J. Indian Assoc. Child Adolesc. Ment. Health 2016; 12(4): Original Article

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1 291 J. Indian Assoc. Child Adolesc. Ment. Health 2016; 12(4): Original Article To study the age of recognition of symptoms and their correlates in children diagnosed with autism spectrum disorders: A retrospective study Rahul Bagal, Kranti Kadam, Shubhangi Parkar Address for correspondence: DR. Rahul Bagal, Assistant Professor, Department of Psychiatry, Government Medical College, Nagpur, Maharashtra rahulbagal15@gmail.com Abstract BACKGROUND: Considering the fact that early intervention in Autism spectrum disorders (ASD) can significantly improve the social and communication abilities in these children it is important that the symptoms should be recognized early and intervened early.the present study tries to find out the age of recognition (AOR) of symptoms by parents and delay in diagnosis and seeking professional help in children with ASD in a tertiary health care centre in India. METHOD: Children with intellectual disability with autistic features as primary diagnosis were excluded. The data was collected from the case record form of 50 children with ASD and studied retrospectively from Information regarding onset, type of symptoms, pregnancy complications, birth history and medical complications were studied. Also referral mechanism was studied. RESULT: The mean AOR of symptoms was found to be 3years 6months. A significant delay of three years between the age of recognition of symptoms and age of diagnosis was seen. The AOR was found to be earlier in those childrens having pregnancy related complications, intellectual disability,

2 292 seizure disorder & behavioral problems. The first consultation in majority of cases was with the paediatrician. CONCLUSION: The study highlights that more awareness about ASD needs to be spread among general population. This study highlights the need for proper training amongst health care professionals for diagnosing ASD and adequate referral mechanism. Also monitoring the development of child should be mainstreamed into primary health care services for early diagnosis and intervention. Key words: Autism, Age of Recognition, ASD. INTRODUCTION Autism Spectrum Disorders (ASD) consist of conditions such as Autism, Asperger s disorder, Pervasive Developmental Disorder- Not Otherwise Specified. Its Core symptoms include impaired reciprocal socio-communicative interaction & restricted, stereotyped repetitive behavior. A Global prevalence of 1 per 160 children has been estimated in ASD [1]. The Prevalence has increased in the last two decades [1]. Majority of previous studies have estimated a prevalence of 1% but as per Kim et al, it is 2.6% which might be an exception [2]. However, early detection (less than 2 years) remains a major challenge [1]. The age of parental recognition (AOR) of developmental problems is typically distinguished in the literature from the age of symptom onset, and the former is regarded as representing the upper-bound limit to the actual age of symptom onset (Volkmar, Stier, & Cohen, 1985) [3]. The age and the type of symptoms which

3 293 causes parental concern give us an idea about the different forms of presentation of ASD and also about awareness of the disorder in the society. The Dhaka Declaration on autism spectrum disorders and developmental disabilities in July 2011[4] has not only advocated for rights of these children but also mentioned about the need for increased awareness and also to strengthen the capacity of professionals involved in provision of integrated health service and social service to these children. Similar provisions along with including ASD in all mainstream policies and programs have been made during the Delhi declaration of the south Asian autism network (SAAN) for autism spectrum disorders in February 2013 [5]. One of the challenges faced by children of autism spectrum disorders and their parents apart from disability is that these complex disorders are not identified in a timely manner leading to delay in diagnosis and causing distress to the family. It also causes financial and emotional cost of traversing several services, usually for many years with the hope of identifying their child s disorder [6]. Lack of public awareness, associated stigma & social discrimination add on to the problems. Presence of certain red flag signs in a child requires further developmental evaluation [7]. Early Intervention in ASD has proven to have better developmental outcome, daily functioning & quality of life [1]. Most of cases of worldwide are found in developing countries [1]. Very limited number of research has been done in India. A recent worldwide epidemiological survey had no relevant Indian studies to refer to for prevalence estimates [8]. We

