Autism Spectrum Disorders: Perspective from Pakistan

Autism Spectrum Disorders: Perspective from Pakistan Nazish Imran and Muhammad Waqar Azeem

Introduction Pakistan, a developing country in Southeast Asia, with the population of more than 181 million, is the sixth most populous nation in the world (Population Reference Bureau 2009). More than 38 % of this population are under the age of 15. Although significant improvements have been noticed in the last few decades in provision of pediatric health services, unfortunately the areas of child mental health and learning disability remain largely neglected. One needs to get an overview of the health-care delivery system in Pakistan to better understand health-care professionals’ (HCP) views and understanding about autism spectrum disorders (ASD).

Health-Care Delivery System in Pakistan General practitioners are the backbone of health-care delivery system in Pakistan. The public hospitals, which provide services to a large portion of poor patients, unfortunately are inadequately funded and patients themselves bear the health-care costs in most instances. Patients who belong to higher socioeconomic groups prefer to get services from the privately run hospitals and clinics. Only about 1 % of country’s annual budget is spent on health. Mental health, including child mental health, has no separate budget allocation.

N. Imran (*) Department of Child & Family Psychiatry, King Edward Medical University/Mayo Hospital, Lahore, Pakistan e-mail: [email protected] M.W. Azeem Albert J Solnit Children’s Center Yale Child Study Center, Yale University School of Medicine, Middletown, CT, USA e-mail: [email protected] V.B. Patel et al. (eds.), Comprehensive Guide to Autism, DOI 10.1007/978-1-4614-4788-7_152, # Springer Science+Business Media New York 2014

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Psychiatric Service Provision Including Child and Adolescent Mental Health Services Psychiatric services in Pakistan are limited to psychiatry departments in teaching hospitals or privately run clinics. Only around 200 psychiatrists and a handful of child psychiatrists are responsible for providing the much-needed services in a country which has one of the highest burdens of mental health disorders in South Asia (Khan 2006; Mumford et al. 2000). The problem is further compounded by the fact that although more than two-thirds of country’s population reside in rural areas, services are mainly located in the urban sector. Child mental health services in Pakistan are still in their infancy, and there are only few dedicated child psychiatry teams mostly in the provinces of Punjab and Sindh. These services are almost nonexistent in the remaining two provinces, Baluchistan and Khyber Pakhtunkhwa. Very few epidemiological studies have been conducted so far, looking at the prevalence of child psychiatric disorders and learning disabilities. A methodologically sound two-stage survey by Hussein et al. in 2011 found prevalence of emotional and behavioral problems to be around 17 % in 5–11 years old children in Karachi city schools, which is among the highest in the developing world.

Prevalence of Learning Disability and Autism in Pakistan While the prevalence of autism is on the rise in the developed world with current estimates of 1 in 110 children suffering from autism (CDC 2009), awareness and knowledge regarding the disorder has only begun recently in the last few years in Pakistan. As significantly higher rates of learning disabilities were found in many studies from Pakistan, it can be hypothesized that autism prevalence may also be much higher due to close association between the two disorders. A study with a cluster sample of 6,365 children found 6.5 % rates of mild mental retardation and 1.9 % of serious cognitive disability (Yaqoob et al. 1995; Bashir et al. 2002). An estimate of 19.0/1,000 children suffering from mental retardation/learning disability was also observed in Karachi (Durkin 1998). Nearly 16 per 1,000 children between 3 and 9 years of age suffer from severe mental retardation according to another research (Mubbashar and Saeed 2001). Morton et al. noted that Pakistani children had a slightly increased prevalence of autism (2.57/1,000) and cerebral palsy, along with higher rates of severe learning difficulties, as well as hearing and vision problems (Morton et al. 2002). Several possible causes like interfamily marriages, poor socioeconomic status, high rates of perinatal complications, and poor maternal and infant health services may contribute towards this much higher prevalence of learning disabilities. There is no reliable epidemiological data on the prevalence of autism spectrum disorder in Pakistan. Some studies which have been conducted either are hospital based or have been done in children with autism in special schools, and therefore it may be difficult to generalize the results to other settings. Results of some of these studies reporting autism in Pakistani children are summarized in Table 1.

