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 Table of Contents    
CLINICAL PRACTICE GUIDELINES  
Year : 2019  |  Volume : 61  |  Issue : 8  |  Page : 254-269
Clinical practice guidelines for autism spectrum disorders


1 Associate Professor, Autism Dynamic Interventions, Department of Psychiatry, TNMC & BYL Nair Ch. Hospital, Mumbai, Maharashtra, India
2 Senior Consultant Psychiatrist, Medica Superspecialty Hospital, Kolkata, West Bengal, India
3 Hon. Psychiatrist, Jagjivanram Hospital & Consultant Psychiatrist, Mumbai, Maharashtra, India
4 Consultant Psychiatrist, P.D. Hinduja National & Hinduja Healthcare Hospitals, Mumbai, Maharashtra, India

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Date of Web Publication14-Jan-2019
 

How to cite this article:
Subramanyam AA, Mukherjee A, Dave M, Chavda K. Clinical practice guidelines for autism spectrum disorders. Indian J Psychiatry 2019;61, Suppl S2:254-69

How to cite this URL:
Subramanyam AA, Mukherjee A, Dave M, Chavda K. Clinical practice guidelines for autism spectrum disorders. Indian J Psychiatry [serial online] 2019 [cited 2019 Dec 13];61, Suppl S2:254-69. Available from: http://www.indianjpsychiatry.org/text.asp?2019/61/8/254/250040





   Introduction Top


These guidelines have been framed after an amalgamation of expert guidelines across the globe, and existing practices in India, as outlined by experts in the field. Due to the lack of systematic research in the field of autism in India, the evidence of the said practices is not documented, which becomes a limitation of these guidelines. The good part is that India has an indigenous tool for assessment, which has been recommended by the Government of India, which we have attached as an Appendix 1.

Autism has till date always been viewed as an illness from the medical model, and hunt for a “cure” has been the norm. With the increase in awareness and available therapies, the focus shifted to disability and inclusion. However, as more autistic individuals express themselves and their needs, the focus now has shifted from the medical model to the social model of neurodiversity, thereby implying that autism is actually a variant of normal human development and human diversity. The next decade will probably see how best the two paradigms can be aligned to destigmatize and integrate autistic individuals into society at large.

Keeping the above in mind, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) shifted from grouping the disorders as separate diagnoses under the umbrella of pervasive developmental disorders (PDDs) to conceptualizing them as all members of the broader category of known as autism spectrum disorder (ASD). The number of core domain deficits was reduced to two (social communication and repetitive behavior). ASD would now be diagnosed when a patient demonstrated at least three symptoms in the domain of social communication and at least two symptoms of restricted interests/repetitive behaviors; including an added behavior of hyper-or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment [Table 1].
Table 1: Diagnostic and statistical manual of mental disorders -IV-TR versus diagnostic and statistical manual of mental disorders -5

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   Major Changes to the Diagnostic and Statistical Manual of Mental Disorders-5, Autism Diagnostic Criteria Top


  • Category name changed from PDDs to ASDs
  • The inclusion of sensory differences in criteria
  • Recommendation to identify “specifiers” to better understand the individual needs of each child with ASD (cognitive and language ability, level of supports needed, co-occurring medical and mental health conditions, catatonia)
  • The inclusion of co-occurring mental health disorders (e.g., attention-deficit/hyperactivity disorder).


The International Classification of Diseases-10th version (ICD-10), still used the term PDD. What is interesting is that the proposed changes in ICD-11 have not only changed the nosology to ASD but have also included intellectual development and functional language, which is closer to the clinical picture, and also is in keeping with the concept of neurodiversity.

