Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder

Autism ◽  
2021 ◽  
pp. 136236132110016
Author(s):  
Emily J Hickey ◽  
Michelle Stransky ◽  
Jocelyn Kuhn ◽  
Jessica E Rosenberg ◽  
Howard J Cabral ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Parenting Stress ◽  
Autism Spectrum ◽  
Diagnostic Process ◽  
Stress Coping ◽  
Family Impact ◽  
Hispanic Parents ◽  
Hispanic Families ◽  
Parent Experiences ◽  
Over Time

Significant disparities exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk of autism spectrum disorder; yet, little is known about parent experiences throughout the diagnostic process that may contribute to or help explain these disparities. The current study examined longitudinal trajectories of parenting stress, coping, and perceived family impact during the autism spectrum disorder diagnostic process among an ethnically and racially diverse low-income, urban sample, allowing for comparisons between Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress (χ2 = 5.35(1), p = 0.021), avoidant (χ2 = 9.66(1), p = 0.002) and approach (χ2 = 8.61(1), p = 0.003) coping, and negative family impact (χ2 = 5.39(1), p = 0.020) across time (main effects) compared with non-Hispanic families. Furthermore, there were differences in the change in use (Time Period × Ethnicity interaction effects) of both avoidant (χ2 = 10.80(3), p = 0.013) and approach (χ2 = 11.57(3), p = 0.009) coping, as well as negative family impact (χ2 = 9.81(3), p = 0.020), between Hispanic and non-Hispanic parents over time. These differences begin to shed light on the unique experiences of Hispanic parents. Because of the strengths that Hispanic families demonstrate, interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience in non-Hispanic families. Lay abstract Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience.

scholarly journals Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

2021 ◽  
Author(s):  
Amber Makino ◽  
Laura Hartman ◽  
Gillian King ◽  
Pui Ying Wong ◽  
Melanie Penner
Keyword(s):  
Autism Spectrum Disorder ◽  
Qualitative Methodology ◽  
Data Extraction ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Assessment Process ◽  
Diagnostic Process ◽  
Autism Spectrum Disorder Diagnosis ◽  
Parent Experiences ◽  
Research Findings

AbstractThe purpose of this review was to identify the quantity, breadth, and methodological characteristics of literature examining parent perspectives of autism spectrum disorder diagnosis, synthesize key research findings, and highlight gaps in the current literature. A systematic search was conducted for the period January 1994–February 2020. One hundred and twenty-two articles underwent data extraction. The majority of studies took place in Europe and North America in high-income countries. Over half of the studies used qualitative methodology. Four key components of the diagnostic experience were identified: journey to assessment, assessment process, delivery of the diagnosis and feedback session, and provision of information, resources, and support. Themes of parental emotions and parental satisfaction with the diagnostic process were also found.

scholarly journals Actual and perceived speedy diagnoses are associated with mothers’ unresolved reactions to a diagnosis of autism spectrum disorder for a child

Autism ◽  
2019 ◽  
Vol 23 (7) ◽  
pp. 1843-1852 ◽  
Author(s):  
Phil Reed ◽  
Ashleigh Giles ◽  
Shonagh White ◽  
Lisa A Osborne
Keyword(s):  
Autism Spectrum Disorder ◽  
Parenting Stress ◽  
Strong Relationship ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Psychological States ◽  
Anxiety Depression

Reaction to a child’s diagnosis can strongly affect the parent, but little is known about the aspects of the diagnostic process associated with such reactions. The pre-diagnostic levels of anxiety, depression, and parenting stress of 67 volunteer mothers of children subsequently diagnosed with autism spectrum disorder were assessed, along with the children’s functioning. The speed and number of professionals involved in the diagnosis were recorded, and mothers completed a post-diagnosis assessment of their perceptions of the process. Longer actual and perceived diagnosis speeds predicted resolved reactions to diagnosis. Mothers’ psychological states pre-diagnosis did not predict reactions to diagnosis. Providing a measured diagnostic process, and strong relationship with mothers, rather than aiming for speed alone, may well be more productive for the parent and child.

“Best Things”: Parents Describe Their Children with Autism Spectrum Disorder Over Time

2021 ◽  
Author(s):  
Katherine T. Cost ◽  
Anat Zaidman-Zait ◽  
Pat Mirenda ◽  
Eric Duku ◽  
Lonnie Zwaigenbaum ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Over Time

scholarly journals Diagnosis despite clinical ambiguity: physicians’ perspectives on the rise in Autism Spectrum disorder incidence

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Michael Davidovitch ◽  
Dorit Shmueli ◽  
Ran Shmuel Rotem ◽  
Aviva Mimouni Bloch
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Mental Illnesses ◽  
Spectrum Disorder ◽  
Medical Community ◽  
Categorical Variables ◽  
Diagnostic Process ◽  
Child Neurology ◽  
Chi Square ◽  
Child Psychiatrists