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Table 1 Studies reporting autism in Pakistani children (methodological characteristics and key findings) Study Syed et al. (2007) Tareen et al. (2009) Sarwar et al. (2009) Imran et al. (2012)

Sampling frame Hospital based Rawalpindi Hospital based Karachi Hospital based Lahore Hospital based Setting Karachi

Sample size 290

Total number of new patients Male:female diagnosed with autism ratio 7(2.4 %) –

169

9(5.3 %)

1:1

200

9(4.5 %)

2:1

1,000

32(3.2 %)

2:1

This table lists some of the hospital-based studies conducted in various cities of Pakistan giving an idea about the frequency of children presenting with autism

Awareness of Autism Among Health-Care Professionals (HCP) in Pakistan It has been noted that one of the factors responsible for increase prevalence of autism worldwide is increased awareness of disorder among health-care professionals. While this may be true in the developed world, situation in Pakistan is rather bleak. Health-care professionals in Pakistan, with few notable exceptions, are not trained for early screening and diagnosis, as well as for early interventions. A recent survey in Karachi city reported that more than half of general practitioners had never heard the term “autism” (Rahbar et al. 2011). Absence of agreed-upon protocols regarding diagnosis and treatment means that autism is diagnosed in multiple settings by multiple professionals including pediatricians, psychiatrists, neurologists, psychologists, and speech and language pathologists, most of whom have little or no formal training in child psychiatry and developmental disorders (Khan et al. 2008; Hussein 2009). This contributes to wide variations in their knowledge and perceptions regarding the diagnosis, treatment, and prognosis of autism. It is also not uncommon in Pakistan for a parent to take the child to different health-care professionals and get different diagnosis as each professional views the child through their own specialty lens. Child with autism may end up getting the diagnosis of semantic-pragmatic language disorder, attention deficit hyperactivity disorder, learning disability, dysphasia, receptive-expressive language disorder, and obsessive-compulsive disorder, to name few, which further confuse the parents. Lack of adequate information conveyed to the parents also increases the promotion of interventions which are not evidence based. As a parent rightly pointed out, “although there haven’t been many workshops conducted about ABA, TEACCH, in Pakistan, there have been conferences about DAN and the nutritional side . . .affecting the autism, majority by the people who have no authentic knowledge, medical or any professional background and have charged thousands of dollars for that. There are a very few speech language pathologist, occupational therapist,

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psychologists and special educators, especially in Pakistan. . .parents have and still are pulling all their resources and going into debts behind these nutritional supplements thinking that some vitamins and chelations will recover the child. . .. and they will start going to a mainstream school” (Autism Meetup Group Pakistan – Web-based advocacy forum). Significant knowledge gap exists about autism with very few studies conducted so far assessing the baseline knowledge of autism among health-care professionals in Pakistan and the factors influencing it. The results are not encouraging (Rahbar et al. 2011; Imran et al. 2011).

Diagnostic Conceptualization of Autism Among Pakistani HealthCare Professionals Studies have noted that health-care professionals (HCP) in Pakistan have a reasonably accurate impression of DSM-IV TR diagnostic criteria of autism emphasizing the social deficits, communication difficulties, and restricted interests in children; however, they differ over the usefulness of individual characteristics in diagnosing autism (Table 2). Furthermore, HCP in Pakistan does not seem to consider the age of onset of symptoms which is hallmark of autism. It has also been noted that nonphysicians (psychologists, speech therapists) were more aware of the diagnostic criteria of autism as compared to physicians (general practitioners, pediatricians, psychiatrists, neurologists) (Imran et al. 2011).

Opinions of Pakistani Health Professionals Regarding Etiology of Autism Pakistani health-care workers are likely to attribute the etiology of the disorder to be parental neglect in early childhood and cold, aloof parenting. Confusion regarding autism being an emotional disorder has been noted as well (Imran et al. 2011; Rahbar et al. 2011) (Fig. 1). They also believe autism to be more prevalent in higher socioeconomic and educational groups. HCP in Pakistan are more likely to consider autism as a temporary disability and being preventable. Autism is also believed to be a precursor of schizophrenia by majority of HCP (Imran et al. 2011) (Fig. 2).

