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An intervention targeting social, communication and daily activity skills in children and adolescents with Down syndrome and autism: a pilot study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.ORCID iD: 0000-0002-9508-1864
Institutionen för psykologi, Stockholms universitet.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Paediatric Inflammation, Metabolism and Child Health Research.ORCID iD: 0000-0002-1745-9550
Uppsala University, Science for Life Laboratory, SciLifeLab. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Medicinsk genetik och genomik.
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2019 (English)In: Neuropsychiatric Disease and Treatment, ISSN 1176-6328, E-ISSN 1178-2021, Vol. 15, p. 2049-2056Article in journal (Refereed) Published
Abstract [en]

Purpose: To evaluate whether an intervention, targeting deficits in social communication, interaction and restricted activities in children and adolescents with Down syndrome and autism could lead to enhanced participation in family and school activities.

Methods: The intervention included education for parents and school staff about autism, and workshops to identify social-communication and daily living activities that would be meaningful for the child to practice at home and at school. Thereafter, a three-month period of training for the child followed. Outcome measures comprised evaluation of goal achievement for each child, the “Family Strain Index” questionnaire and a visual scale pertaining to the parents´ general opinion about the intervention.

Results: On average, more than 90% of the goals were (to some extent or completely) achieved at home and at school. The mean scores of the “Family Strain Index” were almost identical at the follow-up to those before intervention. The evaluation supported that the use of strategies, intended to facilitate activities and communication, remained largely 18 months after start of the intervention.

Conclusion: Despite the group involved in this study being comprised of older children and adolescents, most of whom had severe and profound intellectual disability, the goal achievements and parents’ views on the intervention were encouraging.

Place, publisher, year, edition, pages
2019. Vol. 15, p. 2049-2056
National Category
Pediatrics
Research subject
Pediatrics
Identifiers
URN: urn:nbn:se:uu:diva-381069DOI: 10.2147/NDT.S205721ISI: 000476857800001PubMedID: 31410008OAI: oai:DiVA.org:uu-381069DiVA, id: diva2:1302232
Available from: 2019-04-04 Created: 2019-04-04 Last updated: 2019-08-30Bibliographically approved
In thesis
1. Intellectual Disability and coexisting Autism and ADHD in Down syndrome - a population-based study
Open this publication in new window or tab >>Intellectual Disability and coexisting Autism and ADHD in Down syndrome - a population-based study
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The thesis investigated associated neurodevelopmental/neuropsychiatric aspects in a population-based cohort of 60 children and adolescents (5–17 years) with Down syndrome (DS).

Forty-one subjects were comprehensively assessed by a clinical research team; 17 (41%) and 14 (34%) met DSM criteria for autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD), respectively.

Forty-nine subjects had a formal cognitive test and 11 had clinical assessments due to profound intellectual disability (ID). Mild ID (IQ 50–70) was found in 9% of the teenagers (13–18 years) and in 35% of the younger (5–12 years) children. Corresponding figures for severe ID (IQ <50) were 91% and 65%, respectively. The ID was more severe in individuals with coexisting ASD.

Levels and profiles of autistic symptoms, according to ADOS Module-1, were analysed. Children with DS and ASD, with different levels of ID, had significantly more symptoms within all autism domains, than those with DS only – a difference which remained when subgroups with severe ID were compared. A considerable proportion of subjects with DS had ASD in addition to ID, but there was a group with DS and severe ID without ASD. The autism profiles of children with DS and ASD were similar to those of children with idiopathic autism. The commonly used investigation tools used to diagnose ASD in the study, seemed to be appropriate in this patient group.

An intervention programme, including education for parents and school staff, adapted to the specific needs of schoolchildren with DS and ASD was performed and evaluated. Although the studied group comprised older children and adolescents, most of whom with severe or profound ID, they could achieve goals and skills previously not managed. In addition, the parents’ views on the intervention were encouraging.

In conclusion, there is a need of awareness of the increased prevalence of ASD and ADHD in children with DS. We suggest that screening for ASD and ADHD should be implemented for children with DS at the age of 3–5 years and at early school years, respectively. We also suggest that children with DS should be re-evaluated regarding level of ID before entering secondary school.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2019. p. 61
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1570
Keywords
Down syndrome, intellectual disability, autism spectrum disorder, attention-deficit/hyperactivity disorder, autism phenotype, autism intervention.
National Category
Medical and Health Sciences
Research subject
Pediatrics
Identifiers
urn:nbn:se:uu:diva-381779 (URN)978-91-513-0649-0 (ISBN)
Public defence
2019-06-07, Rosénsalen, Akademiska Barnsjukhuset, Uppsala, 13:15 (Swedish)
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Supervisors
Available from: 2019-05-16 Created: 2019-04-12 Last updated: 2019-06-18

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Wester Oxelgren, UlrikaMyrelid, ÅsaAnnerén, GöranGustafsson, Jan

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