Journal of Psychosocial Nursing and Mental Health Services

Youth in Mind 

Autism Spectrum Disorder: The Parental Experience

Kunta Gautam Neupane, MPH, MSN, CPNP

Abstract

In 2018, one in every 59 children was diagnosed in the United States with autism spectrum disorder (ASD). ASD is a developmental disability, which is a biologically based neurodevelopmental disorder that affects a child's social interaction and communication skills. ASD includes repetitive patterns and restrictive behaviors, which could last a lifetime. Limited awareness of disease condition, less effective coping strategies, and inadequate guidance lead to increased stress levels among parents of children with ASD. Parents experience peaks and troughs of social, emotional, and financial challenges as they go through a pre-diagnosis phase, diagnosis phase, and post-diagnosis phase. The shortage of health care providers and fragmentation of care in the health care delivery system delays early diagnosis and management of ASD. Primary care providers along with the U.S. physician workforce for patients with ASD are strongly encouraged to review their practices on early screening and diagnosis and have clearly planned out care for every child with a family-centered approach. [Journal of Psychosocial Nursing and Mental Health Services, x(x), xx–xx.]

Abstract

In 2018, one in every 59 children was diagnosed in the United States with autism spectrum disorder (ASD). ASD is a developmental disability, which is a biologically based neurodevelopmental disorder that affects a child's social interaction and communication skills. ASD includes repetitive patterns and restrictive behaviors, which could last a lifetime. Limited awareness of disease condition, less effective coping strategies, and inadequate guidance lead to increased stress levels among parents of children with ASD. Parents experience peaks and troughs of social, emotional, and financial challenges as they go through a pre-diagnosis phase, diagnosis phase, and post-diagnosis phase. The shortage of health care providers and fragmentation of care in the health care delivery system delays early diagnosis and management of ASD. Primary care providers along with the U.S. physician workforce for patients with ASD are strongly encouraged to review their practices on early screening and diagnosis and have clearly planned out care for every child with a family-centered approach. [Journal of Psychosocial Nursing and Mental Health Services, x(x), xx–xx.]

Addressing psychiatric and psychosocial issues related to children and adolescents

Autism spectrum disorders (ASDs) are chronic conditions or developmental disabilities that are biologically based neurodevelopmental disorders that affect a child's social interaction and communication skills. These disorders are characterized by restrictive, repetitive patterns of behavior and activities that may persist throughout life. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) revised the diagnosis of ASDs to include other pervasive developmental disorders, such as autistic disorders, Asperger syndrome, childhood disintegrative disorders, and pervasive developmental disorder-not otherwise specified (PDD-NOS) (American Psychiatric Association, 2013). The symptoms in ASDs range from very mild with or without minimal cognitive and developmental delays to substantial cognitive and developmental impairments (Chao, Chang, Chin, Li, & Chen, 2018). Environmental and genetic factors that may contribute to ASD are not clearly understood.

For most children, these conditions are chronic and require lifetime management, whereas in some children with early intervention, research evidence suggests that 3% to 25% of children eventually lose the diagnosis of ASD when they are older (DeAngelis, 2019). Thirteen percent of young people were found to be free of ASD symptoms in a large-scale retrospective parent survey (Blumberg et al., 2016). Similarly, 9% of those initially diagnosed with ASD at age 2 were found to be symptom-free at age 19 (Anderson, Liang, & Lord, 2014).

Children with ASD currently receive fragmented care, which affects their health and well-being (Yerramsetti, 2017). Studies on the parental experience of raising a child with ASD are limited. The purpose of the current article is to increase awareness of the issues and challenges faced by parents on getting a diagnosis and managing symptoms of ASD. The current article aims to provide recommendations for future research on how society at large can understand the perception of parents of children with ASD and guide them from early diagnosis to follow-up care.

Literature Review

According to the Autism and Developmental Disabilities Monitoring Network, the overall prevalence of ASD in children age 8 among several communities in the United States has increased from 1 in 150 children during 2000 to 2002, to 1 in 68 children in 2010 to 2012. In 2018, the prevalence of ASD increased to 1 in 59 children. The characteristics of ASD have been seen in the ratio of 4.5 males:1 female over a period of 6 years between 2006 and 2012 (Baio et al., 2018).

