Perspectives from parents of autistic children on participating in early intervention and associated research.

Parents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it's important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for "what's important." The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.

Autistic children have been shown to have poorer bone health than their non-autistic peers, but previous evidence on this topic has been based on small clinical samples and is limited by how bone health has been measured. The association between autism and bone health may also reflect confounding by correlated genetic or environmental factors, but prior studies have not addressed this issue. We address these issues using data from a population-representative cohort of Australian children with bone health measured by peripheral quantitative computed tomography (pQCT) for both children and parents. Data for 1,274 children (66 autistic, 1,208 non-autistic) aged 11-12 years (50% male) were drawn from the Child Health CheckPoint within the Longitudinal Study of Australian Children. pQCT measures at the tibial diaphysis (ankle) and metaphysis (shin) were recorded using an identical protocol for children and one attending parent. Child autism was parent reported. Regression analyses were used to compare differences between autistic and non-autistic children, and between parents of autistic children and parents of non-autistic children. Our findings indicate poorer bone health as assessed by tibial pQCT among autistic children compared to non-autistic children at both the metaphysis and diaphysis. No differences in pQCT measures were found between parents of autistic and non-autistic children, suggesting no evidence of confounding by shared genetic or environmental factors. These findings reinforce the need to support improved bone development among autistic children and suggest that differences in bone health are likely driven by behavioural factors that are potentially amenable to intervention.

The objective of this study was to examine the prevalence and severity of parenting-related posttraumatic stress disorder (PTSD) and complex PTSD (CPTSD) in parents of autistic children in Denmark and Australia, compare rates to parents of neurotypical children, and assess diagnostic concordance between Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) text revision and International Classification of Diseases-11 criteria. An online survey assessed parenting-related PTSD and CPTSD in 2,971 Danish and 692 Australian parents of autistic and neurotypical children using the International Trauma Questionnaire, PTSD Checklist for DSM-5, and Life Events Checklist. Independent t tests compared symptom severity. Logistic regression models estimated odds ratios for probable PTSD and CPTSD. Diagnostic concordance was assessed using Holley and Guilford's G index. Parents of autistic children had significantly higher probable parenting-related PTSD and CPTSD rates than parents of neurotypical children. In Denmark, 6.2% met probable DSM-5 text revision PTSD criteria (vs. 2.0%), and 3.6% met International Classification of Diseases-11 CPTSD criteria (vs. 0.9%). In Australia, 16.0% met DSM-5 text revision PTSD criteria (vs. 4.3%), and 11.8% met International Classification of Diseases-11 CPTSD criteria (vs. 2.6%). Cross-country differences should be interpreted cautiously due to differing recruitment methods. Diagnostic concordance was excellent in Denmark (G = .87) and good in Australia (G = .75). Parents of autistic children in Denmark and Australia exhibit significantly higher rates of parenting-related PTSD and CPTSD compared to neurotypical parents, with strong diagnostic concordance across systems. Further research is needed to identify trauma-related outcomes in this population and clarify contributing risk and protective factors. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

There has been limited research into what helps to promote autistic children's quality of life. This qualitative study, co-produced with autistic people, aimed to identify, from multiple perspectives, what helps autistic children to live a 'good life'. We conducted semi-structured interviews with autistic adults (n = 28) and parents of autistic children (n = 29). Using reflexive thematic analysis, we identified four themes: Being accepted by others in a way that allows the child to be themselves; Finding 'the things that light [the child]'; Having a sense of control over their own life and Physical/sensory environments matter. All themes were common to both autistic adults and parents of autistic children, with the exception of one sub-theme, which was predominantly driven by autistic adults' responses. These findings highlight potential pathways to support autistic children's quality of life now and into the future.Lay AbstractThere hasn't been much research about what helps autistic children to live a 'good life' or to have a good quality of life. This makes it difficult to know how to help autistic children to do so. In this study, we asked autistic adults and parents of autistic children what they thought helped autistic children to live a 'good life'. They mentioned four important areas. These were (a) autistic children being accepted as their real or true self, (b) autistic children finding the things that they enjoy and that energise them, (c) autistic children having a sense of control in their life and (d) physical environments that suit autistic children's sensory needs. These are things that can be changed in the autistic child's environment to support the autistic child in living a good life.

