Autism Parents Research Articles

Exploring the Potential Impact of Training on Short-Term Quality of Life and Stress of Parents of Children with Autism: The Integrative Parents' Autism Training Module.

Parents of autistic children experience high levels of parental stress and low quality of life related to the demanding child caring burden they experience. Parent education and training programs are acknowledged to improve parental well-being and reduce parenting stress. In the framework of the Erasmus+ Integrative Autism Parents Training Project (IPAT), we developed the IPAT Training Module based on parents' expressed needs, in order to improve parental quality of life (QoL) and decrease their perceived stress. Sixty-two parents from four countries participated in the IPAT Module Training activity. We used WHOQOL-BREF and Perceived Stress Scale (PSS-10 version) for QoL and stress, respectively, before and after training and a study-specific questionnaire to assess participants' satisfaction. Parents' QoL improved significantly in the environment domain and specific items, while stress levels remained unmodified. Training appeared more advantageous for parents with lower initial QoL and those whose child had been enrolled in a special education program for an extended duration. Parents were quite satisfied, in particular those with lower initial social relationships QoL. Larger studies including a control group are necessary to support preliminary evidence provided by this study, identify additional effect moderators, and disentangle the contribution of different components of the training.

Alexithymia in Parents of Children with Neurodevelopmental Disorder: A Cross-Sectional Comparative Study

Abstract Background: Emotional insight is the distinctive core factor of human characteristics and it is so basic and foundational for every aspect of human understanding, communication, and daily care of life. Recent studies have identified that children with neurodevelopmental disorders (NDD) and their relatives have difficulties in identifying and recognizing their own emotions. Objectives: The present study was aimed to investigate the level and comparison of alexithymia scores in parent of autism, attention deficit hyperactivity disorder (ADHD), and typically developing children (TDC). Study Design: A cross-sectional comparative study. Methods: One hundred and fifty (N = 150) parents were recruited into the study which includes parents of 50 autism, parents of 50 ADHD, and parents of 50 TDC by means of convenience sampling method. Toronto Alexithymia Scale-20 was used to measure alexithymia in parents of NDDs. Results: The study revealed that there was a statistically significant difference in Alexithymia scores between parents of children diagnosed with autism spectrum disorder (ASD), attentiondeficit hyperactivity Disorder (ADHD), and typically developing children (One-Way ANOVA: F = 133.497, P < 0.001). Parents of children with ASD scored significantly higher on Alexithymia (66.26±4.575, t = 6.05172, 95% CI: 64.96 to 67.56) than parents of children with ADHD (59.02±7.116, t = 8.8296, 95% CI: 57.00 to 61.04) and typically developing children (49.36±3.036, 95% CI: 48.50 to 50.22). No significant association was found in Alexithymia scores with respect to gender in children against their parents (P = 0.267). Similarly, no significant association was found in Alexithymia scores with respect to demographic variables of child’s age, child’s gender, and parental age (P = 0.064). Conclusion: The results suggest that alexithymia has higher impacts on parents of autism and there is a growing need of necessary focus on alexithymia an important issue in parents of children with NDDs. Thus, it is very essential to treat alexithymia with special focus.

Cultural adaptation of ACT to support caregivers of autistic Latino children: A pilot study

Providers working with families of autistic children have a shared responsibility to ensure access to culturally responsive and linguistically appropriate services for Latino caregivers. Acceptance and Commitment Therapy (ACT) is a promising intervention for Autism parents. However, research on ACT for Latino caregivers is absent. This small pilot study indicated that a brief, group-based, culturally adapted ACT protocol may enhance the wellbeing of Latino mothers. The 2-day intervention was associated with significant reductions in anxiety, depression and psychological inflexibility for all parents, with medium to large effect sizes. Methodological factors significantly limit conclusions, however, the study offers the foundation for a program of research centered on the promotion of thriving in Latino families with autistic children, and how to best integrate guidelines for culturally adapted practice with CBS approaches. The study also highlights the importance of centering social justice as a key component of what it means to be effective contextual behavioral scientists and the need for systemic action to address current barriers to care for Latino families.

