J. Indian Assoc. Child Adolesc. Ment. Health 2013; 9(3): Guest Editorial

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1 52 J. Indian Assoc. Child Adolesc. Ment. Health 2013; 9(3):52-61 Guest Editorial Autism spectrum disorders: increasing prevalence and unmet need Dr. Chhitij Srivastava, MD, DNB, MRCPsych, CCT (Child and Adolescent Psychiatry) Address for correspondence: Lecturer Psychiatry, Psychiatry Unit, Department of Medicine, MLN Medical College, Allahabad. E. Mail: Autism Spectrum Disorders (ASD) were once thought to be uncommon. The first epidemiological studies of autism reported a prevalence of 4 per in the mid 1960s [1]. However, the last few decades have seen a significant rise in the prevalence of ASD, although the reasons for this are unclear. Based on a recent worldwide systematic review, the median prevalence estimate of ASD was 62/10000 [2]. Prevalence rates in some parts of the world were significantly higher, for example the rates of ASD were found to be around 2% in Korea [3]. Most of the recent studies conducted in the western population have reported prevalence rates of around 1% of the child population [4, 5]. Although, research in India suffers from a severe lack of epidemiological studies in this area, it is estimated that the prevalence figures may not be very different from the rest of the world. Despite the increasing prevalence of ASD, there is a huge gap between the needs and the services available for these children in India. Increase in prevalence: a result of changing concepts? It is not entirely clear if the rise in prevalence of ASD is a true rise or a proxy for changing criteria and concepts. Evidence points towards the latter although an actual rise has not been comprehensively ruled out.

2 53 Over the last few decades, the concept of autism has expanded to include a spectrum of disorders. Twin studies have also supported the dimensional view of autism [6]. Conceptualising autism as a broader spectrum of disorders has understandably led to a substantial rise in the number of children diagnosed with this condition. Diagnostic substitution has also played its part. Some children who would nowadays be diagnosed unambiguously with ASD would have received other diagnoses in the past including mental retardation, learning difficulties and developmental language disorders [7]. Early age at diagnosis has also been shown to contribute to the rising numbers of children diagnosed with ASD [8]. The above factors coupled with increasing awareness have played a major role in explaining this reported increase in prevalence [9]. Increase in prevalence: Is it a true rise? Although the above factors are clearly responsible for this reported rise in prevalence, the hypothesis that there has been an actual rise is yet to be adequately tested and therefore cannot be ruled out. Given the high heritability of autism (about 90%), it s important to look at the genetic factors that may play a role. Simonoff [10] discussed that substantial or rapid increases in the rate of ASD are inconsistent with polygenic inheritance; however other genetic mechanisms especially small, submicroscopic genetic deletions and duplications (which are referred to as Copy Number Variants) may play a role. The extent of their role in ASD remains uncertain but nevertheless promising and needs to be fully explored. Assortative mating theory (meaning like marries like ) has also been implicated in increasing autism prevalence [11]. This theory postulates that parents who are carrying

3 54 the genes for autism may be more likely to meet each other and start a family now as compared to previous generations and this could therefore increase the prevalence. Although autism is shown to have high heritability, environmental factors would still have a significant role to play through gene environment interactions. The UK Romanian adoption study suggested the role of early deprivation in causing quasi-autism symptoms thereby postulating a link between deprivation and social and communication difficulties [12]. These difficulties can appear strikingly similar to that seen in ASD. There have been numerous claims that increase in the prevalence of ASD has been partly due to specific environmental factors such as the use of the mumps-measles-rubella triple vaccine [13] and the use of thimerosal, a vaccine preservative that contains mercury. The research evidence doesn t support the MMR [14] or the thimerosal theory [15]. However, this issue is probably not yet resolved as some recent studies continue to associate some of the other vaccines with ASD. For example, Delong et al [16] suggested a possible link between susceptible children in the US, receiving a battery of vaccinations and developing autism or speech disorders. They speculate that although mercury has been removed from many childhood vaccines, other ingredients especially aluminium could link vaccines to autism. Gallagher et al [17] suggested a link between parental report of autism and hepatitis B vaccination. Clearly, further research into the relationship between vaccines and autism is warranted. However, this needs to be approached with utmost care, as some of the effects of bad research can be extremely detrimental. A glaring example is the recent drastic rise in measles infection in various parts of England because