Approximately 50% of autistic children experience high anxiety. Intolerance of uncertainty (tendency to react negatively to uncertain situations) is a key mechanism in the development and maintenance of anxiety. This study aimed to provide a descriptive, thematic analysis of the impact on uncertainty on the daily lives of autistic children and their families. Semi-structured interviews were conducted with parents and caregivers of 53 autistic children (including 3 dyads) aged 6–16 years to elicit examples of uncertain situations that the children found challenging and to explore the impact of these situations on family life. Thematic analysis revealed five overarching themes: child’s reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. These findings provide a crucial understanding into the range of uncertain situations autistic children with anxiety experience. Anxiety-reduction approaches based on increasing tolerance to everyday uncertain situations could help improve well-being, quality of life and participation for autistic children and their families.Lay abstractAnxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child’s reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children’s ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families.

Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.

Stigmatization among parents of autism spectrum disorder children in Riyadh, Saudi Arabia.

Purpose: Outdoor physical activities (OPA) can not only improve the physical fitness and health of autistic preschool children, but also provide an indispensable opportunity for their social learning and interaction. However, parents’ intentions of providing OPA for their autistic children are complex due to reasons such as potential risk. Theory of Planned Behavior（TPB）has conceptualized that attitude (AT), subjective norms (SN), and perceived behavioral control (PBC) are influential factors of behavioral intention. Perceived risk and perceived usefulness are suggested to associate with one’s intention, therefore, the purpose of this study was to test an extended TPB model on parent’s intention of providing OPA among parents of autistic children. Methods: This was a cross-sectional study. A convenient sample of parents of 301 autistic preschoolers (mean age = 3.45±1.10 years old; boys=219; girls = 68) were recruited. Parents reported to questionnaires assessing their AT, SN, PBC, and intention (Ajzen, 1991; Yang, 2017) as well as perceived risk and perceived usefulness of providing OPA for their autistic children (Davis et al., 1989; Yu, 2016). Structural Equation Modeling (SEM) using SmartPLS software was employed to investigate the extended TPB model by including perceived risk and perceived usefulness (exogenous variables) with AT, SN, PBC to synergistically predict intention (endogenous variable). Results: The results revealed that autistic preschooler parents’ perceived usefulness (p < 0.01, f2= 0.087）had a significant and positive prediction on intention in addition to the significant contributions from AT (p < 0.01, f2=0.053), SN (p < 0.01, f2=0.047), and PBC (p < 0.01, f2=0.060). However, perceived risk (p < 0.01, f2= 0.070) had a significant and negative prediction on intention. Besides, perceived usefulness (p < 0.01, f2= 0.108) was positively correlated with AT and AT partially mediated the association between perceived usefulness and intention (Variance Accounted For= 23.2%). In general, perceived usefulness, PBC, AT, SN and perceived risk had a high explanatory power to intention (R2=0.536). Conclusion: The extended TPB model demonstrated to be a useful framework to explain autistic preschooler parents’ intention of providing OPA for their autistic children. Perceived risk and perceived usefulness are critical to parents’ intention in addition to PBC, AT and SN, which should also be the targets of intervention in practice. This finding also suggests practitioners may help parents’ understand the usefulness of OPA to help autistic preschoolers’ parents form positive attitude of OPA, then boosting their intention to engage their autistic children in OPA.

The purpose of the article is to substantiate and describe the content of the training of competent interaction between specialists and parents of autistic children and training of competent parenting by the autistic children, and also - the prospect of the research of phenomenon of parenting for children with autism. Despite the annual increase in the number of people with autism, the problem of support of children with autism in Ukraine and in the world has not received sufficient scientific study, in particular - little is known about the methods of effective influence on the level of competence of parents of children and adolescents with autism and on optimization of social communication of parents on micro- and the macro level. Parents raising children with disabilities (in the conditions of transformation of parental functions), face additional problems in comparison with parents of standard-type children. Parental competence, in its modern sense, is characterized by the ability of the parent to perform parental functions in such a way that it promotes the positive direction of the physical, mental, emotional, speech, communicative, etc. of the child, under conditions the parent has sufficient quality of his own life. The main question of the research: what kind of parenting behavior and which parent's socio-psychological characteristics provide the positive direction for the development of a child with autism, and how the social environment at the micro-level (family, teachers, friends, acquaintances) and at the macro-level (civil society organizations, state organizations and services, public authorities) of social communication affect this ability. The article describes the system of support in educational institutions for children with autism and their parents abroad (USA, Israel), provides guidance to the administration of educational institutions on the competent relationship with parents of children with autism. Training of competent interaction of specialists with parents of autistic children and competent parenting for autistic children are described.

