Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

Autism Spectrum Disorders in Mali: Parental concerns about child developmental milestones and late diagnostic age

Background: In Mali, the national health facility-based prevalence of autism spectrum disorders (ASD) was 4.5% (105/2,343) and the age of first medical visit for autistic children was around 7 years old in 2018. Parental recognition of developmental abnormalities initiates the early autism detection and diagnosis. Our aim was to investigate if parental concerns were associated with early first medical visits and subsequent ASD diagnostic in Mali. Methods: We conducted a pilot study from November 2017 to July 2019. We surveyed parents of 57 out of 60 available autistic children aged 3-14 years old. Results: Parents were concerned over verbal communication in 54.1% and reciprocal social interaction in 43.8%. Children with ASD had their first medical visit after 18 months old in 66.7%, ≥ two medical visits in 87.7%, and were identified after 36 months old in 76.8%. Conclusion: Parental concerns were not significantly associated with early first medical visit and ASD identification. Our results will guide future full scale studies on parental concerns in ASD in Mali.

Autism Spectrum Disorders in Mali: Parental concerns about child developmental milestones and late diagnostic age

Background In Mali, the health facility-based prevalence of autism spectrum disorders (ASD) was 4.5% (105/2,343) and the age of first medical visit for autistic children was around 7 years old in 2018. Parental recognition of developmental abnormalities initiates the early autism detection and diagnosis. Our aim was to investigate if parental concerns were associated with early first medical visits and subsequent ASD diagnostic in Mali. Methods We conducted a pilot study from November 2017 to July 2019. We surveyed parents of 57 autistic children aged 3-14 years old. Results Parents were concerned over verbal communication in 54.1% and reciprocal social interaction in 43.8%. Children with ASD had their first medical visit after 18 months old in 66.7%, ≥ two medical visits in 87.7%, and were identified after 36 months old in 76.8%.Conclusion: Parental concerns were not significantly associated with early first medical visit and ASD identification. A full scale study will be conducted for more consistent results.

Barriers and Facilitators to Parental Help-Seeking for Young Children With Developmental Delays: A Qualitative Investigation

This study examined influences, factors, and processes associated with parental recognition and response to developmental concerns through interviews and focus groups with six Spanish- and 17 English-speaking parents of children aged 2 weeks to 4.5 years with developmental concerns. Results revealed that social support, perceptions of perceived threat (the child’s susceptibility to developmental problems and potential severity of the issue), evaluation of the benefits and barriers of seeking help, self-efficacy, and referral coordination influenced parents’ recognition and response to developmental concerns. Experiences and paths to services varied greatly, illustrating the lack of consistency within service systems. Understanding these influences in identification and intervention is the first step in addressing how to better support parents and their children.

“Tell Me When ‘Normal’ Stops”: How Parents Recognized Their Child’s Mental Illness

Many parents do not recognize psychological disorder, and current mental health service delivery programs are not sufficiently responsive to the early help-seeking dynamics of families. This mixed-methods study explored Colorado parents’ experiences of recognizing their child’s mental illness as a precursor to seeking treatment, revealing that the phenomenon of parental recognition was a process of “waiting to hear that ‘normal’ had stopped,” wherein parents miscategorized symptoms as typical behaviors in a passing developmental phase. Prior experience with mental illness appeared to significantly decrease both the length of time and the level of distress necessary for recognition. Ultimately, recognition did not occur until someone in the parents’ social network explicitly validated their concerns, which galvanized them to seek treatment. The results of this study can have wide applications for positive social change, because many chronic mental disorders manifest in childhood and benefit from early and sustained treatment. Further, mental health underscores many societal issues such as homelessness, school dropout rates, child abuse and neglect, foster care, and prison overpopulation. Positive social change and parental recognition can be promoted through public policies and programs such as universal mental health screening, mental health literacy, and school and health policies that are more supportive and responsive to the early help-seeking needs of children and families