4 55 more than a decade ago, British parents refused to give measles vaccine to at least a million children because of it s postulated link with autism. Advanced maternal and paternal ages have also been implicated as independently being associated with ASD risk [18] and these need to be systematically studied. Autism spectrum disorders: An area of unmet need Whatever the reasons for the increase in ASD prevalence may be, its implications on service delivery have to be taken very seriously. It has been shown that intensive interventions that are started early can be very helpful in altering the developmental trajectory for a significant proportion of these children. Despite this knowledge, services for ASD hardly exist in most places. To plan services, one must have an estimate of the problem, which we sadly don t have in India. A recent worldwide systematic review of epidemiological surveys of autistic disorder and PDD had no relevant Indian studies to refer to for prevalence estimates [2]. There are 3 Indian studies that have been planned to bridge this glaring gap and all are being funded by the International Autism Epidemiology Network (IAEN) [19]. The Indian studies are based at the The Autism Research and Training Initiative in India, Sangath, Goa, Action for Autism, New Delhi and Child Development Center, Thiruvananthapuram. Hopefully they will serve their purpose, which would be to establish sound methodology for carrying such studies in the Indian population, generate awareness and most importantly give us prevalence estimates. It would be important for different centres to collaborate and plan multi-site studies in future, which most importantly should have common methodology.

5 56 Large-scale epidemiological studies are generally difficult to plan in a vast and diverse country like India. This is largely due to a severe dearth of trained professionals in most parts of the country, which translates into massive variability in the resources available to conduct such studies. A similar lack of professional expertise exists at the level of planning therapeutic services for this population. Shastri et al [20] highlighted that in India, child mental health services have been generally neglected. Ten per cent of the child population is in need of special care and treatment but only one per cent gets it and there is a severe lack of awareness of what these children need. It is therefore important that the epidemiological studies on ASD go hand in hand with awareness programmes. These awareness programmes need to target a variety of audience including medical professionals, medical students, psychologists, speech therapists, hospital administrators, school staff along with the general population. Charities like Action for Autism (AFA), New Delhi and Communication Developmental Eclectic Approach to Language Learning (ComDEALL) trust, Bangalore have been particularly effective in doing this in the recent past, but this needs to spread across the country including rural areas. By spreading awareness amongst the medical professionals, we can hope that the current generation of doctors will have a much better understanding of ASD and related developmental disorders and that they will be able to build on this at the level of postgraduate training. Child psychiatrists and developmental paediatricians would have the most expertise in recognition and diagnosis. However it is still too stigmatizing to take your child to a psychiatrist while paediatrics training in India in most places has little

6 57 emphasis on these aspects. Given the set-up of postgraduate training in India, it is extremely important that paediatricians develop expertise in this area but with considerable input from child psychiatrists, general psychiatrists and paediatric neurologists where they exist. Different professionals need to collaborate and share expertise and experience at this stage at various levels. To help plan therapeutic services, a number of professionals from other specialities including psychologists, speech and language therapists, occupational therapists and teachers will need to undergo the requisite training, collaborate and work together. It has been shown that intensive interventions that are started early can be very helpful in altering the developmental trajectory for a significant proportion of these children. Out of the available models for such interventions in India, ComDEALL is perhaps the most structured and comprehensive one and is slowly gathering good evidence base [21]. It s time that training in these interventions becomes available across India; only then will it benefit the masses. It s important to remember that development of services for ASD can only take place in the context of generic childhood and adolescent mental health services that incorporate multiple disciplines as mentioned above. Sadly, these services either don t exist in most areas or are extremely fragmented except for a few centres of excellence that are not accessible for most of the population. This can only change if child mental health becomes a priority at the level of policy making by the Government. In trying to avoid ending on a depressive note, I would want to draw attention to some of

