Caregivers Of Autistic Children Research Articles

Grief among parents of children with autism spectrum disorders: a systematic review

Objectives Bringing up a youngster with Autism Spectrum Disorders (ASD) is a multifaceted issue with major changes in family dynamics. Parents experience great distress and feel anxious or sad throughout the diagnostic process and the time after the diagnosis. There are very few studies on the aspect of grief in parents of children with ASD. Hence an attempt was made to do a systematic review of the available literature to assess the prevalence and pattern of grief among parents of children with autism spectrum disorder. Methods A systematic review of available literature was done up to November 2021. The data was extracted from the literature by two independent observers and any conflict was resolved by a third person. Results The two predominant disorders seen in these parents are grief and distress. The emotions usually described are the sense of loss leading to pain, parental expectations being put into peril, shock, turmoil, and a feeling of helplessness in family members after hearing the diagnosis. Conclusions A literature search has revealed a huge lacuna in studies related to the feelings of grief experienced by the caregivers of autistic children. Emotional stability and coping of the parents are highly essential not only for the rehabilitation of the child but also to make an improvement in the quality of life of the parents. The primary caregivers of children in the spectrum suffer very powerful and incessant emotions of sadness and grief. The feelings of mothers and fathers of children with autism from recent studies include an unexpected sense of losing a child along with shock, denial, fearfulness, guilt, rage, and/or sorrow. Two most common affective reactions of these parents were grief (“chronic sorrow” or “nonfinite grief”) and distress. The maternal experience of grief was found to be more especially in children with recent diagnoses of autism.

Depression and parental distress among caregivers of autistic children: a serial mediator analysis in caregivers of autistic children

BackgroundThis study aimed to investigate the relationship between the severity of autism, emotional and behavioral problems of autistic children, internalized stigma, depressive symptoms, and primary caregiver parental stress. Specifically, we explored the mediating role of internal stigmatization and total difficulties of individuals with autism on parenting stress and depressive symptoms of the primary caregiver.MethodMothers of 93 children with autism were included in the study. The mothers were given the Beck Depression Inventory (BDI), The Internalized Stigma of Mental Illness Scale (ISMI), the Autism Behavior Checklist, the Parenting Stress Index-Short Form, Strength, and Difficulties Questionnaire -Parent Form (SDQ-P).ResultsAs a result of our study, the emotional and behavioral problems of the child and the internalized stigmatization felt by the parent played a mediator role in the relationship between the child’s autism severity and the parent’s stress and depressive symptoms.ConclusionsOur findings highlight that internalized stigmatization and behavioral characteristics of individuals with autism are among the most critical problems for their primary caregivers. These results have important implications for the development of interventions aimed at reducing the internalized stigma experienced by primary caregivers of individuals with autism and for improving their mental health outcomes.

Social Support and Parental Stress as Factors Predicting Resilience among Caregivers of Autistic Children

Social Support and Parental Stress as Factors Predicting Resilience among Caregivers of Autistic Children

Relationship between caregiver adverse childhood events and age of autism spectrum diagnosis

BackgroundThe age at which children are diagnosed with autism spectrum disorder (ASD) has not significantly decreased in the past 20 years. Adverse childhood events (ACEs) experienced by caregivers of autistic children may predict delays in caregivers attending ASD diagnostic evaluations, negatively impacting the age at which the child is diagnosed with ASD. The purpose of this study was to further explore the caregiver delay response by analyzing recurring events common in caregivers of children at risk for ASD. MethodsWe used a quantitative research design with convenience sampling to categorize caregivers of children referred for an ASD diagnostic evaluation into three groups based on their ACEs score and medical history. FindingsA higher percentage of caregivers with four or more ACEs compared to the national average was noted. Parental separation or divorce, verbal aggression, emotional abuse, and parental alcohol or substance abuse occurred most frequently, and the latter predicted a prolonged time in attending the diagnostic evaluation. DiscussionACEs experienced by caregivers of children with ASD may delay the age of ASD diagnosis. Further investigation into the effect of ACEs on caregivers' mental health status and executive functioning is warranted to develop best practice for assisting caregivers in ASD recognition, diagnosis, and care management. Application to practiceClinicians should consider caregiver ACEs score when referring a child for a diagnostic developmental evaluation. Resources to address caregiver mental health needs should be provided at the onset of the referral process to increase the likelihood of caregiver adherence.