The increasing prevalence of ASD has put pressure on the field of autism to generate productive and predictive theories. In the literature, the vaccine hypothesis is the most widely circulated theory, which is thought to be responsible for the sharp increase in the prevalence of ASD. This view has generated enormous debate regarding the possible association between vaccination and the development of ASD. An evidence-based meta-analysis of cohort data concluded there was no causal link between vaccination and ASD (odds ratio [OR] = 0.91; 95% confidence interval [CI] [0.68, 1.20]) or autism (OR = 0.99; 95% CI [0.92, 1.06]). There was no relationship between ASD and the measles/mumps/rubella (MMR) vaccine (OR = 0.84; 95% CI [0.70, 1.01]). Similarly, the case-control data revealed no evidence for increased risk of developing ASD or autism following MMR exposure, when grouped by exposure type (OR = 0.85, 95% CI [0.76, 0.95]; p = 0.01) or condition (OR = 0.90, 95% CI [0.83, 0.98]; p = 0.02). Findings of this meta-analysis support that vaccination does not cause ASD or autism (Taylor, Swerdfeger, & Eslick, 2014).

According to the Centers for Disease Control and Prevention (CDC; n.d.), the prevalence of ASD poses several challenges due to lack of biological diagnostic markers, changing diagnostic criteria, and variation in symptom presentation (Hill, Zuckerman, & Fombonne, 2016). The increased prevalence of ASD resulted from changes in diagnostic criteria of including other pervasive disorders and Asperger syndrome in the autism spectrum. Furthermore, genetic testing is considered an important component in the evaluation and management of children with ASD (Schaefer, 2016). The prevalence of genetic abnormalities in children with ASD is 30% to 40% (Schaefer et al., 2013). The American Academy of Pediatrics (AAP; 2013) recommended genetic testing if children possess risk factors (Moeschler, Shevell, & Committee on Genetics, 2014).

Diagnosis

Studies on the experience of parents receiving their child's diagnosis are limited (Chao et al., 2018). Many parents have expressed dissatisfaction with the diagnostic process (Chamak, Bonniau, Oudaya, & Ehrenberg, 2011; Crane, Chester, Goddard, Henry, & Hill, 2016; Ho, Yi, Griffiths, Chan, & Murray, 2014). A major reason for dissatisfaction is due to lack of available specialized services (Crane et al., 2016). The physician workforce provides care for >1.2 million patients with ASD younger than 21. The American Academy of Child and Adolescent Psychiatry (2016) indicated there were approximately 8,300 child and adolescent psychiatrists in 2016. There were 1,290 pediatric neurologists in 2018 (Gee & Gee, 2018) and 800 developmental-behavioral pediatricians in 2016 (Soares, Baum, & Patel, 2017). This is a ratio of patients to specialists of 115:1, which creates long wait lists for parents to get their child evaluated for ASD.

The long wait list delays the process of obtaining diagnosis and initiation of proper treatment and therapies (Gordon-Lipkin, Foster, & Peacock, 2016). In addition, fragmentation of care and disconnections between the medical system act as barriers to effective care and management of ASD (Brookman-Frazee, Baker-Ericzén, Stadnick, & Taylor, 2012). As a result, families receive different clinical information and treatment plans for their child's comorbidities (Russell & McCloskey, 2016; Zablotsky, Kalb, Freedman, Vasa, & Stuart, 2014).

Signs and Symptoms

Initial signs and symptoms of ASD are present at the early developmental stage, but these symptoms do not become difficult to manage until they involve social and behavioral patterns and the child falls behind in meeting the social, educational, and/or other demands of life. Symptoms of ASD overlap with other psychiatric symptoms. The average age of diagnosis of ASD and PPD-NOS in the United States is 2 years and 11 months. However, the age of diagnosis can vary from 1 year and 2 months to 9 years and 11 months (Adelman & Kubiszyn, 2017). In a study done in Taiwan, the average age initial symptoms were noticed by parents in children was 5.31 years and the mean age at the time of diagnosis was 8.5 years (Chao et al., 2018).

Parental Concerns

Parents of children with ASD face numerous challenges, such as limited awareness of disease condition, limited resources, limited support system, limited health care providers, and limited long-term management and care. Parents of children with ASD experience confusion and difficulty in understanding their child's behavior during the pre-diagnosis phase. Similarly, parents feel the obligation to obtain professional services and anxiety in obtaining a second opinion during the diagnosis phase.