At a glance, when we compare these classificatory systems, below are the changes we can see [Table 2].
Table 2: Change in the classification of autism

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Thus with the above inclusions, the numbers are bound to increase. The latest statistics state that the prevalence of ASD, is now estimated at 1 in 68, more in males, (Centre for Disease Control National Center on Birth Defects and Developmental Disabilities, USA, 2014), which is alarming rise from 1:500 less than a decade ago. The possible reason for this is increase in the number of copy number variation and gene variations. Multiple genes seem to be involved. These genes are responsible for synaptic plasticity, synaptic scaffolding proteins, receptors, cell adhesion molecules or proteins that are involved in chromatin remodeling, transcription, protein synthesis or degradation, or actin cytoskeleton dynamics. For example, Genes for neuroligins, SHANKs, CNTNAP2, FMR1 to name a few.

On analysis of neuronal growth and pathways cortico-striato-thalamo-cortical circuits (for repetitive behaviors), ventral tegmental area connectivity to nucleus accumbens (for social interaction), and amydala to ventral hippocampal connectivity (for social interactions) are areas of active interest and study. The validity of the same, and the translation into structural diagnostic neuro-imaging is yet to be established, and hence limits the use of the same.

Similarly, functional neuropathology reveals excessive synapses due to a slow pruning process. However, diagnostic modalities to ascertain the same are yet awaited.


   Process of Assessment Top


Autism being a complex disorder, the assessment should as far as possible be done by multidisciplinary team who besides the psychiatrist should include a psychologist, a special educator, an occupational therapist, and an audiologist and speech therapist [Figure 1]. In the western world, educational psychologists in school settings double up for the assessment of cognition and curricular level too. Furthermore, it is good to keep the child's pediatrician in the loop, to ensure that any physical comorbidities are handled effectively too.
Figure 1: Approach to assessment of autism

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Beyond longitudinal changes in ASD symptoms, the assessment of co-occurring physical and mental health conditions, is essential to providing quality care. Clinicians must actively ask about signs and symptoms of these conditions. Rule-out other conditions (e.g., hearing impairment), evaluate for co-morbid conditions (e.g., seizures), and search for underlying etiology (e.g., genetic syndrome). A medical history (birth, current health, and family history), physical examination (growth, dysmorphic features, neuro, and skin evaluation) and audiological evaluation, genetic testing (chromosomes, fragile x, microarray), and other optional investigations such as electroencephalography, brain imaging, metabolic testing, as appropriate might be useful depending on the nature of the case. The above approach helps to delineate essential versus complex autism, when it comes to overall management and prognosis, as well as gives us a base on which to approach and psycho-educate the parents.

The Ministry of Social Justice and Empowerment (Department of Empowerment of Disabilities) released the INCLEN Tool for the assessment of ASD on April 25, 2016, to be uniformly followed for the assessment of autism in India. Inbuilt in the tool, is a scale called Indian Scale for assessment of Autism, which not only gives cutoff scores but also severity indices and percentage disability, which helps certify (detailed later) and is in keeping with the new Rights of Persons with Disability Act.

The American Academy of Pediatrics recommends that all children be screened for developmental delays and disabilities during regular well-child doctor visits, namely, at 9 months, 18 months, 24 or 30 months. The American Association for Child and Adolescent Psychiatry recommends ASD surveillance at all developmental and psychiatric assessments of children, ASD-specific screening Modified Checklist for Autism in Toddlers (e.g., M-CHAT) at 18 and 24 months visits or when surveillance raises concern. If the screening indicates significant ASD symptomatology, a thorough diagnostic evaluation is essential. Evaluation should include multi-disciplinary assessment with the clinician coordinating it. Diagnostic instruments commonly used: Autism Diagnostic Observation Schedule (ADOS), Autism Diagnostic Interview, and Diagnostic Interview for Social and Communication Disorders. The use of such instruments only supplement, but not replace informed clinical judgment. Early screening, however, is recommended to intervene early [Table 3] and [Table 4].
Table 3: Early symptomatic biomarkers for detection of autism

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Table 4: Modified checklist for autism in toddlers revised scoring