Opinion of Pakistani Health-Care Professionals Regarding Treatment Options More focus on psychopharmacological agents (including those not yet licensed for use in autism) has been observed among HCP with comparatively less focus on other evidence-based treatments like behavioral techniques, speech therapy, occupational therapy, and special education interventions (Imran et al. 2011).


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Table 2 Comparative percent rankings of characteristics as “necessary” for diagnosis of autism among physicians and nonphysicians group Physicians Rank Diagnostic characteristics 1 Social interaction difficulties 2 Lack of social responsiveness 3 Lack of eye contact 4 5

Language delays Rigid or stereotyped play activities

6

Onset of symptoms before 36 months Need for sameness, resistance to change in routines Unusual mannerisms such as finger flicking Peculiar speech characteristics Preoccupation with objects

7

8 9 10

Nonphysicians Percentage Rank Diagnostic characteristics 73.2 1 Social interaction difficulties 71.1 2 Lack of social responsiveness 68.0 3 Rigid or stereotyped play activities 65.4 4 Lack of eye contact 59.7 5 Need for sameness, resistance to change in routines 56.2 6 Language delays

Percentage 95.7 92.4 90.2 88.2 85.7

78.7

53.6

7

Preoccupation with objects

72.7

47.6

8

69.2

43.5

9

41.1

10

Peculiar speech characteristics Onset of symptoms before 36 months Unusual mannerisms such as finger flicking

59.1 54.9

This table lists the usefulness of various diagnostic characteristics considered as helpful by various health-care professionals in diagnosing autism in Pakistan. The table is from Imran et al. (2011), open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction

Factors Influencing Knowledge About Autism Among Pakistani Health-Care Professionals Medical Schools Medical school curriculum includes overall view of psychiatry with little or almost no emphasis on child and adolescent psychiatry. Five years of medical undergraduate training in Pakistan includes limited teaching about behavioral sciences and very limited exposure to psychiatric rotations. Most of medical students do not get exposure to childhood psychiatric and developmental disorders, including autism.

Postgraduate Training in Psychiatry and Pediatrics Including Psychiatric Subspecialties In Pakistan, the traditional postgraduate psychiatry training mainly focuses on general psychiatry with little emphasis on child and adolescent psychiatry training

Fig. 1 Comparison among physicians’ and nonphysicians’ affirmative responses regarding various beliefs about autism showing significant differences. General beliefs of healthcare professionals in Pakistan regarding autism with statistically significant difference between groups are shown. Various misconceptions were noted among both physicians (general practitioners, pediatricians, neurologists, and psychiatrists) as well as in nonphysicians (psychologists and speech therapists) (Data is from Imran et al. (2011) with permission from the authors).

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Fig. 2 Comparison among physicians’ and nonphysicians’ affirmative responses regarding various beliefs about autism showing nonsignificant differences. General beliefs of healthcare professionals in Pakistan regarding autism with nonsignificant difference between groups are shown. Various misconceptions were noted among both physicians (general practitioners, pediatricians, neurologists, and psychiatrists) as well as in nonphysicians (psychologists and speech therapists) (Data is from Imran et al. (2011) with permission from the authors)

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(Rana et al. 2008). Psychiatry postgraduate training in Pakistan is a 4-year training program, with no separate subspecialty training for child and adolescent psychiatry or learning disability. Similarly, postgraduates in pediatrics do not have any mandatory rotations in neurodevelopmental centers or special education institutions, leading to various misconceptions among physicians regarding social and cognitive aspects of autism. Lack of infrastructure for autism research in Pakistan means no epidemiological studies regarding prevalence of autism and service needs.

Allied Professionals Department of clinical psychology and special education at university level in Pakistan are well established, offering numerous 4–5-year programs with exposure and internships at neurodevelopmental centers, special education schools, and special emphasis on child psychology in their curriculum. This may contribute to the allied health-care professionals being more aware of the typical presentation and diagnostic criteria of autism observed in previous study from Pakistan (Imran et al. 2011). There is no accredited postgraduate training for psychiatric social work or child psychiatry nursing.

Continuous Medical Education (CME) Pakistan does not have mandatory CME programs or requirements in any area including child and adolescent psychiatry; thus lifelong learning for health-care professionals is not ensured. This leads to various current misbeliefs about autism which were present in 1950s, like autism being related to cold parents and being related with schizophrenia.

