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      Exploration of caregiver experience for children with ASD: an in-depth perspective

      research-article
      Neha Gupta , Manya Khanna , Rashi Garg , Vedantika Sethi , Shivangi Khattar , Purva Tekkar , Shwetha Maria , Muskan Gupta , Akash Saxena , Parul Gupta , Sara Ann Schuchert
      Advances in Autism
      Emerald Publishing
      Caregiver, Diagnosis, Autism spectrum disorder, Early intervention, Caregiver burden

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          Abstract

          Purpose

          This study aims to examine the psycho-emotional and social experiences of caregivers of children with autism spectrum disorder. Various facets of the caregiving experience are explored, including the feelings and thoughts of the parents/caregivers, such as the resilience experienced in their journey, how they coped with the challenges and also their positive experiences.

          Design/methodology/approach

          In this study, these aspects of the caregiving experience are broadly probed using semi-structured interviews subjected to narrative analysis. Lastly, there is a focus on the role of therapist-led intervention, specifically, the Eye to I © intervention model and its contributions to the parent/caregiver experience.

          Findings

          Findings from this study indicate that parents benefit from interventions that bridge gaps in skills and interpersonal communication which parents/caregivers feel they encounter in their day-to-day activities. Additionally, support groups for parents and caregivers could further address these issues.

          Originality/value

          This exploration reveals insights about the roles of societal structures and the caregiving journey.

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          Most cited references62

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          • Abstract: found
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          Is Open Access

          Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

          Problem/Condition Autism spectrum disorder (ASD). Period Covered 2016. Description of System The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Results For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months). Interpretation The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. Public Health Action These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.
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            Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics.

            Elevated parenting stress is observed among mothers of older children with autism spectrum disorders (ASD), but little is known about parents of young newly-diagnosed children. Associations between child behavior and parenting stress were examined in mothers and fathers of 54 toddlers with ASD (mean age = 26.9 months). Parents reported elevated parenting stress. Deficits/delays in children's social relatedness were associated with overall parenting stress, parent-child relationship problems, and distress for mothers and fathers. Regulatory problems were associated with maternal stress, whereas externalizing behaviors were associated with paternal stress. Cognitive functioning, communication deficits, and atypical behaviors were not uniquely associated with parenting stress. Clinical assessment of parental stress, acknowledging differences in parenting experiences for mothers and fathers of young children with ASD, is needed.
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              • Article: not found

              Autism from 2 to 9 years of age.

              Autism represents an unusual pattern of development beginning in the infant and toddler years. To examine the stability of autism spectrum diagnoses made at ages 2 through 9 years and identify features that predicted later diagnosis. Prospective study of diagnostic classifications from standardized instruments including a parent interview (Autism Diagnostic Interview-Revised [ADI-R]), an observational scale (Pre-Linguistic Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule [ADOS]), and independent clinical diagnoses made at ages 2 and 9 years compared with a clinical research team's criterion standard diagnoses. Three inception cohorts: consecutive referrals for autism assessment to (1) state-funded community autism centers, (2) a private university autism clinic, and (3) case controls with developmental delay from community clinics. At 2 years of age, 192 autism referrals and 22 developmentally delayed case controls; 172 children seen at 9 years of age. Consensus best-estimate diagnoses at 9 years of age. Percentage agreement between best-estimate diagnoses at 2 and 9 years of age was 67, with a weighted kappa of 0.72. Diagnostic change was primarily accounted for by movement from pervasive developmental disorder not otherwise specified to autism. Each measure at age 2 years was strongly prognostic for autism at age 9 years, with odds ratios of 6.6 for parent interview, 6.8 for observation, and 12.8 for clinical judgment. Once verbal IQ (P = .001) was taken into account at age 2 years, the ADI-R repetitive domain (P = .02) and the ADOS social (P = .05) and repetitive domains (P = .005) significantly predicted autism at age 9 years. Diagnostic stability at age 9 years was very high for autism at age 2 years and less strong for pervasive developmental disorder not otherwise specified. Judgment of experienced clinicians, trained on standard instruments, consistently added to information available from parent interview and standardized observation.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                2056-3868
                22 May 2023
                16 June 2023
                : 9
                : 3
                : 217-240
                Affiliations
                [1] You're Wonderful Project , Delhi, India
                [2] Potentials Therapy Center , Delhi, India
                [3] You're Wonderful Project , Delhi, India
                [4] Potentials Therapy Center , Delhi, India
                Author notes
                Neha Gupta can be contacted at: gneha9908@gmail.com
                Article
                702934 AIA-09-2022-0044.pdf AIA-09-2022-0044
                10.1108/AIA-09-2022-0044
                dc0151af-d08c-45d1-b6ec-22062b50789f
                © Emerald Publishing Limited
                History
                : 01 September 2022
                : 05 January 2023
                : 08 March 2023
                : 30 March 2023
                Page count
                Figures: 8, Tables: 1, Equations: 0, References: 65, Pages: 24, Words: 8584
                Categories
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata
                M
                Web-ready article package
                Yes
                Yes
                JOURNAL
                included

                Health & Social care
                Caregiver,Diagnosis,Autism spectrum disorder,Early intervention,Caregiver burden

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