|Year : 2022 | Volume
| Issue : 2 | Page : 166-170
Age at diagnosis for autism spectrum disorders: Does it differ by place of residence?
Malhi Prahbhjot1, Pratibha Singhi2
1 Professor, Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh, India
2 Retired Professor, Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Chandigarh, India
|Date of Submission||17-Sep-2021|
|Date of Decision||21-Nov-2021|
|Date of Acceptance||01-Feb-2022|
|Date of Web Publication||12-Jul-2022|
Department of Pediatrics, Post Graduate Institute of Medical Education and Research, Sector 12, Chandigarh - 160 012
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Despite steady decline in the age of diagnosis (AOD) at the global level, it has not declined uniformly, and marked disparities are documented by income, education, race, and access to health care. Objectives: The objectives of the study are to examine the urban/rural disparities in the initial age of autism diagnosis and to understand the interplay of the underlying demographic and social factors. Methods: A retrospective case record review of all children who received their initial diagnosis of autism at the Pediatric Psychology Clinic (1997–2018) of a tertiary advanced pediatric center at Chandigarh was conducted. A structured abstraction data form was used to extract demographic, socioeconomic, and clinical information from the files maintained at the clinic. Results: A total of 1321 case records were examined. The mean AOD was 4.62 years (standard deviation = 2.38) and children from rural communities were diagnosed at 4.87 years, nearly 0.35 years later than urban children (t = 2.47, P = 0.013). Results indicated that 31.1% of the variance in the AOD for children from rural areas was predicted by two variables, namely the number of children in the family and total Childhood Autism Rating Scale (CARS) score (F = 13.62, P = 0.001). For the urban sample, three variables emerged as significant predictors including the number of children in the family, total CARS score, and maternal education and these together explained 20.2% of the variance in the AOD (F = 19.60, P = 0.001). Conclusion: The public health system must be sensitized to the unmet needs of the marginalized socioeconomic groups to access diagnostic and management services in a timely manner.
Keywords: Age of diagnosis, autism spectrum disorders, public health system, socio-economic disparities, vulnerable groups
|How to cite this article:|
Prahbhjot M, Singhi P. Age at diagnosis for autism spectrum disorders: Does it differ by place of residence?. Indian J Public Health 2022;66:166-70
|How to cite this URL:|
Prahbhjot M, Singhi P. Age at diagnosis for autism spectrum disorders: Does it differ by place of residence?. Indian J Public Health [serial online] 2022 [cited 2022 Aug 18];66:166-70. Available from: https://www.ijph.in/text.asp?2022/66/2/166/350661
| Introduction|| |
Recent evidence documents the increase in prevalence rates of autism all over the world, including Asia., Increased awareness regarding autism at the global level has led to a steady decline in the age of diagnosis (AOD), especially in developed countries. Research indicates that AOD has not declined uniformly, and marked disparities are documented by income, education, race, and access to health care. Early diagnosis of autism is the gateway to specialized services and delays can deny children of crucial opportunities for treatment and increase their risk for suboptimal long-term functional outcomes. Socioeconomic disparities in the provision of services can widen the gaps in outcome.
To date, there is little research from India on whether AOD has declined over time and it is also unclear whether the factors identified leading to delay in diagnosis in the developed countries are the same in the Low Middle Income Countries (LMICs). Clearly, there is a need to further understanding of the underlying demographic and socioeconomic ascertainment biases to identify the barriers in the diagnosis of autism. The present study attempts to address this gap in the literature and specifically aims to examine the urban/rural disparities in the initial age of autism spectrum disorder (ASD) diagnosis and to understand the interplay of the underlying demographic and social factors.
| Methods|| |
We conducted a retrospective case record review of all children who received their initial diagnosis at the Pediatric Psychology Clinic during the period from 1997 to 2018 of a tertiary advanced pediatric centre at the Post Graduate Medical Education and Research, Chandigarh. A structured abstraction data form was used to extract demographic, socioeconomic, and clinical information from the files maintained at the clinic. Information extracted included sex and age at diagnosis of the child, year of birth, rural/urban residence, paternal and maternal education, maternal age, family structure, birth order, total number of children, and monthly household income. Diagnoses were made as per the Diagnostic and Statistical Manual of Mental Disorders criteria and clinical judgment. Autism severity was assessed and by the Childhood Autism Rating Scale (CARS). The CARS is an observational 15 items scale that assesses autistic behaviors. Each item is rated from 1 to 4 and scores range from 15 to 60. Higher scores indicate greater severity of autism. Cut off scores identify children with mild/moderate and severe autism. The study was approved by the Institutional ethics committee.
| Results|| |
A total of 1321 case records were examined (age range 15 months to 13.92 years, boys = 83.4%, rural = 30.3%). The mean AOD was 4.62 years (standard deviation = 2.38). Overall children from rural communities were diagnosed at 4.87 years, nearly 0.35 years later than urban children (t = 2.47, P = 0.013). [Table 1] presents the sociodemographic characteristics of the sample. The rural and urban samples were well matched on the gender of the child and the number of children in the family. However, there were significant differences between the two groups on the level of education of the mother (χ2 = 152.21, P = 0.0001) and the type of family structure (χ2 = 29.97, P = 0.0001). The education level of mothers' and the proportion of nuclear families in the urban sample, relative to the rural sample, were significantly higher.