Clinically elevated depression scores do not produce negative attentional biases in caregivers of autistic children.

Depression scores in caregivers of autistic children often fall in the clinical range. The attention of clinically depressed individuals tends to be biased toward negatively toned information. Whether caring for an autistic child might also be characterized by a negative attentional bias was explored here. A sample of N = 98 (57 caregivers and 41 controls) completed questionnaires assessing depressive symptoms. Orienting attention to (i.e., vigilance), and shifting attention away from (i.e., disengagement), negative information was assessed via an online version of the emotional face dot probe task. Mean depression scores in caregivers, falling in the borderline clinical range, were significantly higher compared with controls. Groups, however, were indistinguishable with respect to vigilance and disengagement, and these attentional indices were unrelated to depression scores. Caring for an autistic child, while associated with borderline clinical depression scores, was not characterized by a negative attentional bias. Findings are discussed in the context of methodological shortcomings and recommendations for future research.

Mistreatments Of Autism Spectrum Disorder.

The Editor, Autism Spectrum Disorder (ASD) is an umbrella, constructed to describe difficulties in social communication, with a very confined range of interests and fixed patterns along with atypical sensory-motor behaviors beginning in early childhood. It is estimated that over 350,000 children are on the spectrum in Pakistan, and the prevalence continues to rise(1). Research and studies have shown that early intervention has a positive effect on the later development of children on the spectrum (2). In a child’s life, a sensitive stage of development called the critical period is the time when new connections (synapses) are made that are influenced by environmental stimuli and personal experiences of the child (3). Established diagnosis and intervention in this period influences the brain’s neural plasticity. Hence filling the gap between the child’s growth margin and typically developing peers and supporting their way into adulthood with the competencies necessary to live an independent and carefree life. In underdeveloped nations like Pakistan, there is inadequate knowledge and awareness of ASD. Children are misdiagnosed and caregivers are deluded into the thought of a cure of autism due to the existence of various superstitions and necromantic beliefs(4). Different oil mixtures, herbal medicines, and several other home remedies are practiced: some to elude over-sensitivity or under-sensitivity, some to magically make the child speak etc. However, these practices have no effect, other than losing precious years of the child’s life (5). Parents and caregivers of autistic children should be counseled that ASD is not a disease to cure but a way to adapt. They should be convinced that being autistic is not because some pathogen invaded the brain; rather it is because the brain is wired differently and functions at its own pace. Seminars and webinars should be held for caregivers to help them deal with the psychosocial issues and the social stigma surrounding ASD. There is also a need to create awareness at the government level to better equip people, professionals, and healthcare systems to better cater for the needs of children with ASD. Moreover, efforts should be made to make ASD screening a part of universal pediatric screening so that intervention is provided as early as possible. There is a growing need to understand that ASD is not a curse manifested but an individuality to celebrate.

Development of oral health resources and a mobile app for caregivers and autistic children through consensus building.

Caregivers of autistic children often lack knowledge regarding oral homecare and when and where to see the dentist. To address this need, we developed a series of information on oral health. An autistic child assisted in developing two social stories to showcase a dental visit. A mobile app was developed to deliver the above mentioned. Other features include creation of customised social stories and visual schedule and an inbox to allow dentists to send messages to parents. The developed information and social stories were reviewed by experts and parents. The app also underwent anonymous and independent testing by parents. Overall the information and app were well received by the experts and parents.

Affiliate stigma and related factors among parents of autism spectrum condition: A pilot study from mainland China.

