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

Abstract

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.

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

“…Gibson & Douglas, 2018 ; Kirkham, 2017 ), this investigation was the beginning of the now widespread field of applied behavior analysis (ABA), which remains one of the most widely used interventions for skill acquisition and reduction of harmful behavior for Autistic individuals today (Becerra et al, 2017 ; Xu et al, 2019 ). While this traditional form of ABA therapy (commonly referred to as Discrete Trial Training [DTT; Smith, 2001 ]) has been shown to have some beneficial effects on outcomes such as language, social functioning, adaptive behavior, cognitive ability, and challenging behaviors (Sandbank et al, 2020 ), there is a paucity of experimental evidence regarding long-term effects on adult outcomes (Jónsdóttir et al, 2018 ). Moreover, the literature has identified issues with some aspects of DTT’s implementation and outcomes, including slow progress, some practitioners’ continued use of aversives, and the potential lack of generalization and flexible application of skills in naturalistic contexts (Kirkham, 2017 ; Koegel et al, 1998 ; Sandoval-Norton & Shkedy, 2019 ; Schreibman, 2005 ).…”

Young Children with Autism Spectrum Disorder in Early Education and Care

“…However, it is also important to note that early intervention may need to be paired with ongoing supports and intervention in order to ensure that gains persist into adulthood. For example, in one longitudinal study that included three phases of assessment, researchers found "significant gains" (i.e., IQ gains and decreased symptomology) at age 6 compared to a group with dissimilar interventions; however, these positive contrasting gains disappeared in early adulthood (Jónsdóttir, Brynjarsdóttir, Saemundsen, & Sigurdsson, 2018). It is also essential to realize that some parents disagree with the emphasis placed on one model of intervention and its focus in the early years and that some adults with ASD are also speaking out about negative childhood experiences related to (E)IBI (Dawson, 2004;Langan, 2011).…”

A Meta-analysis of Outcome Studies of Autistic Adults: Quantifying Effect Size, Quality, and Meta-regression

“…Gillberg and Steffenburg (1987) reported that an IQ of more than 50 distinguished those with fair or better outcomes from those with poor or very poor outcomes; Howlin et al (2004) found that those with a poor or very poor outcome had a performance IQ (PIQ) below 70 and verbal IQ (VIQ) below 50. Having a higher IQ in adulthood is also associated with better outcome (Cederlund et al 2008;Eaves and Ho 2008;Howlin et al 2013;Jónsdóttir et al 2018). Eaves and Ho (2008), Howlin et al, (2013) and Farley et al (2009) report significant correlations (ranging from 0.40 to 0.65) between measures of IQ and outcome.…”

“…Howlin et al (2013) found that retrospective information on early autism severity was a stronger predictor of outcome than either childhood language ability or childhood IQ. Helles et al (2017) and Jónsdóttir et al (2018) reported that autism severity (measured at mean age 29.9 and 6.0 years respectively) negatively correlated with outcome. Chamak and Bonniau (2016) also reported that "high functioning" autism/Asperger's was exclusively associated with good outcome, and those who had "moderate autism" or "severe autism" were more likely to have poor or very poor outcome.…”