Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort

Abstract

There is limited data on long-term outcome of ASD with co-occurring intellectual disabilities (ID) and challenging behaviours in France. The EpiTED period cohort is a 15 years longitudinal study of the developmental trajectories of 281 children initially recruited at mean age of 5 years. Two contrasted developmental trajectories were identified. Low cognitive level, absence of language, and higher ASD scores at baseline were predictive of low growth at follow-up. As adults the participants were predisposed to persistent co-occurring challenging behaviours as well as underlying ID impacting their ability to function independently. The results underscore the need for development of services and supports for adults with ASD in France who may also have already lacked access to adequate interventions and support services.

A developmental and sequenced one-to-one educational intervention (DS1-EI) for autism spectrum disorder and intellectual disability: A three-year randomized, single-blind controlled trial

“…Lack of generalization is a frequent issue in efficacy studies in ASD [38] . We hypothesize that the lack of significance in the group*time interaction may be due to (1) small effect sizes and insufficient sampling; (2) the high variance in subjects and evolution over time, which is a constant observation in ASD [ 39 , 40 ]; (3) the excessively short duration of the protocol; and (4) possible contamination between DS1-EI and TAU over a long treatment. As discussed by Yazdani and coll.…”

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism

“…Participants will complete the self-administered parent/caregiver domain level version of the VABS-3 approximately every 6 months over the study period. A battery of theoretically driven correlates of adaptive functioning trajectories were selected following a review of the literature,20 34–36 consultations between the research and clinical teams, input from a family advisory group and findings from our team’s Pathways in ASD study,21 37–40 including: core autism symptoms and their functional impacts (Autism Impact Measure (AIM)),41 42 social communication capacity (Autism Classification System of Functioning: Social Communication (ACSF:SC)),43 44 daily activity participation (Young Children’s Participation and Environment Measure (YC-PEM) or Participation and Environment Measure—Children and Youth (PEM-CY)),45 46 behavioural and sensory needs (Behavioral Inflexibility Scale (BIS),47 Sensory Experiences Questionnaire-short form (SEQ)),48 socioeconomic status (Sociodemographic Questionnaire), service characteristics (Autism Services Questionnaire), diagnosis path (Canadian Health Survey on Children and Youth49 questions pertaining to pathways to diagnosis) and family experience (Autism Family Experience Questionnaire (AFEQ)) 50. Since this is a pragmatic study, consideration was given to ensure the completion time of questionnaires was kept brief, to minimise participant burden.…”

Does the Arc of Science Bend Towards Impact? Four Decades of Empirical Research Published in JADD Since the DSM-III

“…All other original empirical research studies were categorized as basic research. This included studies focused on the possible cause, characteristics (Aaron et al, 2019 ), correlates (Abbeduto et al, 2019 ), or course (Baghdadli et al, 2019 ) of ASD. Some studies that might have yielded findings interpreted as having important implications for assessment or intervention but that fell short of actually testing a specific procedure on a clinical population were also categorized under basic research.…”