The post-diagnosis period includes acceptance of the diagnosis, further adjustment, and long-term management (Chao et al., 2018). In the process of getting diagnosed, genetic testing in children with ASD is not widely conducted due to lack of awareness, insurance coverage, and transportation (Vande Wydeven, Kwan, Hardan, & Bernstein, 2012). Despite these barriers, parents perceive the importance of genetic testing and have demonstrated an interest in seeking genetic testing services (Narcisa et al., 2013). Seventy-eight percent of parents reported that genetic testing results did not change the treatment modality in their children and 11% of parents reported that genetic testing results changed the clinical management of their child's ASD (Harrington, Emuren, Restaino, & Schrier Vergano, 2018).

Parents reported being emotionally traumatized by their child's diagnosis. Parents also reported being overwhelmed and not knowing how to cope with the situation (Galpin et al., 2018). Parenting a child with ASD can be more stressful than parenting a child without ASD or a child with other developmental conditions (Craig et al., 2016). Maternal stress is related to factors such as severity of symptoms and challenging behaviors (McStay, Dissanayake, Scheeren, Koot, & Begeer, 2014). Limited research has focused on the role of social and professional support that plays in parents' well-being (Vasilopoulou & Nisbet, 2016).

A brief survey was conducted with 139 parents by Galpin et al. (2018) to examine why some families feel supported and others do not and their viewpoints on the support systems they have and what they would wish for. Families were divided into the feeling supported group (n = 16) and the feeling unsupported group (n = 16). The most common type of support families received came from relatives and friends. Parents who feel unsupported did not receive support from their partners, local support groups, school staff, and other professionals. Parents belonging to the feeling unsupported group wished for more understanding of their child's communication and behavior. Parents also felt the need to receive respite and parenting advice.

Research shows that parents receive support from other parents, which proved to be significantly helpful. Limited social support has been linked to increased stress level and decreased parenting efficacy (Barker et al., 2011). Lack of external support can have a significant impact on parents' well-being. Parents experience anxiety, insecurity related to their child's future, and an increased level of stress, which could lead to an increase in isolation and further reduction of social support (Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). Therefore, it is important to understand parents' perspectives of the disease process of their children and support systems to improve parental and family well-being.

Parents must face everyday challenges of parenting children with ASD. Parents must cope with their child's unique behavior of food selection, difficulties in self-care, such as toileting and brushing teeth, and disruptions in sleep patterns. Parents also reported a concern of sense of community and togetherness. Parents felt isolated and alienated. Parents have reported a need for respite and self-care, such as doctor's appointments for themselves and other activities. Parents have trouble in transportation services and have higher possibilities of missing out on social activities, such as going to church, and family outings. Furthermore, parents reported a need for constant pressing of the health care system and fighting for services. Therapy and other services are not easily accessible to parents. Some parents reported not having adequate time and support to keep asking for help and fighting for services. Few parents reported that they were told that they would not receive the services they have been waiting for (Chao et al., 2018; Galpin et al., 2018).

Parents reported that their children spend more time at school. Parents believe there is a limited collaboration with schools, which has a negative impact on their children's progress in school. Parents also wished to be in close communication with the school system to help children reach their optimum potential in academics and social personal development. In addition, parents felt the need to have awareness and knowledge regarding ASD (AAP, 2013; Galpin et al., 2018).

Parents have recommended that service providers adopt a family-centered approach. The support they receive does not fit their lives. Parents also believe whole family support is lacking. The financial help from the health council is limited to the child with ASD. Lack of focus on the whole family seems to isolate other family members and does not nurture sibling understanding and relationships. Parents highlighted the need for tailored post-diagnostic long-term management and support targeted toward the family. The best support parents could get is a tool to navigate the system that one has to operate as a parent (Chao et al., 2018; Galpin et al., 2018). Health care providers should schedule follow-up appointments with these families in a few weeks after diagnosis to provide further information on management and formulate a plan of care for the child.

Primary care providers and specialists acknowledge the fragmented health system and report that they have little to offer patients with ASD and their families (Yerramsetti, 2017). The literature reveals that primary care providers have a limited role in the care and management of the ASD population due to insufficient training (Zablotsky et al., 2014). Specialists reported that they have difficulties in managing other comorbidities of the ASD population (Kohane et al., 2012). Health care providers need the knowledge and skills for early identification, diagnosis, and management of children with ASD.