4 294 wanted to study the symptomatology, presentation and characteristics of children diagnosed with ASD in our child guidance clinic, so we decided to do the present study. MATERIALS AND MEHODS: AIMS AND OBJECTIVES: 1. To study retrospectively the Age of Recognition (AOR) by parents in cases of Autism spectrum Disorders (ASD). 2. To study Age of Recognition (AOR) with other correlates. INCLUSION CRITERIA: 1. Those cases which were diagnosed in their case records as autism spectrum disorder as per DSM IV TR. EXCLUSION CRITERIA: Those case records having a diagnosis of Intellectual Disability as their primary diagnosis with sub threshold autistic features were excluded, as they did not fulfill diagnostic criteria for ASD. METHODOLOGY Study was done in the Child Guidance Clinic of Department of Psychiatry, SETH GSMC & KEM Hospital after obtaining the Investigation Review Board (IRB) approval. The study was done in 3 months from November 2013 to January The format of child guidance clinic s case record form has a comprehensive data starting from demographic profile, chief complaints, referred by whom, the reason for referral followed by detailed history, which not only includes longitudinal

5 295 history, birth and developmental history but also records significant events, school history, family history and child s temperament. Those cases that were diagnosed as Intellectual Disability with sub threshold Autistic features were excluded as they did not fit into the diagnostic criteria for ASD. The case record of those diagnosed with ASD as per DSM IV TR from August 2007 Dec 2013 were studied retrospectively for their demographic profile, their education, age at which parents first noticed the symptoms(aor). We noted the symptom 1 st noticed by the parents among all the symptoms and what was the main symptom of concern which made the parents to visit a clinician. We made a note of the birth history and developmental history, any prenatal, post-natal and peri-natal complications mentioned in the records. We tried to find the age at which parents first took the child to a clinician & hence we could know the delay in obtaining professional help. Then after being evaluated by the first clinician, we recorded the delay made by the treating clinician in referring the child for a psychiatry evaluation as it leads to further delay. We examined the records for any significant medical history i.e. seizure disorder, febrile illness and also for family history of ASD or other psychiatric illness. We tried to evaluate the number of patients of ASD who were given pharmacotherapy and the kind of drug given was noted. We also tried to collect the follow up data from the case record sheets of as many patients as possible.

6 296 After data collection appropriate statistics such as non-parametric tests such as Kruskal Wallis test, and multiple regression analysis was applied. The data was analyzed using SPSS RESULTS & DISCUSSION A total of 50 patients diagnosed as Autism Spectrum Disorder were identified in our clinical sample over a period of 6 years out of which 82% (n=41) were male and 18% (n=9) were female which corresponds to the male: female ratio of nearly 4:1 as stated by study done by Idring et al [9] which was a record-linkage study done in Sweden.. female Figure male

7 297 Figure 1.1 shows that number of cases we diagnosed as ASD is increasing every year (except for the year 2010 ) which was also suggested by previous studies that the number of ASD is increasing every year [8]. Figure 1.1: Showing above is the number of ASD cases diagnosed every year. Figure We found that the mean age of recognition (mean AOR) by parents was 3 y 6 mo [11] & the mean age of diagnosis (mean AOD) was found to be 6 y 6 mo, henceforth a gap of around 3 years [Fig 1.2] can be seen between the mean AOR & mean AOD [11].

8 Figure 1.2: As shown in above figure a gap of three years can be seen between the age of recognition (AOR) and age of diagnosis (AOD). Pregnancy related complications in mothers were seen in 36% of cases. Majority of them included hypoxia related complications such as meconium stained liquor, torsion of cord around the neck, delayed labour. Few of them had a past history of abortion also. Also intellectual disability (ID) in 46% which was in accordance with study done by Idring et al [9]. Family history of mental illness is seen in 10% of cases [12], medical complications seen in 34% of cases majority being seizure disorder. History of autism in sibling was seen in only one case [Table 1]. Most common symptom 1st noticed by parents in our study was decreased social interactions in 32% of cases followed by delayed speech in 26% of children [Table 1]. A previous study done by De Giamco et al in which they studied 82 ASD cases consecutively found delayed speech as the most common symptom 1st noticed by parents that concerned them significantly [13]. 298