Autistic individuals show differences in social and behavioral performances. Autism-related stigma affects autistic children as well as their caregivers (e.g., parents). Research has shown that stigmatizing reactions from others toward caregivers of autistic children are common and that these caregivers suffer from affiliate stigma. To examine the level of affiliate stigma among parents of autistic children and its predictive factors in mainland China. This was a cross-sectional study involving parents of autistic children from mainland China. The sample consisted of 183 parents (mean age = 36.5 years). The measures assessed included demographic characteristics, and parents completed two questionnaires. The Social Responsiveness Scale (SRS) was used to evaluate the characteristics of children by their parent's subjective assessments, and the Affiliate Stigma Scale (ASS) was used to investigate the affiliate stigma level of parents. The affiliate stigma levels of parents of autistic children were high, and the mean score of the affect subscale was higher than those of the other subscales. The mean ASS score differed significantly between employed and unemployed parents, those aged under 40 and over 40, and high- and low-income parents. The hierarchical regression analysis showed that parents' age, monthly household income, and mean SRS score were significant predictors of the mean ASS score. The results indicated that parents of autistic children and their children need more social support and inclusion in mainland China. The present study confirms the importance of studying primary caregivers (i.e., parents) in the context of traditional mainland Chinese culture. Although preliminarily, findings showed that the affiliate stigma levels of parents are high in mainland China, probably due to the influence of traditional cultural values. Moreover, considering the importance of autistic child characteristics, our results suggest that we should increase public knowledge of autism, enrich the general understanding of autism, and reduce the autism-related stigma of parents in mainland Chinese societies.

Realist evaluation of a transdisciplinary mealtime management service for autistic children.

Mealtimes and eating can be difficult for autistic children. A service where different professions work together is required to address the varied and complex mealtime difficulties of autistic children. Little is known about what is needed for such services to be effective. We interviewed six caregivers of autistic children who were engaged in a mealtime service and 10 therapists who are involved in delivering the service to understand their perspectives on the factors that were driving the effectiveness of the mealtime service. We found that different health professionals from different disciplines working together, focusing on adapting intervention to the child and family and managing expectations of the caregiver were important in contributing to outcomes of the mealtime service. The findings of this study can be used to inform the development of more effective interventions and services to support the well-being and development of autistic children.

Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review

We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.

Perceived Stigma and Barriers to Accessing Services: Experience of Caregivers of Autistic Children Residing in Latin America

BackgroundRelationship of perceived stigma and barrier to service access among Latino populations with autism in cross-cultural settings has not been fully explored. AimThe present study explored the relationship between difficulty accessing services and perceived stigma among caregivers of autistic children in Latin America. Additionally, explore contextual factors that better explain the perception of stigma when accessing services. Methods and ProcedureApproximately 2500 caregivers from six Latin American countries completed an online survey. Descriptive inferential analysis and a pointbiserial correlation were conducted to understand direct relationship between difficulty accessing services and perceived stigma and to test their relationship. Added contextual factors contributing to this relationship were examined through a binary logistic regression. Outcomes and ResultsBarriers to accessing services predicted stigma. Contextual factors such as country of residence, frustration experienced by caregivers, gender of autistic child and challenging behaviours had higher odds of experiencing some form of perceived stigma. Conclusions and ImplicationsThese results suggest experiences with stigma to be heavily influenced by environmental factors such cultural differences which in combination with contextual factors could further increase the likelihood of perceiving stigma. When observing stigma within a social–cognitive approach, it is possible that a strong-held adherence to cultural norms, in addition to negative experiences (e.g., frustration) when accessing services, could be influencing caregivers perceived stigma.

The Relationship between Anxiety, Social Skills Deficit and Autism Spectrum Disorder among Autistic Children in Nairobi, Kenya.

This paper investigates the relationship between anxiety and social skills deficit and ASD in children living with autism. Focusing on Nairobi County in Kenya, the author engaged parents and teachers of 40 children and adolescents aged 5-21 years old. The study adopted a quasi-experimental design in two schools representing the experimental (n=20) and control (n=20) schools. Questionnaires were used for data collection. The intervention was done immediately after the baseline data was collected and followed up for six months. There was a significant decline in social skills deficits p=0.006 (95% C.I (4.97, 27.8)). In addition, remission of anxiety and social skills deficits is achievable by MASSI in children and adolescents with ASD in schools. The Social Responsiveness Scale (SRS-2) was used to measure the Autism Spectrum Disorder with scores ranging from 1- not accurate to 4 – almost always true. The indicator depicts reliable internal consistency of 0.90, with a higher score implying greater severity of the social deficit syndrome. The study found out that there was a correlation between the symptoms of anxiety and social skills deficits, anxiety problems in school-age children and adolescents and finally, social skills with ASD among the studied population. The study recommended that parents and caregivers of autistic children ought to adopt Skinner's contingency of reinforcement, address and support children's necessities having ASD and finally raising funds would enable the Ministry of Education to develop a curriculum that would address, prioritise and focus on the skill deficits most specific and appropriate to autism.