Divided Communities and Absent Voices: The Search for Autistic BIPOC Parent Blogs

Both autistic adults and families of autistic children rely heavily on blogs and other digital platforms to create community and gain experiential knowledge about autism, but research on autism blogs has failed to distinguish between the perspectives of autistic adults and neurotypical parent bloggers. Furthermore, intersections in the experiences of BIPOC autistics are rarely examined. Using a content analysis with a feminist Critical Disability Studies lens, I explore six autism parent blogs from diverse demographics: a white neurotypical father, a white autistic mother in an interracial relationship, a white neurotypical mother, an Indigenous autistic trans father, a Black autistic nonbinary mother, and a Black neurotypical mother. I examine the attitudes of these bloggers to get a sampling of their opinions on autism, how they parent autistic children, and how their social location, specifically race, impacts their experiences. More intersectional research needs to be done to boost the perspectives of BIPOC autistics and the expertise of autistic parents.

A culturally grounded autism parent training program with Black parents

Parent training programs have been well-studied in Autism Spectrum Disorders and shown to increase a parent's feeling of empowerment, advocacy skills, and treatment enrollment for their child. The majority of parent training interventions have been developed without considering the unique needs of under-represented communities, such as the Black community. Black children with autism are not only misdiagnosed or not diagnosed at all, but are not accessing services equally compared to their White peers. There is an urgent need for culturally adapted interventions in order to decrease the disparity gap. The Color of Autism Foundation developed and ran a parent training program for Black parents of children with autism. The program was grounded in two key features: (1) creating a circle of support for parents to connect and heal from ongoing and historical racial trauma and (2) using parents of Black children with autism as the main facilitators. We believe this increased parent's ability to engage in the educational aspects of the training. Overall, parents reported high levels of satisfaction with the training were highly engaged (attended an average of five of six sessions) and reported high levels of empowerment. Parents also reported continued mistrust in the medical and research community and a need for more Black providers. Further work should examine the relationship of the parent and provider in autism treatment and study the impact of circles of healing for Black families.

Real-World Executive Functioning and Subclinical Autism Traits in Autism Parents, Other Disability Parents, and Non-Clinical Undergraduates

Real-World Executive Functioning and Subclinical Autism Traits in Autism Parents, Other Disability Parents, and Non-Clinical Undergraduates

Emotion transformation: a grounded theory for uncovering painful triggers and repairing relational connection for parents of autistic children

PurposeIt is often voiced that parents of autistic children are the expert of their child, whereas parenting programmes target them as effective mediators for change. This paper aims to explore this unchallenged heuristic to develop an understanding of both emotional and relational needs of parents through trainers’ experiences of delivering emotion-focused and autism parent training.Design/methodology/approachThis qualitative study used a constructivist approach of grounded theory to gain an in-depth understanding of trainers’ experiences from their encounters when delivering parent training. Six expert trainers were interviewed, and a two-phased coding of ground theory and an adapted thematic analysis was used.FindingsAn overarching theme emerged: emotion transformation from painful triggers, to enhanced attunement and relational repair. Four main themes containing 13 subthemes were identified. The interaction of these themes and subthemes are presented in a three-phase process model. Phase 1: uncovering painful emotions from a shared journey contained one theme: parent painful triggers. Phase 2: uncovering interpersonal rupture cycle contained one theme: relational rupture cycle within non-synchrony of attunement. Phase 3: parent–child relational repair contained two themes: repairing attachment bonds and therapist’s prizing stance.Social implicationsThe authors challenge the parent as expert heuristic and propose that not all parents feel expert in neurotypical-neurodivergent intersubjectivity. The authors are curious to see whether trainers/therapists can guide parents through unprocessed emotions and non-synchrony of attunement to promote healing and relational repair, which requires further investigation.Originality/valueTo the best of the authors’ knowledge, this is the first emotion-transformation process model grounded in humanistic principles of relational acceptance and emotion theory. The authors propose that a focus on process rather than outcome is more likely to result in higher parenting self-efficacy.

The Effectiveness of Brushing Teeth Video to Improve Autism Parent’s Skill in Brushing Teeth at SLB 2 Provinsi Jambi Year 2020

Childrens with Autism have difficulty to clean their oral cavity because less of ability in motor skills. Case reports show that the average autistic child has dental caries and periodontal disease due to the inability to brush their teeth properly. Autistic children spend a lot of time with their families so that the role of families, especially parents, is very important in the development of children with autism. This study aims to determine the effectiveness of brush teeth video counseling to improve brushing teeth skill in parents of autistic children at SLB 2 Provinsi Jambi. Study design is a quasi experimental study. The independent variable was the video counsellling of brushing teeth and the dependent variable was the parent’s ability of brushing teeth. The Sample in this study were parents of autistic children who met the inclusion and exclusion criteria. The average age of the respondents was 41 years (CI: 38 - 44). Wilcoxon test showed p value 0, 0001 (0.05) means significant difference of brushing skills between treatment group and control group. Mann Whitney showed p value 0.0042 (0.05), means significant difference between before and after intervention in the treatment group. Providing education on brushing skills to children with autism cannot be done instantly, it is necessary for the role of parents in teaching tooth brushing skills to be carried out continuously until children can brush their teeth independently. There is an improvement in brushing skills in parents of autistic children through counseling using videos on how to brush teeth.