Nursing Implications

Management of ASD needs a comprehensive and coordinated developmental evaluation. Pertinent people in a child's life who can conduct developmental evaluations are parents, teachers, social workers, nurses, primary care physicians, psychologists, and speech-language pathologists. Most parents prefer the faster and easier route in getting the diagnosis so that early intervention can be initiated. Early intervention can have a significant impact on a child's development and may avoid expensive therapies in the future (CDC, 2019). Parents are concerned about their child's future and this could be addressed by providing social and financial support (Chao et al., 2018). Specialized developmental pediatricians use data from the developmental evaluation to make their diagnosis of ASD (AAP, 2013). Primary care for patients with ASD has been recognized by federal policymakers (Interagency Autism Coordinating Committee [IACC], 2017). The primary care team may include health care providers such as physicians, nurse practitioners, and physician assistants. There was a discussion for the need to advance primary care for patients with ASD at the most recent IACC meeting in 2018 (IACC, 2017; Kong, Liu, Chien, Batalden, & Hirsh, 2019).

Future nursing research implications should indicate that primary care providers who serve as home clinics for patients with ASD need to have adequate training and provide effective care to the child with ASD and resources for his/her family. The primary care team needs to provide comprehensive developmental evaluations as early as possible for children who are demonstrating ASD symptoms. Primary care providers should order therapy and behavior services for children suspected to be on the spectrum of autism. Children should not wait to get a diagnosis to start therapies. Families need to be approached as a whole, and support and guidance should be provided by the primary care team. Parents and siblings should have training on coping with their family member with ASD. Teachers who participate in the child's teaching and learning activities should also have formal training regarding needs of children with ASD.

Conclusion

According to the DSM-5, ASD is defined as a neurodevelopmental disorder, which affects social forms of communication and causes repetitive behaviors. A thorough understanding of the spectrum is essential to develop comprehensive care focusing on not only the child with ASD but the entire family. Resources from the CDC will enable providers to communicate effectively with the child with ASD and his/her family and help identify symptoms early and provide therapies.

Service providers, including health care providers, should support parents of children with ASD who have limited spoken communication and intellectual disabilities. Parents need to be guided as early as the time of diagnosis to management and care, which should be provided in a family-centered approach. Health care providers confirm the diagnosis of ASD at which time the child's journey of further development and management begins. Providers need to help the family navigate the process, locate services, and access community groups for further support and guidance. Certification programs made available at the CDC web-site need to be mandatory to primary health care providers for early diagnosis and management. Primary care providers and the entire health care team involved with patients with ASD need to obtain specialized training and education on ASD.