The Domain of Challenges and Coping Mechanisms Amongst Caregivers of Autistic Children

Autism spectrum disorder present challenges, stress, and burdens to caregivers. In order to ensure the quality of life especially the well-being of caregivers, they need necessary supports. This study uses a qualitative method which is in-depth interviews to explore the domains of caregivers’ burden and challenges as well as their coping mechanisms. This study has been conducted among caregivers registered with NASOM Melaka. A total of 8 respondents participated in this study voluntarily, consisting of 7 women and a man. The data was collected via a series of online interviews. The analysis was conducted based on thematic analysis. Financial, emotional, physical, and social life challenges are the domains contributing to the burden of caregiving. The financial issue is reported to be the most important challenge in caregiving. This is due to the high costs involved in the management of treatment and therapy, as well as the cost of food and daily expenses. Acceptance and spiritual aspects are the positive coping mechanisms for the management and caregiving of autistic children. In conclusion, caregivers also need emotional and practical supports from family members. Government and Non-Governmental Organisations should be more attentive to the need and constraints faced by the caregivers, especially financial constraint.

The moderating effect of financial stress and autism severity on development of depression among parents and caregivers of Autistic children in Taif, Saudi Arabia.

Background:Autistic spectrum disorder (ASD) is a common problem in the Kingdom of Saudi Arabia. However, little research explored the extent of anxiety and depressive disorders in parents of children with ASD.Method:Descriptive questionnaire-based cross-sectional survey of a sample of parents of children with ASD who attended Prince Mohammed Bin Salman Autistic Centre, Ministry of defense, Taif city.Results:The study included (n = 50) parents. The prevalence of mild depression was 30%, whereas the prevalence of moderately severe depression was 68%. Increased ASD severity level was associated with a significant impact on the PHQ-9 total score (level II was 1.293 times level I to have an increased PHQ-9 score, and level III was 1.530 times level I to have an increased PHQ-9 score). Economic status did not significantly alter depressive symptoms.Discussion and Conclusion:ASD diagnosis in Saudi children is associated with high parental depressive prevalence. However, this result could be bidirectional. Stigma, future-related worry, and stress could mediate parental depressive symptoms. Our findings in Saudi parents of children with ASD corroborate the established association between parental depressive symptoms and ASD severity. Our results corroborated previous findings that neither parental gender nor child gender exert any substantial effect on predictability of depressive symptoms among parents of children with ASD. Comprehensive therapeutic packages for children with ASD should include treatment of emotional problems arising out of carer burden among their parents. Screening for parental emotional problems should be routine in autism treatment facilities.

Assess the knowledge on home care management of autistic children among caregivers

Autism is a developmental disability, with symptoms first observed during infancy. It is characterized by variants in communication abilities, personality, cognitive abilities and social skills. Typical behaviour in youngsters relies upon kid's age character and physical and enthusiastic turn of events. A kid's conduct is said to be average at his 7th year of age when he develops a concept of himself, begins to understand, gains respect for others, and develops a sense of responsibility. Children with autism tend to have poor social and emotional relationships with peers and are highly sensitive and perform ritualistic behaviours. As a primary responsibility and also an essential thing for the mothers/ caregivers is to understand their children's behaviours than mothers of typically developing children. Accurate knowledge of autism may aid parents in relating to their children's problematic behaviours. Accepting autism may promote feelings of parenting success. The present study aims to assess the knowledge on home care management of autistic children among caregivers. A quantitative non-experimental descriptive research design was conducted among 50 caregivers of autistic children. Non-probability convenient sampling technique was used to select samples. A self-structured questionnaire was used to collect demographic data, and their knowledge was assessed. The study results show most of the caregivers had moderately adequate knowledge regarding home care management of their autistic children and this emphasizes the need to educate them in understanding their children behaviour and their needs and improve the quality of life of their autistic children.

