Norway and Autism
KeywordsAutism Spectrum Disorder Asperger Syndrome Autistic Disorder Picture Exchange Communication System Joint Engagement
The history of autism in Norway is not very well documented. However, we know that the first diagnosis using the term autism was applied during the 1950s, as a result of Leo Kanner’s seminal work in the early 1940s (Kanner 1943). During the 1950s and 1960s, most individuals diagnosed with autism were institutionalized in centralized institutions, so-called institutions for “the mentally retarded” together with other disabled and impaired individuals. The National Competence Program for Autism released a report in 1997, which dealt with the life span and quality of life for ten of the first diagnosed individuals in Norway (Solbakken 1997). At that time, the individuals were in their late 40s, and the parents which were interviewed were in their elderly days. The general commonalities reported for the cases comprised institutionalizing, few resources, lack of individual facilitation, abuse, and malpractice during the 1950s, 1960s, and parts of the 1970s. Normally, the parents of children who were diagnosed with autism in this period were resourceful and had contacts within the field of autism, whereas others were often diagnosed with oligophrenia. Treatment was often related to sedation by drugs and strapping, and there was a lack of structured behavioral and skill training. The institutionalization was more custody facility than anything else during this period of time.
After Norway had become an increasingly prospering oil nation in the late 1960s and during the 1970s, major changes happened in both the health sector and also in the educational system. There was a heavy debate in the 1970s and 1980s focusing on the wrongdoings of the larger institutions, and the human right to participate in the society was proclaimed. A law regulating special schools for disabled was incorporated into the general law of education in 1975, and the responsibility for education and training of children with autism was transferred from the state-funded institutions to each county council which resulted in a reduction of the larger institutions and a stronger focus on special schools for children with disabilities. Noteworthy, this implied that children and individuals with autism passed the same system as individuals with other disabilities during the time span from the 1950s to as late as the 1980s. In 1965, the Autism Association of Norway (Autismeforeningen) was established; however, it was not before 1982 that the same society established a professional autism advisory board with the intended goal of securing parents, caregivers, teachers, and special education teachers with professional advice on autism. Both parents and professionals were recommended to partnership through the autism association. Today, the association has approximately 4,500 members across Norway.
Together with a number of new educational laws and governmental regulations during the 1990s and early 2000s, the prevailing special schools were discontinued, and children within the autism spectrum and other disabilities were included into their local kindergarten and school. Though extra resources were made available through assessments, the educational school psychology services enable them to participate in special need education programs provided by specially trained teachers. Over the past two decades, the assessment and diagnostic procedures have been conducted by specialized child disability clinics (habilitation units or child and adolescent psychiatry), which can be found in each county in Norway. Norway has a public healthcare system, securing everyone the right to the same assessment and diagnostic procedures. Children with autism are mostly living at home with their parents, attending regular kindergartens and schools mainstreamed with typically developed children, with follow-up by the local special education advisors. Intervention methods used in Norway during the 1980s, 1990s, and 2000s have been primarily either a combination of visual communication training or TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) or ABA (applied behavior analysis) (Lovaas et al. 1981).
Legal Issues, Mandates for Service
Norway has a wide range of services for children with special need and which are governed by law. All children, including those with disabilities such as an autism spectrum disorder, have the right to an equal education that considers each individual’s needs. Those with special needs have the right to an individually tailored school day with special education (The Norwegian Education Law 1998). There are different financial aid schemes for individuals with ASD and their families. The Norwegian Work and Welfare Agency (NAV) provides individuals with different impairments of financial aid if their impairment necessitates extra care and supervision. This financial aid shall also ensure stimulation, education, and training at home. The same agency also offers an extra financial aid to those who have additional expenses related to the diagnosis, e.g., if a special diet creates additional costs to the family (The Norwegian Work and Welfare Agency 2014).
Each municipality is responsible for handling applications for subsidies for care from parents or caregivers of children with disabilities such as autism. Such a subsidy can be given as a form of salary that is often given to parents with an additional and heavy workload as parents of a child/children with disabilities (The Norwegian Department of Health and Care 2011). All caregivers of children with disabilities are also entitled to 20 days with full payment to stay at home with sick children.
Diagnosis and Prevalence
With the ICD-10 (1992), which is the diagnostic system used in Norway, the term autism spectrum disorders and the subgroup diagnoses was established in Norway as a way to standardize the diagnostics and assessment of individuals suspected for ASD. There are national guidelines for assessment and diagnostics of children with suspected ASD. The guidelines, however, are not detailed and are subject to different practice at each clinic. A regional study conducted in the southeastern part of Norway indicated that age at diagnosis is during preschool age at approximately 46.4 months and thus resembling similar countries’ diagnostic age (Larsen 2015). Another study using the Norwegian Patient Registry indicates that some of the subgroups within ASD often is not diagnosed until late childhood or early adolescence (Surèn et al. 2012).
