Where are they now? Long-term outcome of children with autism who received early intervention during their preschool years : a pilot study of 15 young adults

Objectives: The prevalence of autism in adults is constantly increasing, but little is known about their transition from childhood into adulthood. This encourages studies on how children diagnosed with autism at an early age fare later in life. The aim of this study was to examine long-term outcome of children with autism who received different forms of early intervention. Methods: Participants were 15 individuals who participated in the Iceland Young Autism Project (IYAP), affiliated to the UCLA Multi-site Young Autism Project, during the period from 1995 to 2000. Five of the participants received behavioural intervention, but the remaining 10 formed a control group and received intervention as usual. Participants were followed from their first autism diagnosis before 42 months of age (time 1) to the age of 6 years (time 2). The participants are now in their twenties (time 3). Information was gathered from parents on autism symptoms, co-occurring disorders, adaptive behaviour, functioning and participation, service use and quality of life. Results: About half of the participants have received diagnosis of a co-occurring condition and more than half take psychotropic medication. Their adaptive behaviour and quality of life is poorer than that of the general population. Hardly any differences were found between the original experimental and comparison groups. Conclusions: This study is the first to examine outcome and status of young adults with autism in Iceland. The results showed great individual variation in most variables that were measured, which suggests that although all of the participants received the same diagnosis at an early age, the outcome for them in adulthood is diverse. The difference between those who received behavioural intervention and those who did not seems to have neutralised over the years. Keywords: long-term outcome, early behavioural intervention, young adults with autism, quality of life, adaptive behaviour, co-occurring disorder

Athugun á mælitækinu Childhood autism rating scale 2 (CARS2). Forprófun á próffræðilegum eiginleikum

Skimunarlistar eru mjög hentug leið til að flýta fyrir að börn sem þurfi á því að halda fái viðeigandi greiningu og nauðsynleg inngrip. Skimun og meðferðarúrræði verða að haldast í hendur, því endanlegur tilgangur skimunar er að koma börnum snemma í meðferð og þjálfun. Skimunartæki bera ekki alltaf kennsl á þau börn sem sýna væg einkenni, sem veldur því að vandamál þessara barna eru oft ógreind lengi. CARS2 er ný útgáfa á mælitækinu CARS sem hefur verið mikið notað hérlendis. CARS2-HF er ætlað að ná til hærra standandi einstaklinga á einhverfurófinu. CARS2 hefur reynst bæði áreiðanlegt og réttmætt í því að bera kennsl á vægara, óljósari einkenni einstaklinga á einhverfurófinu. Mælitækið hefur nú verið þýtt yfir á íslensku í von um innleiðingu þess á Barna- og unglingageðdeild Landspítalans. Markmiðið rannsóknarinnar var að skoða próffræðilega eiginleika CARS2, kanna samræmi matsmanna, og bera CARS2 saman við önnur skimunartæki

Long-term outcome of children with autism who received different forms of early intervention during their preschool years: a pilot study of 15 young adults

Background: Studies on early intervention have reported significant gains for many children with autism. Knowledge on how these children fare in adulthood is limited. Objective: To examine long-term outcome of children with autism who received different forms of early intervention. Method: Participants were 15 young people who had all been diagnosed with ICD-10 childhood autism during the preschool years. Five received intervention based on the UCLA model for early intensive behavioral intervention, and 10 received eclectic treatment. Participants were followed from their first autism diagnosis during the preschool years (time 1) to the age of six years (time 2). The participants are now in their twenties (time 3), and at this point in time, information on autism symptoms, co-occurring disorders, quality of life, functioning, participation, adaptive behavior, and overall outcome was gathered from parents. Six of the participants answered questionnaires on quality of life, functioning, and participation. Results: The groups were comparable on all measures at time 1. Reassessment at time 2 showed that the early intensive behavioral intervention group had made significant gains in IQ, and that autism symptoms had decreased significantly, whereas such changes were not found for the eclectic treatment group. At time 3, most participants had considerable autism symptoms. Approximately half of them had received diagnosis of a co-occurring condition. Their quality of life and adaptive behavior was less favorable than that of the general population, but only a third had “poor” overall outcome. However, at time 3, hardly any differences were found between the groups. Conclusions: To maintain gains made during the preschool years, appropriate intervention and services may need to be extended into adulthood. These services should take into account the perceived needs of the individual, as expressed by himself/herself and his/her family.The work of S.L.J. on data collection at time 1 and time 2 was partly supported by the Icelandic Centre for Research 960810098.Peer Reviewe