Preventing the Next Pandemic and Tackling Antiscience: An Interview with Peter Hotez

This interview was conducted by Atiya Henry, Commissioning Editor of Future Microbiology. Peter JHotez, MD, PhD is Dean of the National School of Tropical Medicine and Professor of Pediatrics and Molecular Virology & Microbiology at Baylor College of Medicine. He is an internationally recognized physician-scientist in neglected tropical diseases and vaccine development. As head of the Texas Children's Center for Vaccine Development, he leads a team and product development partnership for developing new vaccines for hookworm infection, schistosomiasis, leishmaniasis, Chagas diseaseand SARS/MERS/SARS-2 coronavirus. DrHotez has authored more than 500 original papers and is the author of four single-author books. Most recently as both a vaccine scientist and autism parent, he has led national efforts to defend vaccines and to serve as an ardent champion of vaccines going up against a growing national 'antivax' threat.

Exercise is a Life-Changer for Those with Autism

Apply It! • Make a profound impact. Because of limited resources, most school systems are leaving those with autism wandering and wondering in physical education classes. This is a squandered opportunity because autism parents have rated exercise as the no. 1 treatment as it has been shown to extend beyond the health-related benefits. Those with autism need to be able to access fitness centers and trainers to benefit from exercise programming. • Understanding autism and exercise. Teaching exercise to those with autism is 75% understanding autism and 25% understanding exercise. This community learns differently and to create successful exercise programs requires embedding evidence-based teaching practices, structured routines, and setting individualized goals. The goal may simply start with just being in the facility for 30 minutes.

Detection of Early Warning Signs in Autism Spectrum Disorders: A Systematic Review

Due to the exponential increase of autism spectrum disorders’ prevalence in Western countries, it is necessary to improve early detection and intervention to enhance developmental milestones. This systematic review identified the most effective screening instrument, which can be used at an early age and which identifies the maximum number of autism cases. We identified several instruments with adequate predictive properties—the Autism Parent Screen for Infants (APSI), Battelle Development Inventory, second edition (BDI-2); Brief Infant-Toddler Social and Emotional Assessment (BITSEA); First Year Inventory (FYI); Infant-Toddler Checklist/Communication and Symbolic Behavior Scales Developmental Profile (ITC/CSBS-DP); Program of Research and Studies on AUTISM (PREAUT-Grid); Checklist for Early Signs of Developmental Disorders (CESDD); Social Attention and Communication Study (SACS); and the Screening Tool for Autism in Toddlers and Young Children (STAT)—that can be applied from 12 months of age in Western countries. The ITC/CSBS-DP has been proposed for universal screening from 12 months of age onwards, complemented by the Modified Checklist for Autism in Toddlers, Revised/Revised with Follow-Up (M-CHAT-R/F), which can be used from 15 months of age onwards. This strategy could improve early detection in at-risk children within the current health system, thus allowing for early intervention.

Parental perception of oral health-related quality of life in children with autism. An observational study.

Background:Autism is reportedly the most severe neuropsychiatric disorder affecting children. Autistic subjects can be characterized by impairments in social interactive behavior along with restricted interests and quite frequently, are seen exhibiting repetitive behavior patterns in stereotyped manner. The inability to perform routine tasks can widely impact the oral health and also, the constant care and sense of helplessness might drastically affect quality of life.Aim:The aim of the study was to assess the oral health status and perceptions regarding an autistic child's oral health among parents.Materials and Methods:Parental perception regarding the quality of life among the afflicted autistic children was done using a self-assessment questionnaire that included eight questions which were replied to in an affirmation or negative answer. 300 parents of autism affected children formed the study participants. Recorded responses were evaluated and percentage of each response was derived. Oral health status was measured by determination of dental caries prevalence and OHI-S index using chair light illumination, mouth mirror, diagnostic probe and a standard WHO periodontal probe. For statistical analysis, the calculations were performed by using the paired t test. Statistical significance, which was fixed at P < 0.05, which is statistically significant.Results:Approximately 18.33% of parents showed were aware that oral health can influence general health; 15% did have exhibit awareness. 15% of parents did not consider that primary teeth were important; 59.1% visited any dentist only when suffering from pain; 5% went for an annual dental examination; 15% and 24.6% parents visited dental practitioners at intervals of 3 and 6 months, respectively. 30%, 25% and 51.66% parents considered obtaining consultation and getting treatment from pediatric dentist; general dentist and general physician. 41.6% parents had taken their children for restorations. 52% reported constant stress whereas 48% reported with constant distressed emotions. No significant difference was determined between the parameters. 75% of autistic children suffered from dental caries whereas oral hygiene scores demonstrated high mean value of 4.Conclusion:Autism is a severely distressing condition wherein oral health along with general physical health is affected. Since parents are directly involved in upbringing of these individuals, they also subsequently show a reduction in quality of life.