High parenting stress is associated with diminished quality of life in parents and more problem behaviors in autistic children. Mindfulness-based interventions have demonstrated efficacy in mitigating parenting stress. Psychological flexibility and resilience have been recognized as protective factors against psychological distress. However, the extent to which psychological flexibility and resilience mediate the effect of mindfulness on parenting stress among parents of autistic children remains unclear. This cross-sectional study examined the mediating roles of psychological flexibility and resilience in the relationship between mindfulness and parenting stress. We recruited a convenience sample of 181 Chinese parents of autistic children from Shenzhen Longhua Maternity and Child Healthcare Hospital in Shenzhen, China. This study assessed characteristics, parents' mindfulness, psychological flexibility, resilience, and parenting stress. Results indicated that parents experienced considerable parenting stress. Correlation analysis found that higher mindfulness, psychological flexibility, and resilience were associated with lower parenting stress. After controlling for children's age, gender, core symptom severity, parents' age, gender, marital status, and education levels, psychological flexibility and resilience completely mediated the relationship between mindfulness and parenting stress. These findings suggest that multicomponent psychological interventions may enhance the mental health of parents of children with autism, warranting further investigation.Lay AbstractRaising a child with autism spectrum disorder can be very stressful for parents, and this stress can lead to serious problems, like diminished quality of life in parents and more challenging behaviors in autistic children. But there's something called mindfulness that can help parents feel less stressed. Mindfulness is like training your mind to stay calm and focused. It's like learning to take a deep breath and find calm in a busy day. Our study in China investigated 181 parents of children with autism from Shenzhen Longhua Maternity and Child Healthcare Hospital in Shenzhen, China. We wanted to see if two things-being able to bounce back from hard times (resilience) and being flexible in how you think and act (psychological flexibility)-help mindfulness work its magic in easing stress. We found that more mindful parents also felt less stressed. Moreover, having psychological flexibility and resilience seemed to be the reason why mindfulness was so helpful. After controlling for covariates including children's age, gender, core symptom severity, parents' age, gender, marital status, occupational status, and education levels, the effects of mindfulness on stress still existed. This tells us that programs that teach mindfulness, along with how to build resilience and be more flexible in thinking, could make a difference for parents of children with autism. It could help them feel less stressed and more at peace.

Successful partnerships between families and schools can substantially improve children's success in and out of school. Yet parents of autistic children often report considerable challenges with their children's education. Almost no research, however, has examined autistic parents' own experiences. We, therefore, sought the views and experiences of autistic parents' interactions with schools for their autistic children. We conducted semi-structured interviews with 31 autistic mothers of autistic children engaged in education in Australia. We analysed the data using reflexive thematic analysis. Autistic mothers repeatedly expressed feeling like they were in a 'war zone', fighting ongoing battles to gain the necessary support for their autistic child and were 'sick of being [viewed as] the problem'. They also felt that their expertise as parents - and experiential expertise as autistic parents - was often overlooked or ignored. All of this had negative effects on their and their children's mental health. Despite these negative experiences, autistic mothers who had experienced positive interactions with schools highlighted the importance of mutual respect in establishing and maintaining successful school partnerships and how their own determination and self-advocacy helped to foster these relationships. This research sheds light on the critical ingredients of effective home-school partnerships for autistic families.Lay abstractGood relationships between families and schools make a difference to children's learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children's mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.

BackgroundEvidence suggests that parents/carers of autistic children have lower subjective physical and mental health which in turn can affect their overall quality of life (QoL). The aim of this study was to determine the relationship between the behavioural and emotional profile of autistic preschool children, parental stress, and an Autism (ASD) specific measure of the parental QoL using a sociodemographic lens.MethodsA secondary analysis of the data collected from parents of autistic children from six Autism Specific Early Learning and Care Centres (ASELCCs) across six states in Australia. The standardised Quality of Life in Autism scale (QoLA) scale was used as the primary outcome to ascertain the QoL of parents/carers. Primary exposure included child’s autistic traits as well as cognitive, adaptive, and behavioural profile; parental stress; and key sociodemographic factors. Multivariable linear regression analyses were used to determine whether the sociodemographic factors and child’s autistic traits were significantly associated with parental QoL whilst adjusting for key sociodemographic factors (for the latter).ResultsAmong a sample of 518 participants, findings of the regression analyses showed that sibling’s ASD diagnosis and carer’s disability status were negatively associated with parental QoL (Part A) whereas only sibling’s ASD diagnosis was negatively associated with parental QoL (Part B). Additionally, higher parental stress levels, child’s internalising, externalising, repetitive behaviours, and communication difficulties were negatively associated with both parental QoL subscales whereas greater adaptive functioning among autistic children was positively linked to better parental QoL.ConclusionFindings indicate that a child’s autism specific traits as reported by parents have significant impacts on their QoL. Hence, targeted supports in these areas for families could be expected to have benefits not only for the child’s outcomes but also for parental QoL.