7 58 the Government initiatives in this area. It s indeed refreshing to know that the Government of India recognizes autism as a disability, primarily as a result of intense work by AFA and other autism charities with the Ministry of Health in the mid-1990's. In the recent years, the National Trust for the welfare of persons with autism, cerebral palsy, mental retardation and multiple disabilities has taken a lot of initiatives to spread awareness about autism and plan intervention services. For example there is provision for an early intervention programme called Aspiration Day Care Centre Scheme that aims to work with children 0-6 years with developmental disabilities, to make them ready for mainstream and special schools. This clearly shows that the Government is willing to invest in development of services for these children. As professionals, we need to collaborate and build on these initiatives so that together we can help these children who see the world differently from us, lead more fulfilling lives. References 1. Lotter V. Epidemiology of autistic conditions in young children. Soc Psychiatry 1966; 1: Elsabbagh M, Divan G, Koh Y-J, Kim YS, Kauchali S, Marcín C, Montiel-Nava C, Patel V, Paula CS, Wang C, Yasamy MT, Fombonne E. Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Res 2012; 5: Kim YS, Leventhal BL, Koh YJ, Fombonne E, Laska E, et al. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry 2011; 168:

8 59 4. Baron-Cohen S, Scott FJ, Allison C, et al. Autism spectrum prevalence: a schoolbased U.K. population study. Br J Psychiatry 2009; 194: Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, United States, MMWR: Morbidity and Mortality Weekly Report 2009; 58:(SS10) Robinson EB, Koenen KC, McCormick MC, Munir K, Hallet V, Happe F, et al. Evidence that autistic traits show the same etiology in the general population and at the quantitative extremes (5%, 2.5%, and 1%). Arch Gen Psychiatry 2011; 68: Bishop DV, Whitehouse AJ, Watt HJ et al. Autism and diagnostic substitution: evidence from a study of adults with a history of developmental language disorder. Dev Med Child Neurol 2008; 50(5): Wazana A, Bresnahan M, Kline J. The autism epidemic: fact or artifact? J Am Acad Child Adolesc Psychiatry 2007; 46: Fombonne E. Epidemiology of Pervasive Developmental Disorders. Pediatr Res 2009; 65(6): Simonoff E. Autism spectrum disorder: prevalence and cause may be bound together. Br J Psychiatry 2012; 201: Baron Cohen S. Two new theories of autism: hyper systemising and assortative mating. Arch Dis Child 2006 January; 91(1): 2 5.

9 Rutter M, Andersen-Wood L, Beckett C, Bredenkamp D, Castle J, Groothues C, et al. Quasi-autistic patterns following severe early global privation. English and Romanian Adoptees (ERA) Study Team. J Child Psychol Psychiatry 1999; 40: Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, Malik M, et al. Ileallymphoid-nodular hyperplasia, non specific colitis, and pervasive developmental disorder in children (see comments). Lancet 1998; 351: Rutter M. Incidence of autism spectrum disorders: changes over time and their meaning. Acta Pediatr 2005; 94: Hviid A, Stellfield M, Wohlfahrt J, Melbye M. Association between thimerosalcontaining vaccine and autism. JAMA 2003; 290: Delong G. A positive association found between autism prevalence and childhood vaccination uptake across the U.S. population. J Toxicol Environ Health Part A 2011;74(14): Gallagher CM, Goodman MS. Hepatitis B vaccination of male neonates and autism diagnosis, NHIS J Toxicol Environ Health Part A 2010; 73 (24): Croen LA, Najjar DV, Fireman B, Grether JK. Maternal and Paternal Age and Risk of Autism Spectrum Disorders. Arch Pediatr Adolesc Med 2007;161(4): Available from Shastri PC, Shastri JP, Shastri D. Research in child and adolescent psychiatry in India. Indian J Psychiatry 2010; 52(Suppl1): S219 S223.

10 Karanth P, Shaista S, Srikanth N. Efficacy of Communication DEALL: an indigenous early intervention program for children with autism spectrum disorders. Indian J Pediatr 2010; 77(9): Dr. Chhitij Srivastava, Lecturer Psychiatry, Psychiatry Unit, Department of Medicine, MLN Medical College, Allahabad.

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