scholarly journals Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies

2021 ◽  
Author(s):  
Michelle I. J. Snijder ◽  
Ilse P. C. Langerak ◽  
Shireen P. T. Kaijadoe ◽  
Marrit E. Buruma ◽  
Rianne Verschuur ◽  
...  
Keyword(s):  
Mixed Method ◽  
Early Identification ◽  
Autism Spectrum ◽  
Diagnostic Process ◽  
Identification Process ◽  
Parental Experiences ◽  
Initial Care ◽  
Parental Perspectives ◽  
Improvement Strategies ◽  
Professional Perspectives

AbstractWhereas it is well documented how parents experience the diagnostic process of their child with autism spectrum disorder (ASD), less is known about parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. This mixed-method study investigated these experiences as well as barriers and improvement strategies regarding early detection in the Netherlands. A parental survey (N = 45) showed that, on average, initial concerns started at 22 months. A focus group (N = 10) revealed multiple barriers and proposed strategies of improvement in three domains: “Knowledge and Expertise”, “Attention to Parental Needs” and “System and Organization”. Strategies to improve early identification will be discussed based on parental perspectives and professional perspectives.

scholarly journals Early Identification of Young Children with ASD and Other Developmental Disabilities: Areas for Improvement

2021 ◽  
Vol 9 (5) ◽  
Author(s):  
Elizabeth Crais
Keyword(s):  
Developmental Disabilities ◽  
Early Identification ◽  
Autism Spectrum ◽  
Developmental Screening ◽  
Pediatric Practice ◽  
Identification Process ◽  
Ongoing Effort ◽  
Closing The Loop ◽  
Pediatric Providers

There continues to be an ongoing effort in pediatric practice to improve screening and referral rates of children with potential developmental disabilities including Autism Spectrum Disorder (ASD). Successes have been seen in practices relative to broad developmental screening efforts and increasing improvement in screening for ASD. However, gaps continue to occur in screening, referral for further evaluation, and follow-up that allows the practice (and treating provider) to know the outcome of the referral. This type of “closing the loop” between providers and referral sources is necessary for the practice to function as a medical home for the child and family. In addition, caregivers have highlighted many challenges in the early identification process in working with their primary care provider. This manuscript discusses some of the barriers to early identification for children and their families, successful strategies for more consistent screening and closing the loop following referral, and highlights parental perceptions about identification and referral. Further, practical approaches that could be used by pediatric providers are highlighted.

scholarly journals How UK health care professionals conceptualise parental experiences of the diagnostic process for autism spectrum disorder: A qualitative study

2021 ◽  
Vol 9 ◽  
pp. 205031212110313
Author(s):  
Natasha Faye Daniels ◽  
Barry Coughlan ◽  
Robbie Duschinsky
Keyword(s):  
Health Care ◽  
Autism Spectrum Disorder ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Diagnostic Delay ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Parental Experiences ◽  
Diagnostic Pathway

Objectives: Much of the literature on diagnostic experiences of autism focuses on parental perspectives. Few studies have explored how health care professionals conceptualise parental experiences of the diagnostic process. The current study examines clinical perspectives of the diagnostic process with a focus on the perceived impact of assessment on families. Methods: Qualitative interviews were conducted with 25 health care professionals from various National Health Service child and adolescent mental health services and general practices in the United Kingdom. Interviews were transcribed verbatim and data were analysed using a thematic approach. Results: Two main themes were identified: (1) stress and the autism spectrum disorder diagnostic process and (2) expectations of the diagnostic pathway. The main sources of stress perceived by the health care professionals related to diagnostic delay and ambiguity around the diagnostic process, with parents facing significant hurdles in understanding their child’s behaviour. Many health care professionals also reported a struggle to navigate differing expectations of the diagnostic process between parents and clinicians, as well as managing objectivity in the face of significant distress. Parent internalised stigma and guilt was a key component of the health care professional’s perception of sources of stress around the diagnostic process. Conclusion: The vast majority of clinicians recognised the diagnostic pathway as a significant source of stress for parents, with many hurdles and battles to finalise the process.

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 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 Emerging behavioral and neuroimaging biomarkers for early and accurate characterization of autism spectrum disorders: a systematic review

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Chandrakanta S. Hiremath ◽  
Kommu John Vijay Sagar ◽  
B. K. Yamini ◽  
Akhila S. Girimaji ◽  
Raghavendra Kumar ◽  
...  
Keyword(s):  
Early Identification ◽  
Longitudinal Research ◽  
Pathological Condition ◽  
Neurodevelopmental Disorder ◽  
Behavioral Assessment ◽  
Autism Spectrum ◽  
Quantitative Mri ◽  
Assessment Tools ◽  
Identification And Characterization

AbstractThe possibility of early treatment and a better outcome is the direct product of early identification and characterization of any pathological condition. Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impairment in social communication, restricted, and repetitive patterns of behavior. In recent times, various tools and methods have been developed for the early identification and characterization of ASD features as early as 6 months of age. Thorough and exhaustive research has been done to identify biomarkers in ASD using noninvasive neuroimaging and various molecular methods. By employing advanced assessment tools such as MRI and behavioral assessment methods for accurate characterization of the ASD features and may facilitate pre-emptive interventional and targeted therapy programs. However, the application of advanced quantitative MRI methods is still confined to investigational/laboratory settings, and the clinical implication of these imaging methods in personalized medicine is still in infancy. Longitudinal research studies in neurodevelopmental disorders are the need of the hour for accurate characterization of brain–behavioral changes that could be monitored over a period of time. These findings would be more reliable and consistent with translating into the clinics. This review article aims to focus on the recent advancement of early biomarkers for the characterization of ASD features at a younger age using behavioral and quantitative MRI methods.

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.

Towards a better understanding of girls on the Autism spectrum: educational support and parental perspectives

2021 ◽  
pp. 1-20
Author(s):  
Laura Gray ◽  
Ella Bownas ◽  
Lucy Hicks ◽  
Emma Hutcheson-Galbraith ◽  
Sandra Harrison
Keyword(s):  
Autism Spectrum ◽  
Educational Support ◽  
Parental Perspectives

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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