Perception of Autism Spectrum Disorder Children by Envisaging Emotions from the Facial Images

Image processing is a rapidly growing technology and is one among the thrust areas of research in Medical Fields, various Engineering disciplines, life Sciences and Scientific applications. Many technical applications have already adopted image processing and it plays a key role in predicting unknown or hidden facts easily and efficiently. Facial image processing is an innovative application of image processing and is being widely used in many applications successfully. Some of the applications are used for person identification, identifying authorized persons, identifying criminals and so on. As we all know that person’s emotion shows personality &amp; behavior, moods where he or she expresses feelings by emotions maximum on face only. Facial expression can also be used in various fields like emotion recognition, market analysis, prediction neurological disorder percentage, psychological problems and so on. So, it has become an emerging research area to study. Neurological disorder is a more complicated disease because it affects both physical body and mental body. In this paper a new methodology is proposed using optimized deep learning methods to predict ASD in children of age 1 to 10 years. Proposed model performance is tested on ASD children and normal children facial image dataset collected from Kaggle datasets and also tested on dataset collected from autism parents’ face book group. Convolutional Neural Networks (CNN) is applied on extracted face landmarks using optimization techniques, dropout, batch normalization and parameter updating. Most significant six types of emotions are considered for analysis in predicting ASD children accurately.

Music therapy as social skill intervention for children with comorbid ASD and ID: study protocol for a randomized controlled trial

BackgroundAutism spectrum disorder (ASD) is a developmental impairment characterized by persistent deficits in social communication and interactions, and over half of children with ASD possess below average intellectual ability (IQ < 85). The social development and response to social skill interventions among children with ASD and comorbid intellectual disability (ID) is not well understood. Music therapy is a systematic process of intervention, wherein a therapist may help clients promote their social skills by using musical experience. The proposed study will address limited research evidence on music therapy as an intervention for social functioning in children with ASD with mild to borderline ID.MethodA randomized controlled trial (RCT) with two parallel groups of 40 children each (1:1 allocation ratio) is planned. Participants will receive 45 min of music therapy or non-musical intervention targeting social skills once a week for 12 weeks. Primary outcome measures will be independent ratings on the Childhood Autism Rating Scale and parent ratings on the Social Responsiveness Scale-2. Linear mixed-effects models for these two outcome measures will be created for data collected at 2-week pre-intervention, 2-week post-intervention, and 4-month post-intervention sessions. In-session behaviors at the first and last intervention will be videotaped and coded offline and compared. Pretreatment neural response of quantitative electroencephalograms (qEEG) to social scenes will be used to predict the outcomes of musical and non-musical social skill interventions, whereas qEEG responses to music will be used to predict the effectiveness of musical social skill intervention.DiscussionIf neural markers of social skill development are found, then the long-term goal is to develop individualized intervention based on pre-treatment markers to maximize treatment efficacy. The proposed study’s results may also suggest directions to development and provision of music therapy services in Hong Kong.Trial registrationClinicalTrials.gov (NCT04557488). Registered September 21, 2020.

Factors Influencing Decisions About Prenatal Genetic Testing for Autism Among Mothers of Children with Autism Spectrum Disorders

Prenatal genetic testing (PGT) for autism spectrum disorders (ASD) is clinically available in the USA; however, PGT-for-autism is controversial in actual clinical practices. This study investigated the association between psychosocial determinants and the intention to undergo PGT among mothers of children with autism. Questionnaires were distributed through electric recruitment letters sent to the major local and regional autism parent groups and organizations. Also, paper-and-pencil-based surveys were administered in two local school settings. The final sample consisted of 184 mothers with an average age of 37.7 years old. The majority was Caucasian (74.5%) and most (85.4%) had attained “Some college degree,” “Bachelor’s degree,” or “Graduate degree.” Logistic regression was used to identify factors associated with mothers’ intention to undergo PGT-for-autism, controlling social-demographic variables (e.g., age race/ethnicity, income level). Results showed that “opinion of a healthcare professional,” “desire to help with autism research,” and “accuracy of the test results” were significantly associated with mothers’ intention to undergo PGT-for-autism (p < 0.05 for all). The findings highlight the important role of health professionals in helping mothers understand PGT-for-autism, making relevant genetic testing recommendations and assisting mothers to make informed decisions regarding PGT-for-autism.