Age at diagnosis by background characteristics and residence is presented in [Table 2]. Interestingly, age at diagnosis difference by residence was not found uniformly for all groups. For example, differences by residence were more marked for boys with ASD (t = 2.38, P = 0.023) but not for girls with ASD (t = 0.94, P = 0.349) and were present for joint families (t = 2.97, P = 0.003) but not nuclear families. Moreover, there were no differences in AOD among rural and urban families, when the size of the family comprised of one or two children, but the difference in age at diagnosis by residence was significant when the family size comprised of 3 or more children (t = 2.31, P = 0.022). Rural children with ASD in large families were found to be diagnosed at 1,19 years later as compared to their urban counterparts. Moreover, children with mild/moderate autism from rural areas were diagnosed at significantly later ages at a mean age of 6.02 years which was 1.73 years more than the mild ASD children from urban areas (t = 2.33, P =0.020). Surprisingly, no differences were found by the education level of mother and residence.
Stepwise multivariate regression analysis was utilized to identify the significant predictors of the AOD, separately for rural and urban samples, using socioeconomic status and demographic variables (maternal education, number of children), cognitive functioning, and severity of autism (total CARS score) as independent variables. Results indicated that 31.1% of the variance in the AOD of ASD children from rural areas was predicted by two variables namely the number of children in the family and total CARS score (F = 13.62, P = 0.001). For the urban sample, three variables emerged as significant predictors including the number of children in the family, total CARS score, and maternal education and these together explained 20.2% of the variance in the AOD of autism (F = 19.60, P = 0.001).
The AOD was found to consistently decline by year of birth in the last two decades for both rural and urban children [Figure 1]. In rural areas, AOD has declined from 7.22 years for children born prior to the year 2000 to 2.98 years for the 2013–2017 birth cohort (F = 41.87, P = 0.0001). For the urban ASD children, the AOD declined from 5.40 years to 2.93 years in the more recent birth cohorts (F = 34.12, P = 0.0001). The difference in AOD by residence was found to decline more rapidly for the recent birth cohorts, and little difference in AOD was found by residence for children born after 2013.
| Discussion|| |
The present study retrospectively analyzed the case records of children with a diagnosis of autism born from the period 1995–2016 to address two main research issues. First, to examine the differences in the AOD by place of residence and to study their associations with sociodemographic and clinical variables. Second, to examine whether the differences in the AOD by place of residence have declined over time. An increased risk for children with ASD from rural areas to be diagnosed on an average, 0.35 years or 4.2 months later than their urban counterparts was demonstrated in the present study. Since favorable prognosis in children with autism is linked to early identification and initiation of targeted interventions, these results are all the more disconcerting., A substantial delay in the recognition of autism in children from rural areas, especially for girls, large-sized families, and milder form of the disorder, found in the present study probably reflects the limited access and utilization of specialty health-care services, geographical barriers, financial hardships, biases in referral practices, lower levels of education, and limited awareness about autism and other developmental disabilities.,,,, Prior research suggests that transportation costs that families from remote areas have to incur to seek specialized services, coupled with financial burdens may further add to the burden and hardships faced by the affected rural households.
Moreover, families from underserved populations may have difficulty in navigating the complex health services system and communicating their concerns to the service providers. In this context, it is noteworthy that unless parents proactively express their developmental concerns, more often than not, clinicians may miss the early clinical signs of autism., Prior research reveals that half the children with autism who are diagnosed late receive other diagnoses, primarily developmental delay or attention deficit hyperactivity disorder, further adding to delays., It is important to recognize that getting a timely diagnosis and the requisite services require equitable access to health services as mandated by the World Health Organization. Unfortunately, there is a marked inequity in health-care utilization and access to quality health-care services and disadvantaged socioeconomic groups suffer the most. Indeed, evidence indicates that poor functional outcome among children with autism adversely impacts the coping skills of the family, impairs quality of life, and increases the costs to the society. It is encouraging to note that disparities in the age of autism diagnosis by place of residence have declined for the recent birth cohorts of autism, at least in specialty tertiary care centers. Possibly, this reflects the changes in the national health policy over time. A paradigm shift in the country's health policy was heralded with the launch of the National Rural Health Mission in 2005 to address the health inequities in rural areas of the country. This was followed by the National Urban Health Mission in 2013 with the notable addition of the Rashtriya Bal Swasthya Karyakram program in the same year to improve the overall quality of life of children including screening children for the 4 Ds (defects at birth, deficiencies, diseases, and developmental delay).