Discrepancy Among Services in Urban Versus Rural Areas in Pakistan More than two-thirds of Pakistan’s population live in rural areas, majority of whom have no access to specialty services and mental health-care professionals. Very few trained health-care workers and special schools exist which translates into delay in diagnosis and treatment for children with autism. This also leads to lack of awareness among HCP regarding autism especially in rural settings.

Workforce Issues In Pakistan, health-care services are delivered by several systems coexisting together with little regulation. The system in place is mainly hospital based with


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community services being almost nonexistent. There are few hundred psychiatrists and very few child psychiatrists. These professionals deal with intellectual disability and autism without any formal training. Family physicians are filling the gap in service provision created by lack of specialist services and trained professionals, but they themselves have little or no exposure to autism in their training.

Cultural and Societal Issues: Role of Religious Scholars and Faith Healers As mental health services in Pakistan face many challenges, parents of children with intellectual disability and autism commonly consult traditional faith healers and religious scholars to seek cure and explanation. Very aggressive children with mental retardation/autism are sometimes chained up or locked up in some spiritual settings rather than managed by health professionals.

Myths About Use of Psychotropic Medications Although medicines have been proven to be helpful in managing behavioral symptoms of autism, there are numerous misconceptions among health-care professionals regarding medicines either being cure for autism or being addictive. Lack of CME activities and training contributes towards limited knowledge regarding psychotropic medication indications and side effects and lack of regular monitoring in this vulnerable group of children.

Stigma Associated with Diagnosis Psychiatry in Pakistan is still not appreciated as a health-care service (Karim et al. 2004). Stigma attached to psychiatry and special education needs deter parents from seeking help. Health professionals at times are reluctant to make diagnosis because of fear of labeling the child.

Future Directions There are a number of factors and aspects to consider in improving the services for children and families with autism spectrum disorder in Pakistan (Fig. 3). 1. Training: There needs to be postgraduate training in child and adolescent psychiatry with special focus on autism spectrum disorders (ASD) and other developmental disorders. The training should include didactic learning regarding ASD and exposure to a wide array of children and adolescents with ASD and developmental disabilities. Core training in diagnosis and management of ASD

2492 Fig. 3 Future directions for improving services for autism in Pakistan. Framework for improving services for children and families with autism spectrum disorder in Pakistan is given


Emphasis on child developmental disorders in medical curriculum Development of autism resource centres

Early intervention services Future directions for improving services for ASD in Pakistan Public awareness campaigns

School services

Support groups for caregivers

and mentoring by senior professionals in this field are essential for future improvements in this field. 2. Medical School Curriculum: Medical students should be exposed to learning in normal child development, along with mentoring opportunities by senior physicians in this field (Sawyer et al. 2008). There needs to be opportunities for medical students to rotate in clinics where they can have exposure to child and adolescent mental health including children and families with ASD. This will also provide opportunities to attract medical students in this much-needed area of expertise. 3. General Practitioners: General practitioners, including internists, family physicians, and pediatricians, are on front line in seeing children with ASD. These professionals have almost no training in child and adolescent mental health. Different training opportunities and educational conferences on ASD will improve the knowledge and enhance the care for children and families with these issues. Various models for collaboration between primary care providers and child psychiatrists have been proposed in the Western world (Sarvet and Wegner 2010). Primary care physicians having access to colleagues for consultations in the field of child and adolescent psychiatry in Pakistan can play an important role in improving services and enhancing care of these children and families in most need, although it is important to keep in mind that the number of trained child and adolescent psychiatrists in Pakistan is nominal. Rahber et al. reported that general practitioners in Karachi city, who had psychology and


4.

5.

6.

7.

8.

