stress between mothers of autism and down syndrome. In this study participated a group of mothers with children who have autism (n = 44) and mothers of children with Down syndrome (n = 44). The findings made proved that the general features of psychological stress are high Among mothers of autistic children, while it was low among mothers of Down syndrome, there were also statistically significant differences in the level of psychological stress between mothers of autism and Down syndrome, and a correlation was found between mothers of autism and Down syndrome at the level of significance (0.01).

scholarly journals Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e036465 ◽  
Author(s):  
Sally-Ann Cooper ◽  
Linda Allan ◽  
Nicola Greenlaw ◽  
Paula McSkimming ◽  
Adam Jasilek ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Cohort Study ◽  
Intellectual Disabilities ◽  
Mortality Risk ◽  
Record Linkage ◽  
Causes Of Death ◽  
Percutaneous Endoscopic Gastrostomy Tube ◽  
Clinical Predictors ◽  
Endoscopic Gastrostomy ◽  
Adults With Intellectual Disabilities

ObjectivesTo investigate mortality in adults with intellectual disabilities: rates, causes, place, demographic and clinical predictors.DesignCohort study with record linkage to death data.SettingGeneral community.Participants961/1023 (94%) adults (16–83 years; mean=44.1 years; 54.6% male) with intellectual disabilities, clinically examined in 2001–2004; subsequently record-linked to their National Health Service number, allowing linkage to death certificate data, 2018.Outcome measuresStandardised mortality ratios (SMRs), underlying and all contributing causes of death, avoidable deaths, place, and demographic and clinical predictors of death.Results294/961 (30.6%) had died; 64/179 (35.8%) with Down syndrome, 230/783 (29.4%) without Down syndrome. SMR overall=2.24 (1.98, 2.49); Down syndrome adults=5.28 (3.98, 6.57), adults without Down syndrome=1.93 (1.68, 2.18); male=1.69 (1.42, 1.95), female=3.48 (2.90, 4.06). SMRs decreased as age increased. More severe intellectual disabilities increased SMR, but ability was not retained in the multivariable model. SMRs were higher for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. For adults without Down syndrome, aspiration/reflux/choking and respiratory infection were the the most common underlying causes of mortality; for Down syndrome adults ‘Down syndrome’, and dementia were most common. Amenable deaths (29.8%) were double that in the general population (14%); 60.3% died in hospital. Mortality risk related to percutaneous endoscopic gastrostomy/tube fed, Down syndrome, diabetes, lower respiratory tract infection at cohort-entry, smoking, epilepsy, hearing impairment, increasing number of prescribed drugs, increasing age. Bowel incontinence reduced mortality risk.ConclusionsAdults with intellectual disabilities with and without Down syndrome have different SMRs and causes of death which should be separately reported. Both die younger, from different causes than other people. Some mortality risks are similar to other people, with earlier mortality reflecting more multimorbidity; amenable deaths are also common. This should inform actions to reduce early mortality, for example, training to avoid aspiration/choking, pain identification to address problems before they are advanced, and reasonable adjustments to improve healthcare quality.

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