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Language and communication disorders in the early years - their relationship to autism and ESSENCE

Participants: Carmela Miniscalco, Björn Kadesjö & Christopher Gillberg.

Background: Late developing language may be a risk marker for neuropsychiatric disorders such as autism spectrum disorder (ASD) in early school age. Approximately 6000 children each year are targeted with a language and autism screening at age 2.5-3 years in Gothenburg since 2009. Approximately 5-6% are identified by the screening, of these around 4-5% (~240-300) are expected to have language impairment (LI) and 1% (~ 60 children) are expected to have ASD according to what is known from previous studies about the prevalence of the two conditions. In many cases there will be overlap (including overlap with other symptoms and disorders in the ESSENCE group).

Method: Children who below 3 years of age were suspected of having ASD according to language and communication screening were followed prospectively during the preschool years, at identification (T1), two years after diagnosis(T2) and at early school-age (T3). The overall aims of the project were to describe language and communication development and function in these children and to evaluate and develop assessment methods and protocols suitable for quantification of language and communicative function in these groups.

Results: A total of 129 children with suspected ASD were included in 2009-11 and have been followed-up. The vast majority (n=100) of these have received an ASD diagnosis after multidisciplinary conjoint assessment.

96 of these children participated in a new multi-disciplinary investigation two years later. It showed that (93%) of all children with ASD at T1 still had an ASD diagnosis at T2. Forty per cent of the children who screened positive for ASD, but who received no ASD diagnosis after the first investigation, met criteria for ASD diagnosis at the 2-year follow-up. The children who had symptoms and disorders within ESSENCE without ASD at T1 still had remaining ESSENCE difficulties at T2, for example, with language, attention, behaviour.

At T2, 97 children (both those with ASD and those with ESSENCE) participated in the speech and language assessment. They had a language comprehension significantly below the level of typically developing children, and they also showed phonological /speech sound difficulties. The group of children who received only autism diagnosis had lower results on non-verbal ability and on language and phonological skills. Almost 40% of children with autism diagnosis also met criteria for language disorders. A similar proportion had general difficulties, i.e. both low linguistic and low non- verbal skills, and almost 20 % of the children had autism without any linguistic or non-linguistic difficulties. The children with both autism and language disorders also had significant difficulties with phonology /speech sound that differentiated them from the children with autism without linguistic and non-linguistic difficulties.

After the T2 assessment, parents of 11 children who were diagnosed with ASD two years prior were interviewed. A qualitative design, a phenomenological hermeneutic method, was used. The parents were interviewed about their experiences of the neuropsychiatric diagnostic process, i.e. the time before the screening, the time during the neuropsychiatric multidisciplinary evaluation and the time after diagnosis. The essence that emerged from the data was “negotiating knowledge”, and the three themes capturing the parents’ experiences of going through the process of having their child diagnosed with ASD were (1) seeking knowledge, (2) trusting and challenging experts, and (3) empowered but alone. The parents expected intervention to start directly after diagnosis but felt they had to fight to obtain the resources their child needed. After the process, they described that they felt empowered but still alone, i.e. although they received useful and important information about their child, they were left to manage the situation by themselves. As for clinical implications, the study points to the necessity of developing routines to support the parents during and after the diagnostic process. Recommended measures include developing a checklist outlining relevant contacts and agencies; establishing a coordinator responsible for each child; dividing the summary meeting at the clinic into two parts; making more than one visit to the preschool; and providing a parental training programme at the clinic.

A third follow-up (T3) has recently been completed. 83 of the 97 children who participated in the T2 language assessment have been examined at 7-8 years of age. The focus of this follow-up is the children's language, communication and literacy skills. Currently analysis of test results and other data are being processed.

Articles:

2016
Carlsson, E., Miniscalco, C., Kadesjö, B., & Laakso, K. (2016). Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders. [e-pub ahead of print]

Kantzer, A-K., Hagberg, B., Spjut Jansson, B., Fernell, E., Gillberg, C., & Miniscalco, C. (2016). Young children who screen positive for autism: stability, change and "comorbidity" over two years. Research in Developmental Disabilities (revised manuscript submitted)

Miniscalco, C., Åsberg Johnels, J., Reinholdson, A-C., Gillberg, C. & Frazier Norbury, C. (2016). Parsing the heterogeneity in language ability in young children with autism. (manuscript in preparation)
Reinholdson, A-C. Speech Sound Disorder in children screened positive for Autism Spectrum Disorder:Associations with language level. (Master thesis in Speech and language Pathology, Gothenburg university, 2016)

2014
Miniscalco, C., Rudling, M., Råstam, M., Gillberg, C. & Johnels, J.A. (2014). Imitation (rather than core language) predicts pragmatic development in young children with ASD: a preliminary longitudinal study using CDI parental reports. International journal of language & communication disorders, 49, 369-375.

Johnels, J.A., & Miniscalco, C. (2014). Excellent word-reading ability in the context of an autism spectrum disorder: A case study of a Swedish-speaking 7-year-old boy. Journal of Cognitive Education & Psychology, 13, 88.

Johnels, J.A., Gillberg, C., Falck-Ytter, T., & Miniscalco, C. (2014). Face viewing patterns in young children with autism spectrum disorders: Speaking up for a role of language comprehension. Journal of Speech, Language, and Hearing Research, (Epub ahead of print).

Cederlund, M., Miniscalco, C., & Gillberg, C. (2014). Pre-schoolchildren with autism spectrum disorders are rarely macrocephalic: a population study: a population study. Research in Developmental Disabilities, 35, 992-998.

2013
Kantzer, A.K., Fernell, E., Gillberg, C., & Miniscalco, C. (2013). Autism in community pre-schoolers: developmental profiles. Research in Developmental Disabilities, 34, 2900-2908.

2012
Miniscalco, C., Fränberg, J., Schachinger-Lorentzon, U., & Gillberg, C. (2012). Meaning what you say? Comprehension and word production skills in young children with autism. Research in Autism Spectrum Disorders, 6, 204-211.



Page Manager: Anna Spyrou|Last update: 4/4/2016
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