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pediatrics training/ward rotations, were found to be more knowledgeable about autism (Rahbar et al. 2011). Services in Schools: Pakistan at present is lacking services for children and adolescents with ASD in the school systems. There is very little concept of individualized education programs for the children with autism. At times, due to unavailability of the services in schools, some of these children get stuck at their homes and do not receive any kind of education. The country needs to develop specialized school programs geared towards these children and families’ needs, which are flexible and strength based (Azeem and Imran 2007). There should be emphasis on educators, administrators, and teachers to receive training, experience, and mentoring in working with children and adolescents with ASD. Some of the effective language therapies and successful social skills services are curriculum based and are part of individualized treatment plans implemented in school (Realmuto and Azeem 2008). Early Intervention Services: Studies have shown that early intervention in autism can improve the prognosis markedly (Rogers and Vismara 2008). Pakistan is lacking a system where children can be identified for early intervention services like speech therapy, occupational therapy, and behavioral interventions. Country needs to develop early intervention centers across the cities as well as rural areas across the nation to provide this valuable service for these children and families in most need, which can then lead to positive outcomes. Services for Adults with ASD: Currently, the services for adults with ASD are nonexistent in Pakistan. Some adults with ASD, especially with Asperger syndrome and high-functioning autism, can function independently in certain environments. In Pakistan, many families are faced with challenges about providing nurturing and safe environment for their adult children with ASD. It will be imperative to look at building sheltered workshops, vocational services, appropriate living arrangements, and support for these individuals and families (Hendricks 2010; Howlin 2005). Support Groups for Caregivers: Organized support groups for caregivers and families can play an enormous role in providing education and support for these families who have children with ASD. Pakistan has web-based support group named “Pakistan Autism Meetup Group” which has held sessions in cities like Karachi, Lahore, Islamabad, and Quetta. Since the need is so high, there needs to be many more organized support groups to be arranged by schools, universities, and nongovernmental organizations (NGOs) across the country. Public Awareness: In Pakistan, there is social stigma about ASD and other developmental disorders. Some families do not feel comfortable in exposing their children to the relatives and friends. There is no governmental, educational, or public policy regarding ASD and developmental disorders. Media, including TV, internet, radio, and newspaper, play an important part in the lives of people. There needs to be well-organized media campaign regarding ASD to increase public awareness, which will also help in decreasing stigma regarding these children and youth. Schools, hospitals, universities, NGOs, and government institutions need to organize educational

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symposiums and other activities to increase public knowledge and understanding about these developmental conditions.

Conclusion Future research is needed to define the magnitude of the issues related with autism spectrum disorder in Pakistan. It is also important to assess diagnostic practices of autism in cultural context to gain broader understanding of this complex disorder. Furthermore, childhood developmental disorders and intellectual disability need more attention from the policy makers in Pakistan to ensure early diagnosis and timely interventions and thus ultimately improving the prognosis for children and families.

Key Terms Health-Care Professionals. These include doctors, nurses, and allied professionals like psychologists, speech therapists, and occupational therapists who are responsible for health-care delivery. Prevalence. This helps to assess the magnitude of a problem in order to identify the service needs. Learning Disability. Term broadly used for people with impairment of skills that overall contribute towards intelligence and limited adaptive level of functioning. Psychotropic Medications. It broadly describes medications used in treatment of psychiatric disorders like antipsychotics, antidepressants, and mood stabilizers. Applied Behavior Analysis (ABA). One of the behavioral approaches to promote skills that support normal development in children with ASD.

Key Facts Table 3

Summary Points • Inadequate information about the prevalence of autism and magnitude of unmet needs are major barriers in providing services for these children and families in most need in Pakistan. • Autism is diagnosed in multiple settings and by multiple health-care professionals. • Numerous misconceptions regarding diagnosis, developmental, cognitive, and prognostic aspects of autism have been observed among health-care professionals in Pakistan.


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Table 3 Key facts about services regarding autism spectrum disorder in Pakistan There are limited diagnostic and rehabilitative services for autism, even in major cities of Pakistan Lack of early intervention centers across the country translates into delay in diagnosis and treatment Autism diagnosis is made by numerous health-care professionals in various settings in the absence of an agreed protocol Due to lack of inclusive settings in schools for children with ASD, majority of these children either do not receive any education or get admission in special schools “Pakistan Autism Meetup Group” is a web-based support group for the caregivers of people with autism spectrum disorder in Pakistan This table gives an overview about the limited availability of diagnostic and treatment services as well as caregiver support networks for autism in Pakistan

• Inadequate exposure of medical students and allied professionals to autism, absence of mandatory continuous medical education activities, workforce issues, and stigma attached with diagnosis are some of the salient factors influencing knowledge about autism among the health-care professionals. • A number of factors and aspects need to be considered in improving the services for children and families with autism spectrum disorder in Pakistan.

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