Parents of autistic children often experience high levels of parenting stress, which can have negative mental and physical effects on both the parent and child. This study tested the efficacy of mindfulness-based stress reduction in reducing parenting stress in parents of preschool-aged autistic children compared to a psychoeducation and support intervention. We assessed parenting stress before and after the interventions and at 6- and 12-month follow-up. Both interventions significantly decreased parenting stress, but mindfulness-based stress reduction reduced stress more than did psychoeducation and support, with the strongest effect observed 1 year later. This suggests that the stress-reducing benefits of mindfulness-based stress reduction persist and may increase over time.

Research has examined teacher attitudes, knowledge, and stigma towards inclusion of autistic children in mainstream schools. Less focus has been given to these beliefs among parents. This is problematic as parents are important in the implementation of inclusion and fostering a positive school environment. The current study examined differences in autism attitudes, knowledge, stigma, and inclusive education attitudes (core perspective; expected outcomes; classroom practices) among parents with and without an autistic child; The study also investigated whether autism knowledge, attitudes and stigma predicted inclusion attitudes. 185 parents in the UK (52% had an autistic child) completed questionnaires measuring these variables. Parents of an autistic child had significantly higher core perspective inclusive attitudes than parents without an autistic child. However, this group also reported more beliefs that parents of autistic children are stigmatised. For all parents, core perspective inclusive attitudes were predicted by autism attitudes and stigma towards parents of autistic children. Predictors of expected outcomes and classroom practices inclusive attitudes differed between groups. Findings highlight the need for parental attitude research to be disability-specific and consider different aspects of inclusive attitudes. Parent education to enhance inclusive attitudes should be tailored for distinct parent groups and contact interventions should be considered.

IntroductionChildren with autism spectrum disorder often face nutrition-related challenges, such as food selectivity, gastrointestinal issues, overweight and obesity, and inadequate nutrient intake. However, the role of routine nutrition-related screening or care by interdisciplinary health professionals is not well understood. This study aimed to compare the beliefs of health professionals with those of parents of autistic children regarding high-priority nutrition-related challenges, barriers and facilitators to care, and desired education and resources related to nutrition for autistic children.ParticipantsInterdisciplinary health professionals (n = 25) (i.e., pediatricians, occupational therapists, speech-language pathologists, board certified behavior analysts, registered dietitians) and parents of autistic children (n = 22).MethodsThe study used semi-structured phone interviews, which were recorded, transcribed, verified, and double-coded using the Framework Method.ResultsThematic analysis of transcripts revealed that while health professionals and parents of autistic children shared some perspectives on nutrition-related challenges and care, they also had distinct viewpoints. Parents emphasized the importance of addressing food selectivity, behavioral eating challenges, sensory issues, and sleep disturbances affecting appetite. Both groups acknowledged the need for tailored support, access to an interdisciplinary care team, and reasonable expectations. Some health professionals perceived parents as lacking motivation or the ability to make changes. In contrast, many parents felt that health professionals lacked the knowledge and motivation to take nutrition or growth concerns seriously. Health professionals acknowledged that their lack of knowledge or capacity to provide nutrition education or referrals was a common barrier to care, particularly given limited community resources.DiscussionHealth professionals who serve autistic children are motivated to address nutrition-related challenges but lack resources related to nutrition. To promote better health outcomes for autistic children, professionals should identify and support parent motivations around nutrition-related care. Both groups expressed interest in accessing autism-specific resources for education, referral, and screening guidance. Future research could explore the development of healthcare training models that improve the competency of health professionals in providing nutrition care and referral for autistic children.