References

  • Adelman, C. R. & Kubiszyn, T. (2017). Factors that affect age of identification of children with an autism spectrum disorder. Journal of Early Intervention, 39(1), 18–32 https://doi.org/10.1177/1053815116675461 doi:10.1177/1053815116675461 [CrossRef]
  • American Academy of Child and Adolescent Psychiatry. (2016). American Academy of Child and Adolescent Psychiatry work-force issue. Retrieved from https://www.aacap.org/AACAP/Resources_for_Primary_Care/Workforce_Issues.aspx
  • American Academy of Pediatrics. (2013). What causes autism spectrum disorder? In Rosenblatt, A. I., Carbone, P. S. & Yu, W. (Eds.), Autism spectrum disorders: What every parent needs to know (pp. 23–38). Elk Grove Village, IL: Author.
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
  • Anderson, D. K., Liang, J. W. & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 55(5), 485–494 https://doi.org/10.1111/jcpp.12178 PMID: doi:10.1111/jcpp.12178 [CrossRef]
  • Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z. & Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Surveillance Summaries, 67(6), 1–23 https://doi.org/10.15585/mmwr.ss6706a1 PMID: doi:10.15585/mmwr.ss6706a1 [CrossRef]29701730
  • Barker, E. T., Hartley, S. L., Seltzer, M. M., Floyd, F. J., Greenberg, J. S. & Orsmond, G. I. (2011). Trajectories of emotional well-being in mothers of adolescents and adults with autism. Developmental Psychology, 47(2), 551–561 https://doi.org/10.1037/a0021268 PMID: doi:10.1037/a0021268 [CrossRef]
  • Blumberg, S. J., Zablotsky, B., Avila, R. M., Colpe, L. J., Pringle, B. A. & Kogan, M. D. (2016). Diagnosis lost: Differences between children who had and who currently have an autism spectrum disorder diagnosis. Autism, 20(7), 783–795 https://doi.org/10.1177/1362361315607724 PMID: doi:10.1177/1362361315607724 [CrossRef]
  • Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N. & Taylor, R. (2012). Parent perspectives on community mental health services for children with autism spectrum disorders. Journal of Child and Family Studies, 21(4), 533–544 https://doi.org/10.1007/s10826-011-9506-8 doi:10.1007/s10826-011-9506-8 [CrossRef]
  • Centers for Disease Control and Prevention. (n.d.). Data on autism: Five facts to know. Retrieved from https://www.cdc.gov/features/new-autism-data/index.html
  • Chamak, B., Bonniau, B., Oudaya, L. & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97 https://doi.org/10.1177/1362361309354756 PMID: doi:10.1177/1362361309354756 [CrossRef]
  • Chao, K.-Y., Chang, H.-L., Chin, W.-C., Li, H.-M. & Chen, S.-H. (2018). How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis. Autism, 22(4), 388–400 https://doi.org/10.1177/1362361316680915 PMID: doi:10.1177/1362361316680915 [CrossRef]
  • Craig, F., Operto, F. F., De Giacomo, A., Margari, L., Frolli, A., Conson, M. & Margari, F. (2016). Parenting stress among parents of children with neurodevelopmental disorders. Psychiatry Research, 242, 121–129 https://doi.org/10.1016/j.psychres.2016.05.016 PMID: doi:10.1016/j.psychres.2016.05.016 [CrossRef]27280521
  • Crane, L., Chester, J. W., Goddard, L., Henry, L. A. & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162 https://doi.org/10.1177/1362361315573636 PMID: doi:10.1177/1362361315573636 [CrossRef]
  • DeAngelis, T. (2019). Losing an autism diagnosis. Retrieved from https://www.apa.org/monitor/2019/04/autism-diagnosis
  • Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L. & Pellicano, E. (2018). ‘The dots just don't join up’: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571–584 https://doi.org/10.1177/1362361316687989 PMID: doi:10.1177/1362361316687989 [CrossRef]
  • Gee, A. L. & Gee, A. (2018). Filling the gap in pediatric neurology. The view from an area without pediatric neurologists. Retrieved from http://practicalneurology.com/pdfs/PN0318_CF7.pdf
  • Gordon-Lipkin, E., Foster, J. & Peacock, G. (2016). Whittling down the wait time: Exploring models to minimize the delay from initial concern to diagnosis and treatment of autism spectrum disorder. Pediatric Clinics of North America, 63(5), 851–859 https://doi.org/10.1016/j.pcl.2016.06.007 PMID: doi:10.1016/j.pcl.2016.06.007 [CrossRef]27565363
  • Harrington, J. W., Emuren, L., Restaino, K. & Schrier Vergano, S. (2018). Parental perception and participation in genetic testing among children with autism spectrum disorders. Clinical Pediatrics, 57(14), 1642–1655 https://doi.org/10.1177/0009922818803398 PMID: doi:10.1177/0009922818803398 [CrossRef]30264578
  • Hill, A. P., Zuckerman, K. & Fombonne, E. (2016). Challenges and options for estimating the prevalence of autism in population surveys. Retrieved from https://pdfs.semanticscholar.org/33c4/328e99103e4fe8bf1a06e8265657b1b60b9e.pdf
  • Ho, H. S., Yi, H., Griffiths, S., Chan, D. F. & Murray, S. (2014). ‘Do it yourself’ in the parent-professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: A qualitative study. Autism, 18(7), 832–844 https://doi.org/10.1177/1362361313508230 PMID: doi:10.1177/1362361313508230 [CrossRef]