Determination of Knowledge of Caregivers about Dietary Practices of Autistic Children

<p><strong>Background and Objective</strong>: Autism belongs to a complex neurodevelopmental disorder. The lack of knowledge about dietary practices of autistic caregivers is perceived as the triggering factor of ‘Autistic Spectrum Disorder (ASD). In this particular ‘Knowledge, Attitude and Practice (KAP) Survey’ the knowledge (K) of nutrition, attitude (A) of children towards such nutrition and dietary practices (P) among the caregivers of autistic children. The pre-testing and post-testing for knowledge has been observed. Theknowledge questionnaire was designed to facilitate the caregivers to determine their knowledge regarding the dietary patterns of autistic children.<br /><strong>Methods: </strong>This quasi-experimental study comprised of 50 caregivers (particularly mothers, and fathers in a few instances) of autistic children enrolled at Amin Maktab Center for Special Education Lahore. The nutrition education program was developed and participants were enrolled. Analysis of the change in knowledge, attitude and practice of autistic caregivers through pre-testing and post-testing at a gap of four months was carried out using statistical tests.<br /><strong>Results:</strong> The pre-testing and post-testing phase of the study revealed significant improvement in (a) basic knowledge about nutritional needs of autistic children (22% vs. 100%), (b) practicing patient-tailored special diet (34% vs. 92%) and (c) resolution of food allergies (62% vs. 16%) in autistic children. The most important benchmark in this regard was Body Mass Index (BMI) of children where deranged BMI improved significantly (p = 0.000) to normal BMI in pre- and post-testing phases.<br /><strong>Conclusions:</strong> Lack of knowledge is higher among aforementioned caregivers of concerned autistic children. Adoption of nutrition education programs by anutistic caregivers helps in creating optimal knowledge, attitude and practices regarding nutritional needs of autistic children for effective targeted behavior and management.</p>

The Role of Self-Compassion in the Relationship between Post-Traumatic Growth and Psychological Distress in Caregivers of Children with Autism

Caregivers of children with Autism Spectrum Disorder (ASD) may experience varying degrees of both psychopathological symptoms and enriched personal growth. The mechanisms underlying these associations are not well understood. The aim of the current study was to explore the relationships between post-traumatic growth (PTG) and psychological distress, namely depression, anxiety and stress among caregivers of autistic children in China, with self-compassion as a potential relating factor. One hundred and twenty-one caregivers of children with ASD, ranged in age from 26 to 53, completed the questionnaires. The instruments utilized include a socio demographic questionnaire, Posttraumatic Growth Inventory (PTGI), the Chinese version of the Short Form Depression Anxiety Stress Scales (DASS-21) and the Chinese version of the Short Form Self-Compassion Scale (SCS-SF). The results showed that there was no significant linear or curvilinear relationship between PTG and psychological distress. PTG indirectly correlated with psychological distress through self-compassion. The positive and negative components of self-compassion uniquely correlated with PTG and psychological distress respectively. The findings of this study suggested that PTG may play a protective role of mental health among Chinese caregivers of children with ASD through enhancing self-compassion. More importantly, the current study suggested that self-compassion should be better conceptualized in order to move the relevant research forward.

The Experiences of Mothers Living with Autistic Children: A Qualitative Descriptive Phenomenological Approach

This study adopts a qualitative descriptive phenomenological approach to explore, analyze and document the experiences of mothers raising and living with autistic children. In doing so, the study recruited seven mothers of autistic children in Myanmar using a non-probability, purposive sampling method. Data was obtained through in-depth interviews and focus group discussion, and it was analyzed using Giorgi’s method. Six major themes emerged: loss of parental hopes and childhood significances, initial recognition and diagnosis, misunderstanding and assumptions about autism, mixtures of emotions experienced by the mothers, challenges in nurturing autistic children, and the mothers’ expectations about the future of their children. Raising and caring for an autistic child was challenging for the mothers as their children required constant care round the clock and for the entire span of their lives. Therefore, a comprehensive training in nursing is vital for these mothers. The findings of the study contribute to the literature on autism and forms as a basis for future research on this topic, especially on how living with an autistic child can have an effect on their siblings and other caregivers of autistic children using different approaches.

Experienced Burden by Caregivers of Autistic Children

Experienced Burden by Caregivers of Autistic Children

Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis

PurposeThe purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.Design/methodology/approachParticipants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.FindingsNearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.Originality/valueThe majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.