There is a growing recognition that cultural factors, belief systems, trust and familiarity with the health-care provider play a critical role in the health-seeking behaviors of parents of children with developmental disabilities.,,, In a recently published study, 15 families with diagnosed ASD children, from diverse cultural and ethnic communities, were interviewed. The authors reported that cultural beliefs influenced the recognition of symptoms, perceptions of its etiology, help-seeking behaviors, and treatment choices. Rural families may be more tolerant of deviant behaviors and developmental delays, more likely to believe that the child will outgrow the problems, seek out help from faith healers and religious leaders before seeking medical help.,, Moreover, some of the early behavioral symptoms of autism may be perceived as normal and acceptable variations and not considered as signs of a disorder.,,, For example, many parents interpret poor eye contact as shyness and an endearing characteristic of young children. Lack of imaginative play or abnormalities in play may go unnoticed in busy joint family homes where mothers have little time to play and observe their children. Boys are typically believed to be late-talkers and such beliefs may deter seeking professional help. It also remains possible, that even when parents suspect developmental problems, they first have to traverse the difficult course of seeking the extended family acquiescence, before they actively seek expert evaluation. The current results support this as ASD children from joint rural families, relative to nuclear families, were significantly identified at older ages. In addition, the well-entrenched son preference in North India was reflected in earlier health-seeking behaviors in rural communities for male children and delayed diagnosis of autism for daughters. Asian cultures generally do not think that early social and language deficits are developmental aberrations and may dismiss them as normative variations that the child may outgrow and may delay seeking help.,, Evidence indicates that rural respondents are more likely to seek out informal practitioners (traditional birth attendants, spiritual leaders, unqualified practitioners) with limited awareness and training about developmental disabilities as they feel more comfortable with them. Indeed, choice of services may be dictated more by familiarity, trust, social, and cultural norms rather than by expertise and educational qualifications. Clearly, the lens through which rural families perceive their children may be very different from that of the health-care providers, which may further contribute to a missed or significantly later diagnosis of autism for rural families. This may not, however, be true for the peripheral health centers. Clearly, providing a timely diagnosis for the underrepresented populations like rural communities and girls remains a challenge for both families and clinicians.
The study has a few limitations. First, the study is based on retrospective case chart review and hence suffers from potential sources of bias in recording and extracting information from records. Second, it is possible that since this study is from a tertiary care advanced pediatric center, it may suffer from biased case ascertainment. In any case, families which access services of specialized centers form a select group and are relatively more aware and resourceful. The underserved families, particularly from remote rural areas, are less likely to reach tertiary care centers and in that case, their AOD may have been over-estimated and the actual difference may be even greater than reported in the study. Since we have not examined the extent of under-ascertainment, this may be a potential limitation of the study. Future extensions of the work may keep this in mind. Notwithstanding these limitations, the main strength of the study is its large sample size and the data spanning more than two decades.
| Conclusion|| |
In sum, the current findings reaffirm and extend, as with many other health outcomes, distinct differences in the AOD of autism based on socioeconomic disparities. Indeed, disadvantaged groups in India may be deprived of crucial opportunities for interventions at critical stages of development. Possibly providing telemedicine services is a cost-effective way of overcoming some of the health service barriers and may improve access to amenities and professional care. The feasibility of such programs, however, needs to be examined in future research. Nevertheless, quality treatment options may remain limited and elusive for affected rural households and would probably require more innovation and public health spending. The public health-care system must be sensitized to the unmet needs of the marginalized socioeconomic and diverse cultural groups so that they can access diagnostic facilities and evidence-based treatments and supports for autism in a timely manner.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Chiarotti F, Venerosi A. Epidemiology of sautism spectrum disorders: A review of worldwide prevalence estimates since 2014. Brain Sci 2020;10:E274.
Qiu S, Lu Y, Li Y, Shi J, Cui H, Gu Y, et al.
Prevalence of autism spectrum disorder in Asia: A systematic review and meta-analysis. Psychiatry Res 2020;284:112679.
Bachmann CJ, Gerste B, Hoffmann F. Diagnoses of autism spectrum disorders in Germany: Time trends in administrative prevalence and diagnostic stability. Autism 2018;22:283-90.
Durkin MS, Maenner MJ, Baio J, Christensen D, Daniels J, Fitzgerald R, et al.
Autism spectrum disorder among US children (2002-2010): Socioeconomic, racial, and ethnic disparities. Am J Public Health 2017;107:1818-26.