9 Table 1. Major Clinical findings Findings in ASD children such as: Cases with pregnency related Percentage of cases 36% complications Intellectual disability seen in 46% Cases with family history of mental illness 10% History of medical complications seen in 34% Decreased social interactions as 1 st 32% symptom noticed by parents seen in Speech and language delay as 1 st symptom 26% noticed by parents seen in Hyperactivity was seen in 52%, stereotypical behavior was seen in 36%, while complaints regarding behavior of the child was seen in 58% [Table 2]. Most preffered professional help sought was from paediatricians i.e. 40% cases and 8% patients were referred by ENT specialists suggesting that they have a level of awareness of autism but it needs to be increased nevertheless. 36 % of children were going to normal school at the age of diagnosis, while interestingly around 10 % (n=5) were the number of cases which were referred to us for Intelligence Quotient testing (IQ test) which on evaluation were found to have ASD, implying that many references done for IQ testing assuming intellectual disability may actually have ASD & can cause delay in diagnosis [Table 2]. 299

10 300 36% of children were found to be the only child in their family and a total of 56% children were given pharmacotherapy mainly for hyperactivity & behavior control [Table 2]. Table 2. Major clinical Findings. Findings in ASD children such as: Percentage of cases History of hyperactivity 52% History of behavioral problems 58% Peadiatrics reference sought first by parents 40% in Going to normal school 36% Single child in the family 36% Pharmacotherapy given in 56% Referred for IQ testing first from paediatrics 10% and later on evaluation was found to have ASD The mean AOR in children having pregnancy related complications, intellectual disability, seizure disorder and behavior problems was found to be lower than the mean AOR in those without these complaints. This is in keeping with the findings in a study done by Chawarska et al [3] [Table 3]. The age at diagnosis was also earlier in the same groups as above [Table 4]. However, those with a family

11 301 history of mental illness were found to have a late mean AOR than those without a family hidstory of mental illness [Table 3]. Table 3. Comparing mean age of recognition (AOR) amongst different parameters. Findings in ASD children Present Absent Pregnency complications related 2 yrs 9 mo 3 yrs 9 mo Intellectual disability 2 yrs 8 mo 3 yrs 10 mo Seizure disorder 3 yrs 1 mo 3 yrs 6 mo Behavioral problems 3 yrs 1 mo 4 yrs 10 mo Family history of mental illness 5 yrs 1 mo 3 yrs 2 mo Alone child in family 4 yrs 2 mo 3 yrs 1 mo Table 4. Comparing mean age of diagnosis (AOD) amongst different parameters. Findings in ASD children Present Absent Pregnency complications related 5 yrs 10 mo 7 yrs Intellectual disability 6 yrs 2 mo 7 yrs Seizure disorder 4 yrs 5 mo 6 yrs 9 mo Behavioral problems 7 yrs 2 mo 8 yrs Family history of mental illness 8 yrs 7 mo 6 yrs 5 mo

12 302 On further comparision those with history of pregnancy related complications were found to have speech & language delay as the 1 st symptom noticed by parents. Also they had higher percentage of Intellectual Disability (66%), seizure disorder (33%) & hyperactivity (27%). On the other hand those without pregnancy related complications were had decreased social interactions as the 1 st symptom noticed by parents and these children had a higher percentage of behavioral problems (62%) [Table 5]. The median AOR in children with pregnancy related complications was found to be earlier. The differences was found to be statistically significant [Table 5]. Table 5. Comparing variables in ASD children with or without pregnancy related complications. Pregnancy related PRESENT ABSENT complications 1 st symptom noticed Speech & language delay Delayed interactions social Intellectual disability 66% 56% Seizure disorder 33% 15% Behavioral problems 55% 62% Hyperactivity 27% 18% Median AOR 3 years* 3years & 6 months *Data was statistically significant. (P value = 0.49)

13 303 On comparing the groups with or without Intellectual Disability, the differences were found to be statistically non-significant From our study data we cannot say whether pregnancy related complications, medical complications, intellectual disability and behavioral problems during childhood are independent risk factors or not and some of them may be confounders. However few previous studies have suggested that there might be an association between all of these factors and autism So considering the age of recognition (AOR) as dependent variable we did a multiple regression analysis with other variables such as pregnancy complications, medical complications, intellectual disability and behavioral problems during childhood [Table 6] during which we found that a 29% variance in age of recognition can be explained by this risk factors. But further prospective studies are needed to confirm this findings.

