Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact
Abstract
BACKGROUND: This study examined whether behaviour problems and adaptive behaviour of low functioning young adults, and well-being of their families, varied by diagnostic syndrome [intellectual disability (ID) only, cerebral palsy, Down syndrome, autism], as well as by cultural group. METHODS: Behaviour disorders in young adults with moderate to severe ID were assessed from information provided by 282 caregivers during in-home interviews. The sample consisted of 150 Anglo participants, and 132 Latino, primarily Spanish-speaking, participants drawn from Southern California. RESULTS: Behaviour disorders and maternal well-being showed the same pattern across disability syndromes. Autism was associated with the highest scores in multiple behaviour problem areas as well as maternal reports of lower well-being. Down syndrome was associated with the lowest behaviour problem scores and the highest maternal well-being. When behaviour problems were controlled for, diagnostic groups accounted for no additional variance in maternal stress or depression. The pattern of behaviour problems and well-being did not differ by sample (Anglo vs. Latino), although level on well-being measures did. Latina mothers reported significantly higher depression symptoms and lower morale, but also higher positive impact from their child than did Anglo mothers. CONCLUSIONS: Caregivers of young adults with autism report more maladaptive behaviour problems and lower personal well-being, or stress, relative to other diagnostic groups, regardless of cultural group. However, cultural differences exist in caregiver reports of depression, morale, and positive perceptions. Implications for service provision aimed at families of children with challenging behaviour problems are discussed in the context of culture.
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Numerous studies have reported positive associations between the extent of challenging behaviour and caregiver variables such as parental stress, depressive symptoms, and anxiety in families of children with autism spectrum disorder and/or intellectual and developmental disabilities.
“Numerous studies have reported positive associations between the extent of CB and caregiver variables such as parental stress, depressive symptoms, and anxiety in families of children with ASD and/or IDD (17–21).”
Parents, especially mothers, of children with ASD often report elevated psychological distress profiles compared to parents of typically developing children and compared to parents of children with other disabilities.
“Parents, especially mothers, of children with an Autism Spectrum Disorder (ASD) often report elevated psychological distress profiles compared to parents of typically developing children (Eisenhower, Baker & Blacher, 2005; Schieve, Blumberg, Rice, Visser, & Boyle, 2007; Totsika, Hastings, Emerson, Berridge & Lancaster 2011), and compared to parents of children with other disabilities,”
From Child behavior problems and parental well-being in families of children with autism: The mediating role of mindfulness and acceptance (2014) · cites this paper as Blacher & McIntyre, 2006
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- Authors
- Blacher, J., & McIntyre, L. L.
- Affiliations
- University of California, Riverside (US)
- Syracuse University (US)
- Corresponding author
- Blacher, J.
- ORCID
- McIntyre, L. L.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2005-12-22
- Volume
- 50
- Issue
- 3
- Pages
- 184-198
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W2036592716
- Cited by
- 467
- References
- 57
- Citations by year
- 2026: 6 · 2025: 13 · 2024: 13 · 2023: 18 · 2022: 23 · 2021: 18 · 2020: 34 · 2019: 18 · 2018: 26 · 2017: 28 · 2016: 25 · 2015: 31 · 2014: 37 · 2013: 36 · 2012: 34
- FWCI
- 14.64
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- University of California, Riverside
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (HD 21324, R01HD021324)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Social Sciences › Psychology › Developmental and Educational Psychology › Behavioral and Psychological Studies
- Keywords
- intellectual disability, young adults, behavioral problems, adaptive behavior, family well-being, maternal depression, maternal stress, Hispanic mothers, autism spectrum disorder, Down syndrome, cerebral palsy, cultural differences, caregiver impact
- MeSH terms
- Activities of Daily Living, Adolescent, Adult, Autistic Disorder, Mental Disorders, Cerebral Palsy, Cross-Cultural Comparison, Down Syndrome, Female, Hispanic or Latino, Humans, Male, Intellectual Disability, Middle Aged, Mothers, Quality of Life, Comorbidity, Caregivers, Cost of Illness, White People
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