  • Interagency Autism Coordinating Committee. (2017). 2016–2017 Interagency Autism Coordinating Committee strategic plan for autism spectrum disorder. Retrieved from https://iacc.hhs.gov/publications/strategic-plan/2017/strategic_plan_2017.pdf
  • Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L. & Churchill, S. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS ONE, 7(4), e33224–e33227 https://doi.org/10.1371/journal.pone.0033224 doi:10.1371/journal.pone.0033224 [CrossRef]22511918
  • Kong, X., Liu, J., Chien, T., Batalden, M. & Hirsh, D. A. (2019). A systematic network of autism primary care services (SYNAPSE): A model of coproduction for the management of autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 1–7 https://doi.org/10.1007/s10803-019-03922-4 PMID:30790194
  • McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M. & Begeer, S. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502–510 https://doi.org/10.1177/1362361313485163 PMID: doi:10.1177/1362361313485163 [CrossRef]
  • Moeschler, J. B. & Shevell, M.Committee on Genetics. (2014). Comprehensive evaluation of the child with intellectual disability or global developmental delays. Pediatrics, 134(3), e903–e918 https://doi.org/10.1542/peds.2014-1839 PMID: doi:10.1542/peds.2014-1839 [CrossRef]25157020
  • Narcisa, V., Discenza, M., Vaccari, E., Rosen-Sheidley, B., Hardan, A. Y. & Couchon, E. (2013). Parental interest in a genetic risk assessment test for autism spectrum disorders. Clinical Pediatrics, 52(2), 139–146 https://doi.org/10.1177/0009922812466583 PMID: doi:10.1177/0009922812466583 [CrossRef]
  • Russell, S. & McCloskey, C. R. (2016). Parent perceptions of care received by children with an autism spectrum disorder. Journal of Pediatric Nursing, 31(1), 21–31 https://doi.org/10.1016/j.pedn.2015.11.002 doi:10.1016/j.pedn.2015.11.002 [CrossRef]26724967
  • Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G. & Benevides, T. W. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism, 15(3), 373–389 https://doi.org/10.1177/1362361310386505 PMID: doi:10.1177/1362361310386505 [CrossRef]21430016
  • Schaefer, G. B. (2016). Clinical genetic aspects of ASD spectrum disorders. International Journal of Molecular Sciences, 17(2), 180 https://doi.org/10.3390/ijms17020180 PMID: doi:10.3390/ijms17020180 [CrossRef]
  • Schaefer, G. B. & Mendelsohn, N. J.Professional Practice and Guidelines Committee. (2013). Clinical genetics evaluation in identifying the etiology of autism spectrum disorders: 2013 guideline revisions. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 15(5), 399–407 https://doi.org/10.1038/gim.2013.32 PMID: doi:10.1038/gim.2013.32 [CrossRef]
  • Soares, N., Baum, R. & Patel, D. (2017). Developmental-behavioral pediatrics education in the United States: Challenges in the midst of healthcare evolution. International Journal of Medical Education, 8, 396–399 https://doi.org/10.5116/ijme.59f4.2cf5 PMID: doi:10.5116/ijme.59f4.2cf5 [CrossRef]29129829
  • Taylor, L. E., Swerdfeger, A. L. & Eslick, G. D. (2014). Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine, 32(29), 3623–3629 https://doi.org/10.1016/j.vaccine.2014.04.085 PMID: doi:10.1016/j.vaccine.2014.04.085 [CrossRef]24814559
  • Vande Wydeven, K., Kwan, A., Hardan, A. Y. & Bernstein, J. A. (2012). Underutilization of genetics services for autism: The importance of parental awareness and provider recommendation. Journal of Genetic Counseling, 21(6), 803–813 https://doi.org/10.1007/s10897-012-9494-x PMID: doi:10.1007/s10897-012-9494-x [CrossRef]22415587
  • Vasilopoulou, E. & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49 https://doi.org/10.1016/j.rasd.2015.11.008 doi:10.1016/j.rasd.2015.11.008 [CrossRef]
  • Yerramsetti, A. P. (2017). The other patients: Caregiver and clinician stress in treating autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 56(10), S45 https://doi.org/10.1016/j.jaac.2017.07.176 doi:10.1016/j.jaac.2017.07.176 [CrossRef]
  • Zablotsky, B., Kalb, L. G., Freedman, B., Vasa, R. & Stuart, E. A. (2014). Health care experiences and perceived financial impact among families of children with an autism spectrum disorder. Retrieved from https://ps.psychiatryonline.org/doi/full/10.1176/appi.ps.201200552
Authors

Ms. Neupane is Pediatric Nurse Practitioner and PhD Student, Nelda C. Stark College of Nursing, Texas Woman's University, Texas Children's Urgent Care, Houston, Texas.

The author has disclosed no potential conflicts of interest, financial or otherwise.

The author acknowledges Wynona M. Freysteinson, PhD, MN, for her guidance in the preparation of the current article.

Address correspondence to Kunta Gautam Neupane, MPH, MSN, CPNP, Pediatric Nurse Practitioner and PhD Student, Nelda C. Stark College of Nursing, Texas Woman's University, Texas Children's Urgent Care, 6700 Fannin Street, Houston, TX 77030; e-mail: kunta.neupane@gmail.com.

Received: May 03, 2019
Accepted: August 16, 2019
Posted Online: November 11, 2019

10.3928/02793695-20191022-02

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