CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Intellectual Disability and coexisting Autism and ADHD in Down syndrome - a population-based study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
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 [en]
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: urn:nbn:se:uu:diva-381779ISBN: 978-91-513-0649-0 (print)OAI: oai:DiVA.org:uu-381779DiVA, id: diva2:1304705
Public defence
2019-06-07, Rosénsalen, Akademiska Barnsjukhuset, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2019-05-16 Created: 2019-04-12 Last updated: 2019-06-18
List of papers
1. Prevalence of autism and attention-deficit-hyperactivity disorder in Down syndrome: a population-based study
Open this publication in new window or tab >>Prevalence of autism and attention-deficit-hyperactivity disorder in Down syndrome: a population-based study
Show others...
2017 (English)In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 59, no 3, p. 276-283Article in journal (Refereed) Published
Abstract [en]

AIM To investigate the prevalence of autism spectrum disorder (ASD) and attention-deficit-hyperactivity disorder (ADHD) in a population-based group of children and adolescents with Down syndrome, and to relate the findings to level of intellectual disability and to medical conditions. METHOD From a population-based cohort of 60 children and adolescents with Down syndrome, 41 individuals (29 males, 12 females; mean age 11y, age range 5-17y) for whom parents gave consent for participation were clinically assessed with regard to ASD and ADHD. The main instruments used were the Autism Diagnostic Interview-Revised, Autism Diagnostic Observation Schedule, Swanson, Nolan, and Pelham-IV Rating Scale, and the Adaptive Behavior Assessment System-II. RESULTS High rates of ASD and ADHD were found: 17 (42%) and 14 (34%) of the 41 children met DSM criteria for ASD and ADHD respectively. INTERPRETATION Children with Down syndrome and coexisting neurodevelopmental/neuropsychiatric disorders in addition to intellectual disability and medical disorders constitute a severely disabled group. Based on the results, we suggest that screening is implemented for both ASD and ADHD, at the age of 3 to 5 years and early school years respectively, to make adequate interventions possible.

Place, publisher, year, edition, pages
WILEY, 2017
National Category
Neurology Pediatrics
Identifiers
urn:nbn:se:uu:diva-320266 (URN)10.1111/dmcn.13217 (DOI)000397320200012 ()27503703 (PubMedID)
Available from: 2017-04-18 Created: 2017-04-18 Last updated: 2019-04-12Bibliographically approved
2. More severe intellectual disability found in teenagers compared to younger children with Down syndrome.
Open this publication in new window or tab >>More severe intellectual disability found in teenagers compared to younger children with Down syndrome.
Show others...
2019 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 5, p. 961-966Article in journal (Refereed) Published
Abstract [en]

AIM: We investigated the severities and profiles of intellectual disability (ID) in a population-based group of children with Down syndrome and related the findings to coexisting autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD).

METHODS: There were about 100 children with Down syndrome living in Uppsala County, Sweden, at the time of the study who all received medical services from the same specialist outpatient clinic. The 60 children (68% male) were aged 5-17 years at inclusion: 41 were assessed within the study and 19 had test results from previous assessments, performed within three years before inclusion. We compared two age groups: 5-12 and 13-18 years old.

RESULTS: Of the 60 children, 49 were assessed with a cognitive test and the 11 children who could not participate in formal tests had clinical assessments. Mild ID was found in 9% of the older children and in 35% of the younger children. Severe ID was found in 91% of the older children and 65% of the younger children. Verbal and nonverbal domains did not differ.

CONCLUSION: Intellectual level was lower in the older children and patients with Down syndrome need to be followed during childhood with regard to their ID levels.

Keywords
Attention deficit hyperactivity disorder, Autism spectrum disorder, Cognitive profile, Down syndrome, Intellectual disability
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-380997 (URN)10.1111/apa.14624 (DOI)000465091200027 ()30372566 (PubMedID)
Available from: 2019-04-03 Created: 2019-04-03 Last updated: 2019-05-14Bibliographically approved
3. Autism needs to be considered in children with Down syndrome
Open this publication in new window or tab >>Autism needs to be considered in children with Down syndrome
Show others...
(English)In: article id SPAE-2019-0175Article in journal (Refereed) Submitted
Abstract [en]

Aim: To compare levels and profiles of autistic symptoms in children with Down syndrome (DS) with diagnosed autism spectrum disorder (ASD), with those with DS without ASD and with children with idiopathic autism.

Methods From a population-based cohort of 60 children with DS (age 5-17 years) with 41 participating, those with ASD were compared to those without ASD using the scores obtained with the Autism Diagnostic Observation Schedule (ADOS) Module-1 algorithm.

Results: Children with both DS and ASD had significantly higher ADOS scores in all domains compared to those without ASD. When the groups with DS, with and without ASD, were restricted to those with severe intellectual disability (ID), the difference remained. When the children with DS and ASD were compared with a group with idiopathic autism, the ADOS profile was broadly similar.

Conclusion: A considerable proportion of children with DS, exhibit autism in addition to severe ID. In addition, there is also a group of children with DS and severe ID, but without autism. There is a need to increase awareness of the high prevalence of autism in children with DS. Recognizing the prevalence of autism is important for the appropriate diagnosis and care of children with DS.

National Category
Medical and Health Sciences
Research subject
Pediatrics
Identifiers
urn:nbn:se:uu:diva-381066 (URN)
Available from: 2019-04-04 Created: 2019-04-04 Last updated: 2019-04-12
4. An intervention targeting social, communication and daily activity skills in children and adolescents with Down syndrome and autism: a pilot study
Open this publication in new window or tab >>An intervention targeting social, communication and daily activity skills in children and adolescents with Down syndrome and autism: a pilot study
Show others...
(English)Article in journal (Refereed) Submitted
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.

National Category
Medical and Health Sciences
Research subject
Pediatrics
Identifiers
urn:nbn:se:uu:diva-381069 (URN)
Available from: 2019-04-04 Created: 2019-04-04 Last updated: 2019-04-12

Open Access in DiVA

fulltext(1295 kB)101 downloads
File information
File name FULLTEXT01.pdfFile size 1295 kBChecksum SHA-512
85b7b8049d4dad96fdf59e162838e39dab16fbd5d3e8917c33670da749e89bb4e1f6f3471f995fdcc34f766b198a8d698da7e3661f97c08fc68a81ad47a2ecab
Type fulltextMimetype application/pdf
Errata(55 kB)40 downloads
File information
File name FULLTEXT02.pdfFile size 55 kBChecksum SHA-512
1b42c9d8e6c869a29c776fe26cb086d736862248cdd8b7be1e2f1902e60cafe6384a4b09efa31c4be90f64fb95ade657ea1f5e54158c0c0d14a86a012ba85f82
Type fulltextMimetype application/pdf
Buy this publication >>

Search in DiVA

By author/editor
Wester Oxelgren, Ulrika
By organisation
Department of Women's and Children's Health
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 141 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 332 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf