Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK…

Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (1) developed and implemented a toolkit to tailor ASD evaluation feedback to families' needs, and (2) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit…

Purpose: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. Methods: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective…

Our goal was to systematically identify, appraise and synthesise the qualitative research on parents' experiences of the autism assessment process. The empirical studies were quality appraised using the Critical Appraisal Skills Programme tool. We synthesised the data using a meta-synthesis approach. Parents' experiences were categorised into four…

Since the mid-90s, the number of children treated for bipolar disorder has increased considerably. As a result, the diagnosis was considered more closely, and the DSM-5 proposed a new diagnosis: Disruptive Mood Dysregulation Disorder (DMDD). This is a relatively new diagnosis in the psychological community, causing a lack of agreement on treatment…

Visual impairment affects an estimated 19 million children under 15 globally, with 12 million of them having vision issues that could be diagnosed and corrected, leaving 7 million children under 15 with significant visual impairments (WHO, 2021). The impact of receiving a visual impairment diagnosis can affect many aspects of a caregiver's life…

There has been limited research on families of autistic children in Ecuador, especially in relation to their experiences of accessing a diagnosis and associated support. In this study, we surveyed 767 families about their diagnostic and post-diagnostic journeys. Of these, 651 families had children who had received a formal autism diagnosis. In…

Some parents experience concerns relating to their child's development and seek clinical assessments for their child's behaviour. We sought to understand the concerns that led parents to seek a general clinical assessment where some children were diagnosed with autism spectrum disorder. We conducted a systematic review to identify the types of…

Perceptions of parents of young children receiving early intervention are important to understand. Parents have valuable opinions on the delivery of early interventions services and can provide critical feedback that can help professionals revise their existing early intervention delivery modalities. In the current study, we examined the…

To assess whether genetic test results identifying the cause of a child's autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving…

Diagnostic assessment for autism spectrum disorder (ASD) is a complex and often stressful process for parents. This systematic review synthesized results of 26 articles that reported on factors related to parental (dis)satisfaction with the diagnostic process for ASD. The results are described in terms of factors related to satisfaction and those…

Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD…

The diagnosis of autism is often delivered solely to the parents, a practice that forces them to confront the dilemma of whether, when and how they should disclose it to the child. The present study seeks to probe deeper into the phenomenon of diagnosis disclosure and lead to a clearer understanding of the dilemmas parents? face. This article…

Sensory features are common and impairing in autism spectrum disorder (ASD), but there are few observational sensory assessments that are valid across ages. We used the Sensory Processing 3-Dimensional (SP3-D) observed Assessment and parent-reported Inventory to examine sensory responsivity in 41 ASD and 33 typically-developing (TD) youth across…

Participation in Organised Extracurricular Social Activities (OESA) can provide positive outcomes for children. This study investigated whether children aged 4 to 12 years diagnosed with autism differ in their OESA participation and experience compared to neurotypical peers. Parents of autistic children (n = 35) and those of neurotypical peers (n…