Abstract Background To provide insight on physicians’ perspectives concerning recent changes in the incidence and diagnostic process of Autism Spectrum Disorder (ASD) compared to other mental and neurodevelopmental disorders. Method A questionnaire was sent to 191 specialists in child neurology and child development, and 200 child psychiatrists in Israel. Information was collected on professional background, as well as on physicians’ opinions concerning the accuracy and rate of ASD diagnosis compared to that of cerebral palsy (CP), mental illness, and Attention Deficit Hyperactivity Disorder (ADHD). For each closed-ended question, a global chi-square test for categorical variables was performed. Results 115 (60.2%) of specialists in child neurology and development, and 59 (29.5%) of child psychiatrists responded. Most physicians (67.2%) indicated that there was a moderate/significant increase in the incidence of ASD, which was higher than similar responses provided for CP (2.9%, p < 0.01) and mental illnesses (14.4%, p < 0.01), and similar to responses provided for ADHD (70.1%, p = 0.56). 52.8% of physicians believed that in more than 10% of clinical assessments, an ASD diagnosis was given despite an inconclusive evaluation (CP: 8.6%, p < 0.01; mental illnesses: 25.8%, p = 0.03; ADHD: 68.4%, p = 0.03). Conclusion The clinicians perceive both ASD and ADHD as over-diagnosed disorders. The shared symptomology between ASD and other disorders, coupled with heightened awareness and public de-stigmatization of ASD and with the availability of ASD-specific services that are not accessible to children diagnosed with other conditions, might lead clinicians to over-diagnose ASD. It is advisable to adopt an approach in which eligibility for treatments is conditional on function, rather than solely on a diagnosis. The medical community should strive for accurate diagnoses and a continuous review of diagnostic criteria.

scholarly journals Parental evaluation of a revised autism spectrum disorder diagnostic process for children under 36 months of age

2021 ◽  
Author(s):  
Jean-François Lemay ◽  
Shauna Langenberger ◽  
Scott McLeod
Keyword(s):  
Autism Spectrum Disorder ◽  
Early Intervention ◽  
Parent Education ◽  
Positive Impact ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
High Level

Abstract Background The Alberta Children’s Hospital-Autism Spectrum Disorder Diagnostic Clinic (ACH-ASDC) was restructured due to long wait times and unsustainable clinic workflow. Major changes included the initiation of pre- and post-ASD parent education sessions and distinct ASD screening appointments before the ASD diagnostic appointment. Methods We conducted a parental program evaluation in summer 2018 of the ACH-ASDC. We used a cross-sectional survey to evaluate key outcomes including parental satisfaction, and the percentage of families obtaining access to government supports and early intervention programs. Results For the 101 eligible patients diagnosed with ASD under 36 months of age 70 (69.3%) parents agreed to participate. The mean diagnostic age of the children diagnosed with ASD was 30.6 months (SD=4.1 months). There were no statistically significant age differences between biological sexes. Ninety-three per cent of parents felt that ASD educational sessions were useful, and 92% of parents were satisfied to very satisfied with the overall ASD diagnostic process. Ninety per cent of parents had access to at least one of the key resources available for ASD early intervention in our province following diagnosis. Parents reported a positive impact on intervention provided to their child in the areas of communication, social interaction, and behaviour. Conclusion Parents of children diagnosed with ASD expressed a high level of satisfaction with the restructured ACH-ASDC process. Implementing parent education sessions was well received and met parents’ needs. Parents were able to access intervention services following diagnosis and reported positive impacts for their child. Re-envisioning program approaches to incorporate novel strategies to support families should be encouraged.

scholarly journals Resources, Problems and Challenges of Autism Spectrum Disorder Diagnosis and Support System in Poland

2021 ◽  
Author(s):  
Anna Lenart ◽  
Jacek Pasternak
Keyword(s):  
Autism Spectrum Disorder ◽  
Support System ◽  
Autism Spectrum ◽  
Diagnostic Tools ◽  
Diagnostic Process ◽  
Autism Diagnosis ◽  
Autism Spectrum Disorder Diagnosis ◽  
Effective System ◽  
Diagnostic Standards ◽  
And Control

AbstractThe article refers to resources, problems and challenges of autism diagnosis and support system in Poland. The resources include: the increasing number of specialists, diagnostic and therapeutic centres, well-established course of education for people working with youths, standardised and normalised diagnostic tools. The diagnostic process is not without some areas in need of our focus: the tendency of some specialists to make unauthorised diagnosis, overshadowing; underestimation of comorbidity of ASD with other disorders. The challenges refer to introducing an effective system of monitoring the services provided in form of certification and control in order to prevent their abuse, initiating category of temporary diagnosis; paying more attention on individual’s resources, better cooperation among specialists, teachers and families, developing and unifying diagnostic standards.

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