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.

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 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.

scholarly journals The earlier, the better? Diagnostic experiences of parents in a community-based early intervention system for preschool children with autism

2019 ◽  
Vol 4 ◽  
pp. 239694151984520
Author(s):  
Mitsuaki Iwasa ◽  
Yasuo Shimizu ◽  
Ikuko Hara ◽  
Miho Imai ◽  
Hideo Honda
Keyword(s):  
Autism Spectrum Disorder ◽  
Preschool Children ◽  
Early Intervention ◽  
Individual Case ◽  
Autism Spectrum ◽  
Parental Satisfaction ◽  
Spectrum Disorder ◽  
Diagnostic Process ◽  
Diagnostic Disclosure ◽  
The Individual

Background and aims In many countries, early detection and diagnosis of autism spectrum disorder is largely dependent on parents’ initial concern with early symptoms of autism spectrum disorder. Previous research on parental perceptions of the autism spectrum disorder diagnostic process indicates that parental satisfaction may be due to either the timing of the diagnostic notification or the provision of post-diagnostic support. The objective of this research is to study the diagnostic notification process and its impact on parents who are informed of their young child’s diagnosis before they notice a problem and whose child undergoes early intervention therapy. Methods Eighty parents of preschool children diagnosed and undergoing early intervention for autism were surveyed to examine their experience of the diagnostic disclosure process. Results Of 68 respondents, 39 (58.2%) approved of the timing of diagnostic notification, while 10 of 13 dissatisfied respondents indicated that the diagnosis was communicated too late. However, there was no correlation between a higher degree of parental satisfaction with the diagnostic notification process and earlier timing of notification. Conclusions Although it is preferable to communicate a diagnosis of childhood autism as soon as possible, findings suggest that a highly individualized approach, allowing a degree of latitude in the timing of notification, may be permissible, depending on the individual case and parental readiness to receive the diagnosis. Implications Findings have clinical implications related to the concept of optimality of diagnostic disclosure as related to the diagnostic notification process, though later notification tends to lead to more dissatisfaction.

scholarly journals An association of intrapartum synthetic oxytocin dosing and the odds of developing autism

Autism ◽  
2020 ◽  
Vol 24 (6) ◽  
pp. 1400-1410 ◽  
Author(s):  
Stephen M Soltys ◽  
Jill Rose Scherbel ◽  
Joseph R Kurian ◽  
Todd Diebold ◽  
Teresa Wilson ◽  
...  
Keyword(s):  
Body Mass Index ◽  
Autism Spectrum Disorder ◽  
Cesarean Section ◽  
Odds Ratio ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Autism Spectrum Disorder Diagnosis ◽  
High Cumulative Dose ◽  
First Time ◽  
Synthetic Oxytocin

A case-control study was performed to determine whether an association exists between exposure to synthetic oxytocin and a subsequent autism spectrum disorder diagnosis; 171 children under age 18 meeting Diagnostic and Statistical Manual of Mental Disorders (5th ed.) autism spectrum disorder criteria were compared to 171 children without autism spectrum disorder diagnosis matched by gender, birth year, gestational age, and maternal age at birth. A conditional logistic regression model was used to examine the association of clinical variables and autism spectrum disorder. Significantly elevated odds ratios for autism spectrum disorder were associated with first-time Cesarean section (odds ratio = 2.56), but not a repeat Cesarean section. Odds ratios were also significantly elevated for subjects whose mother’s body mass index was 35 or higher at birth (odds ratio = 2.34) and subjects in which the reason for delivery was categorized as “fetal indication” (odds ratio = 2.00). When controlling for these and other variables, the odds of developing autism spectrum disorder were significantly elevated in males with long duration of exposure (odds ratio = 3.48) and high cumulative dose of synthetic oxytocin (odds ratio = 2.79). No significant associations of synthetic oxytocin dosing and autism spectrum disorder were noted in female subjects. The association of elevated autism spectrum disorder odds found with high duration and high cumulative dose synthetic oxytocin in male subjects suggests the need for further investigation to fully elucidate any cause and effect relationship. Lay abstract Oxytocin is a hormone naturally produced in the human body that can make the womb (uterus) contract during labor. Manufactured oxytocin is frequently given to mothers in labor to strengthen the contractions or in some cases to start labor. This study compared children with a diagnosis of autism and children without autism to see whether children with autism received more oxytocin during labor. The odds of a child having an autism diagnosis were significantly higher if the delivery was a first-time Cesarean section, if the mother had a body mass index of 35 or higher, or if the reason for delivery were a range of fetal problems that made delivery necessary. It was found that boys who were exposed to oxytocin for longer periods of time during labor and received higher total doses of oxytocin had significantly higher odds of developing autism. There were no significant associations of oxytocin dosing and autism noted in female children. As this is the first study to look at any relationship between the dose of oxytocin received during labor and the odds of developing autism, further study needs to be done to determine whether there is any cause and effect relationship. Thus, at this time, there is no recommended change in clinical practice.

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