14 Table 6. Multiple regression analysis between the AOR as dependent variable and other independent variables. 304 Independent variables 95% confidence Standard Multiple regression interval error analysis Pregnancy to complications Intellectual disability to R squared value = Medical complications to Behavioral problems to CONCLUSIONS To our knowlegde this was amongst the few studies where age of recognition amongst chidren with autism spectrum disorder has been studied retrospectively. And also amongst the few studies where data related to pregnancy and medical complications has been presented elaboratively. The mean Age of Recognition(AOR) for ASD in our study was found to be 3 years 6 months & the mean Age of Diagnosis in ASD is 6 years 6 months. The age of recognition was found to be earlier in those childrens having pregnancy related complications, intellectual disability, seizure disorder & behavioral problems. Among the ASD cases those having pregnancy related complications were found to have a higher percentage of intellectual disability, seizure disorder and

15 305 hyperactivity. Also 29% variance in AOR can be explained by pregnancy related complications, intellectual disability, medical complications and behavioral problems. From our study we found not only a later age of recognition but as well as late age for seeking professional help and so late age of diagnosis. So, spreading awareness about Autism Spectrum Disorders in terms of its presentation, early signs & symptoms is needed not only in general population but also among clinicians especially paediatrician & primary care physician in villages as they are the first point of contact for these cases. Routine Developmental Surveillance & Screening for early symptoms of ASD in general by Pediatricians at regular intervals can be recommended. The same has been concluded in the Dhaka declaration 2011 and Delhi declaration 2013 on autism spectrum disorders. Considering the complexity involved children at high risk should receive a comprehensive line of management involving not only the paediatrician, psychiatrist, psychologist, occupational therapist but also the school teachers and parents. Awareness of development of social milestones in less than 2 yrs among Pediatricians during routine visit, health care worker and nursing staff during vaccinations & other screening programs both at national & regional level should be promoted. Providing early behavioral interventions & psychoeducation for improving social & cognitive outcomes & subsequently overall prognosis. And last but not the least counselling the family members regarding the illness,

16 306 treatment options & its outcome and the prognosis can help in reducing the distress and better functioning overall. REFERENCES: 1. WHO meeting report on ASD & other developmental disorders, September Kim et al, prevalence of ASD in a total population sample, Am J Psychiatry, September 2011; 168(9): Chawarska et al; Parental Recognition of Developmental Problems in Toddlers with ASD. J Autism Dev Disord, Feb 2007; 37(1): DOI /s Dhaka declaration on autism spectrum disorders and developmental disabilities, 25 July Delhi declaration of South Asian Autism Network (SAAN) for Autism Spectrum Disorders conference February Jhonson C.P. Mayer s S.M. Identification & evaluation of children with Autism Spectrum Disorders. Paediatrics. 2007; 120(5): Filipek P.A. et al; Practice parameter: Screening & Diagnosis of autism. Neurology, August 2000; 55:

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18 Lakhan R. The co-existence of intellectual disability and psychiatric disorders in children aged 3-18 years in Barwani district, India. ISRN Psychiatry. May Doi: /2013/ Lovaas, O. Ivar. Behavior treatment and normal educational and intellectual functioning in young autistic children. J Consult Clin Psychol, Feb 1987; 55(1): 3-9. Dr. Rahul Bagal, Assistant Professor, Department of Psychiatry, Government Medical College, Nagpur (M.S.), Dr. Kranti Kadam, Associate Professor, Dr. Shubhangi Parkar, Professor & Head, Department of Psychiatry, Seth GSMC & KEMH Mumbai, India.