About the Autism Study
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The Autism Study uses data from the Norwegian Patient Register and the Norwegian Mother, Father and Child Study (MoBa) to study autism in children and adolescents. The study is run by the Norwegian Institute of Public Health in collaboration with the Nic Waals Institute at Lovisenberg Hospital in Oslo.
Aim of the study
The Autism Study has the following scientific goals:
- Examine how many children receive autism diagnoses in Norway, how this has changed over time, and how autism diagnosis is related to sociodemographic characteristics such as sex and gender, age, and family background (education, income, country of origin), and co-occurring diagnoses.
- Investigate the developmental course of children with autism from birth to adulthood, including language, communication, social behavior, interests, routines, sensory responses, cognition and learning, as well as emotional and behavioral functioning.
- Examine characteristics of the healthcare and community services children and young people with autism receive, including the timing, type and frequency of psychological, habilitation, medical, social and educational services.
- Explore key outcomes in adolescence and adulthood, including life satisfaction, mental health, housing, education and employment, friendships, and community participation.
- Investigate how genetic and environmental factors – and their interactions – influence neurodevelopment from prenatal life to adulthood.
Investigation of Increases in Autism Diagnoses
There has been a significant increase over time in the number of children and young people referred for assessment and follow-up for autism. The increase in autism diagnoses began several decades ago. International research suggests that a large part of the explanation for the increase lies in increased recognition, referral, and use of the diagnosis. But this does not rule out the possibility that there may also be a real increase in the incidence of children meeting the diagnostic criteria for autism. In recent years, the rate of increase in autism diagnoses in Norway appears to have accelerated somewhat (see the Public Health Report). We do not know the cause of these changes, but it is likely a complex explanation with several different factors working together. This is one part of what we will investigate in the Autism Study.
There is solid support in research for genetic factors explaining a large proportion (70-90%) of the variation in predisposition to autism in the population (Havdahl et al., 2021). Even though it may be easy to think that genetics do not change within one or two generations, the relationship between genetics and the environment is extremely complex. There are examples of societal changes that could possibly affect genetics in the next generation, such as parents having children at an older age, which could affect the genetics of their children (Lee & McGrath, 2015).
It is also possible that environmental and societal factors play a role in the development of autism, most likely in interaction with genetic predisposition. It has recently been established that rate of autism diagnoses, especially among pre-school aged children, is particularly high for children with immigrant backgrounds (Hansen et al., 2023). However, it is extremely difficult to find answers as to whether there are causal relationships between specific factors and the increase in autism diagnoses because the factors are almost impossible to separate from each other and from genetics. Examples of environmental and societal changes that have occurred in the same period as we have seen an increase in autism diagnoses include people having children at an older age, very premature infants surviving more often and growing up, changes in recognition, referral and diagnosis of autism, and the daycare and school context possibly requiring different social skills and flexibility in behavior and interests. These are among the many factors we will investigate further.
History of the Autism Study
The Autism Study began in 2003. Between 2005 and 2012, we used information from MoBa's questionnaire for 3-year-olds to identify children with signs of autism. The children were invited to participate in clinical assessments at the Nic Waals Institute, in order to confirm whether they had autism or not. Until 2018, we collaborated with Columbia University in New York, and the study was called the Autism Birth Cohort Study (ABC study).
Since 2009, we have linked MoBa with the Norwegian Patient Register to identify any MoBa participants who have been diagnosed with autism in the healthcare system. We check the medical records to examine whether the participants fit the diagnostic criteria for autism. In addition, we collect important clinical information.
Autism study data
The Autism Study currently uses the following data sets in research:
- Data from the Norwegian Patient Register
- Questionnaire data from MoBa.
- Data from the Medical Birth Registry for MoBa participants.
- Data from clinical trials of MoBa participants, conducted by the ABC study from 2005 to 2012, a total of 1032 participants.
- Data from the Norwegian Patient Register for MoBa participants who have received autism diagnoses in the specialist health service, a total of 1389 participants.
- Data from medical records for MoBa participants who have received autism diagnoses in the specialist health service. To date, journals have been reviewed for all who were registered in the years 2008-2018, a total of 1350 participants.
The results of the clinical examinations and medical records reviews are described in Norwegian in an article in the Journal of the Norwegian Medical Association in 2019.
Funding and approval
Data collection is now financed by the Norwegian Institute of Public Health. The research projects that use the data from the Autism Study are funded by grants from the Research Council of Norway and Helse Sør-Øst. The Autism Study has been approved by the Regional Ethics Committee with project number 18964.