Sponheim and Skjeldal (1998) reported prevalence estimates in Norway to be approximately 4–5 per 10,000 for childhood autism in a population of children from 3 to 14 years, a somewhat low prevalence compared to other studies at the time, though they focused on autistic disorder specifically and did not recruit children across the whole spectrum. A recent study indicated a fourfold increase with prevalence of 51 per 10,000 when considering the whole range of the spectrum (Isaksen et al. 2012). Other estimates from other studies with Norwegian samples (Posserud et al. 2010; Surèn et al. 2012) indicate that there has been a rise in prevalence of ASD akin to what is typically found in other international studies (e.g., UK and US).
Overview of Current Treatments and Centers
Norway has a public health system, providing all individuals the same rights to assessment and treatment. Each regional hospital and all the major university hospitals are state funded and provide assessment and some kind of intervention for children with suspected and diagnosed ASD. There are national guidelines for assessment and diagnostics of children with suspected ASD. The guidelines, however, are not detailed and are subject to different practice at each clinic. Current intervention programs provided by the hospital clinics are mainly ABA and derivates of ABA (such as Early Intensive Behavioral Interventions (EIBI)). Many use versions of Picture Exchange Communication System (PECS), a form of augmentative and alternative communication for children with ASD and limited language. There exist some regions in Norway where pivotal response therapy (PRT) is the most established intervention method; however, this is only the case in a fraction of Norway’s 19 counties. The municipalities are also responsible for intervention and training in the context of kindergartens and schools; the most used intervention focus is parts of the TEACCH method, whereas hospital clinics are to a higher degree recommend ABA and PRT also in kindergartens and schools. There are currently agencies in each healthcare region in Norway dealing with among other autism spectrum disorders. Currently, there still exist a few schools that act as resource centers for children with ASD: Nordvoll and Haug in the Oslo region and Frydenlund in Drammen as the most known. They teach a substantial number of pupils, both in the school, but also through supervising other schools working with children with ASD.
Overview of Research
The most significant research in Norway on ASD during the last 10 years is the MoBa study (mother-child study), a longitudinal pregnancy population cohort, following over 100,000 children as they grow older. Linked to this study is the Autism Birth Cohort study (Stoltenberg et al. 2010) with the purpose of identifying all children with ASD in MoBa. The key aims are to disentangle causes of ASD, both genetic and environmental and their interaction, linked to timing of exposure. The most known publication from this study is mother’s usage of folic acid around conception and the reduce risk of having a child with autistic disorder (Surén et al. 2013b). Other Norwegian studies have investigated a range of topics such as Asperger syndrome related to the theory of mind (Kaland et al. 2002, 2008), comorbidity (Gjevik et al. 2015; Bakken et al. 2010; Helverschou et al. 2011), language (Kalandadze et al. 2016; Nordahl-Hansen et al. 2014; Tetzchner and Martinsen 1981; Vulchanova et al. 2012) and ASD related to symptoms of depression (Andersen et al. 2015). Different researchers have also been involved in publications related to screening (Havdahl et al. 2016; Posserud et al. 2009; Stenberg et al. 2014; Øien et al. 2016) and other issues of measures and assessment of persons with ASD (e.g., Bishop et al. 2016; Øien and Eisemann 2016; Nordahl-Hansen et al. 2016). Some of the notable psych-educational treatment studies have mainly targeted preschool children and investigated effects of early intensive behavior interventions (Eikeseth et al. 2002), low-intensity behavioral treatment (Eldevik et al. 2006), and joint attention and joint engagement intervention (Kaale et al. 2014).
(Most studies and researchers on ASD in Norway is conducted or linked to non-private institutions including different universities, university hospitals, and university colleges.)
Social Policy and Current Controversies and Training
The largest organization is the Norwegian Autism Association, which is a parent and care provider organization with approximately 4,500 members with the aim of increasing the knowledge about ASDs among parents, teachers, other professionals, and the individuals with ASDs themselves. Besides this organization, there is a lack of social interest and focus on ASDs in Norway. The latest prevalence study in Norway showed that 0.9% of all children aged 12 were diagnosed with ASDs, and the number for children between 6 and 12 years old was 0.6% (Surén et al. 2013). There are few organized training programs for parents, teachers, and other professionals, with differences between the 19 counties. However, the regional competence units and hospital clinics offer various courses for parents, teachers, and others who are interested in learning more. Obviously, there is much room for improvement and especially for developing national guidelines for intervention for children and individuals with ASDs in Norway.
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