Dallman AR, Artis J, Watson L, Wright S. Systematic review of disparities and differences in the access and use of allied health services amongst children with autism spectrum disorders. J Autism Dev Disord 2021;51:1316-30.
French L, Kennedy EM. Annual research review: Early intervention for infants and young children with, or at-risk of, autism spectrum disorder: A systematic review. J Child Psychol Psychiatry 2018;59:444-56.
Fuller EA, Oliver K, Vejnoska SF, Rogers SJ. The effects of the early start denver model for children with autism spectrum disorder: A meta-analysis. Brain Sci 2020;10:E368.
Hartley D. Rural health disparities, population health, and rural culture. Am J Public Health 2004;94:1675-8.
Mandell DS, Novak MM, Zubritsky CD. Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics 2005;116:1480-6.
Palmer RF, Blanchard S, Jean CR, Mandell DS. School district resources and identification of children with autistic disorder. Am J Public Health 2005;95:125-30.
Antezana L, Scarpa A, Valdespino A, Albright J, Richey JA. Rural trends in diagnosis and services for autism spectrum disorder. Front Psychol 2017;8:590.
Ashburner J, Vickerstaff S, Beetge J, Copley J. Remote versus face-to-face delivery of early intervention programs for children with autism spectrum disorders: Perceptions of rural families and service providers. Res Autism Spectr Disord 2016;23:1-14.
Malhi P, Singhi P. Can parental concerns distinguish very young autistic from non-autistic children? Psychol Stud 2008;53:339-43.
Zablotsky B, Colpe LJ, Pringle BA, Kogan MD, Rice C, Blumberg SJ. Age of parental concern, diagnosis, and service initiation among children with autism spectrum disorder. Am J Intellect Dev Disabil 2017;122:49-61.
Jónsdóttir SL, Saemundsen E, Antonsdóttir IS, Sigurdardottir S, Olason D. Children diagnosed with autism spectrum disorder before or after the age of 6 years. Res Autism Spectr Disord 2011;5:175-84.
Kentrou V, de Veld DM, Mataw KJ, Begeer S. Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-deficit/hyperactivity disorder. Autism 2019;23:1065-72.
Khetrapal Singh P, Travis P. Time to deliver: Accelerating more equitable access to better quality primary health-care services in the WHO South-East Asia Region. WHO South East Asia J Public Health 2019;8:1-3.
Vernhet C, Dellapiazza F, Blanc N, Cousson-Gélie F, Miot S, Roeyers H, et al.
Coping strategies of parents of children with autism spectrum disorder: A systematic review. Eur Child Adolesc Psychiatry 2019;28:747-58.
Cappe , Poirier N, Sankey C, Belzil A, Dionne C. Quality of life of French Canadian parents raising a child with autism spectrum disorder and effects of psychosocial factors. Qual Life Res 2018;27:955-67.
Rogge N, Janssen J. The economic costs of autism spectrum disorder: A literature review. J Autism Dev Disord 2019;49:2873-900.
Ravindran N, Myers BJ. Beliefs and practices regarding autism in Indian families now settled abroad an internet survey. Focus Autism Dev Dis 2013;28:44-53.
Preeti DK, Srinath DS, Seshadri DS, Girimaji DS, Kommu DJ. Lost time-need for more awareness in early intervention of autism spectrum disorder. Asian J Psychiatr 2017;25:13-5.
de Leeuw A, Happé F, Hoekstra RA. A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Res 2020;13:1029-50.
Anand G, Chhajed D, Shah S, Atkins S, Diwan V. Do qualifications matter? A qualitative study of how villagers decide their health care providers in a developing economy. PLoS One 2019;14:e0220316.
Zakirova-Engstrand R, Hirvikoski T, Westling Allodi M, Roll-Pettersson L. Culturally diverse families of young children with ASD in Sweden: Parental explanatory models. PLoS One 2020;15:e0236329.
Daley TC. From symptom recognition to diagnosis: Children with autism in urban India. Soc Sci Med 2004;58:1323-35.
Jegatheesan B, Miller PJ, Fowler SA. Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus Autism Dev Dis 2010;25:98-109.
Gona JK, Newton CR, Rimba K, Mapenzi R, Kihara M, Van de Vijver FJ, et al.
Parents' and professionals' perceptions on causes and treatment options for Autism Spectrum Disorders (ASD) in a multicultural context on the Kenyan Coast. PLoS One 2015;10:e0132729.
Freeth M, Sheppard E, Ramachandran R, Milne E. Across-cultural comparison of autistic traits in the UK, India and Malaysia. J Autism Dev Disord 2013;43:2569-83.
Norbury CF, Sparks A. Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Dev Psychol 2013;49:45-58.
[Table 1], [Table 2]