Community-engaged process to adapt evidence-based programs for parents of children with autism spectrum disorder

The purpose of this paper is to describe a community-engaged evidence-based program (EBP) adaptation process informed by existing frameworks that incorporates program theory and recommendations from professionals and members of the target population, or parents of children with autism spectrum disorder (ASD). To inform adaptation, we conducted qualitative interviews, recorded detailed process notes, convened an implementation team, and completed a pilot study of the adapted program. We present a five-phase, systematic adaptation process that resulted in Autism Parent Navigators, a 6-week in-home coparenting program delivered by peer support parents to parents of young children recently diagnosed with ASD. The adaptation process highlighted could be used to adapt other EBPs for ASD. Future research on adaptation processes used in community contexts is imperative to maximize the potential for EBPs to improve well-being for children with ASD and their parents.

Screening for Behavioral Signs of Autism Spectrum Disorder in 9-Month-Old Infant Siblings.

Despite considerable progress in characterizing the early signs of autism spectrum disorder (ASD), more remains to be learned about how symptoms emerge in the first year of life. Parents with a new baby who already had at least one biological child diagnosed with ASD (high-risk) or no family history of ASD (low-risk) completed two measures when their baby was 9months of age, the Autism Parent Screen for Infants (APSI) questionnaire and the interview-based Parent Concerns Form. Children underwent a blinded independent diagnostic assessment for ASD at age 3years. Total scores on the APSI and the Parent Concerns Form were both able to independently differentiate high-risk children who were later diagnosed with ASD from other high-risk and low-risk children who were not. Using logistic regression, we found that the total score on the APSI predicted ASD outcomes at age 3 with 70% accuracy, but the Parent Concerns Form did not contribute any unique variance when the APSI was already in the model. The results suggest that the APSI identifies early features predictive of ASD in high-risk infants and can be used to flag them for targeted follow-up and screening.

58.4 Autism Parents in Action (A-Pact): A Parent Advocacy Program From Pakistan

By the end of this session, participants will be able to discuss the following: 1) the challenges of providing evidence-based clinical services in low-resource settings; and 2) strategies to enhance the role of parents and families in advocacy and treatment application for children with ASD.

Letter to the Editor: An Autism Parent's Response to Papatola and Lustig's Paper on Navigating a Managed Care Peer Review in Behavior Analysis in Practice.

An autism parent disputes the authors' premise that the role of the BCBA is to "transition treatment to parents." Parents cannot simply "take over" all the advanced degrees, thousands of hours of coursework practicum and exams, or depth and breadth of scientific knowledge required to earn a BCBA any more than we can (or should) "take over" our kids' pediatric care or prescribe their meds. Papatola and Lustig's employer, Cigna Behavioral Health, recently made "transition treatment to parents" a criterion of medical necessity for ABA.

Bugs in the program: can pregnancy drugs and smoking disturb molecular reprogramming of the fetal germline, increasing heritable risk for autism and neurodevelopmental disorders?

In a seeming paradox, the prevalence of autism spectrum disorder (ASD) has surged, while at the same time research has pointed to the strong heritability of this neurodevelopmental pathology. Here an autism research philanthropist suggests a biological phenomenon of exogenously induced ‘gamete disruption’ that could reconcile these seemingly contradictory observations. Mining information from her own family history and that of her fellow autism parents, while also engaging with the scientific community, she proposes that a subset of the autisms may be rooted in a variety of molecular glitches in parental gametes induced by certain acute exposures during the parents’ own fetal or neonatal development. These exposures include but are not limited to synthetic hormone drugs, tobacco, and general anesthesia. Consistent with this hypothesis, animal models have demonstrated adverse neurobehavioral outcomes in grandoffspring of gestating dams exposed to hormone-disrupting compounds, tobacco components, and general anesthesia. A recent epidemiological study showed a link between grandmaternal smoking and risk for ASD in grandoffspring through the maternal line. Given the urgency of the autism crisis, combined with the biological plausibility of this mostly unexplored paradigm, the writer contends that questions of nongenetic inheritance should be a priority in autism research.