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The M-CHAT-R can be administered and scored as part of a well-child care visit, and also can be used by specialists or other professionals to assess risk for ASD. The primary goal of the M-CHAT-R is to maximize sensitivity, meaning to detect as many cases of ASD as possible. Therefore, there is a high false positive rate, meaning that not all children who score at risk will be diagnosed with ASD. To address this, we have developed the follow-up questions (M-CHAT-R/F). Users should be aware that even with the follow-up, a significant number of the children who screen positive on the M-CHAT-R will not be diagnosed with ASD; however, these children are at high risk for other developmental disorders or delays, and therefore, evaluation is warranted for any child who screens positive


   Scoring Algorithm Top


For all items except 2, 5, and 12, the response “NO” indicates ASD risk; for items 2, 5, and 12, “YES” indicates ASD risk. The following algorithm maximizes psychometric properties of the M-CHAT-R:

Low-risk

Total score is 0–2; if the child is younger than 24 months, screen again after the second birthday. No further action required unless surveillance indicates risk for ASD.

Medium-risk

Total score is 3–7; Administer the follow-up (second stage of M-CHAT-R/F) to get additional information about at-risk responses. If the M-CHAT-R/F score remains at 2 or higher, the child has screened positive. Action required: Refer child for diagnostic evaluation and eligibility evaluation for early intervention. If the score on follow-up is 0–1, child has screened negative. No further action required unless surveillance indicates risk for ASD. The child should be rescreened at future well-child visits.

High-risk

Total score is 8–20; it is acceptable to bypass the follow-up and refer immediately for diagnostic evaluation and eligibility evaluation for early intervention.

For assessment, the common tools used are screening tools and diagnostic tools.

Screening tools

Screening tools are designed to help identify children who might have developmental delays. It can be specific to a disorder (for example, autism) or an area (for example, cognitive development, language, or gross motor skills), or they may be general, encompassing multiple areas of concern. Screening tools do not provide conclusive evidence of developmental delays and do not result in diagnoses. A positive screening result should be followed by a thorough assessment. Screening tools do not provide in-depth information about an area of development

Diagnostic tools

Many diagnostic tools are available to assess ASD in young children, but no single tool should be used as the basis for diagnosis. Diagnostic tools usually rely on two main sources of information--the parents' or caregivers' descriptions of their child's development; and a professional's observation of the child's behavior. In some cases, the primary care provider might choose to refer the child and family to a specialist for further assessment and diagnosis. Such specialists include child psychiatrists, geneticists, neurodevelopmental pediatricians, and early intervention programs that provide assessment services [Table 5].
Table 5: Summary of selected assessment instruments for autism spectrum disorder

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Alternatively, information can be obtained from caregivers about the child's ASD symptoms using questionnaires. The two most commonly used are the Social Responsiveness Scale (SRS, SRS-2) and the Social Communication Questionnaire.


   Additional Elements of Autism Spectrum Disorder Assessment Top


In accordance with DSM-5 specifiers, some features related to ASD require additional assessment, including the presence of cognitive or language impairment (or both). Abilities in these areas can range from severely impaired to advanced. The presence of developmental delays or co-occurring diagnoses, such as attention deficit and hyperactivity disorder (ADHD), in addition to ASD symptoms, may add complexity to the diagnostic assessment process. Given these complexities, cognitive and language assessments and consideration of comorbid emotional and behavioral disorders are recommended for all patients with ASD.

ADHD particularly becomes a very important co-morbidity and confounding factor with ASD. Prevalence of ADHD symptoms in individuals with a primary clinical diagnosis of ASD has been reported to be between 13% and 50% in the general population. When in doubt, the symptoms can be treated, and a diagnosis can be made later. This particularly holds true for those who have high functioning autism (previously Asperger's) and hyperactivity.

Similarly, it is difficult to differentiate between intellectual disability and ASD at times, and the comorbidity is very high, around 30%–45%. Besides, there are hardly any tests which can accurately assess cognitive ability and intellect in autism. Hence, whenever in doubt, a period of serial evaluation and observation helps in reaching the final diagnosis. The ASDs-comorbidity for adults (ASD-Ca), 84 item scale designed to look at comorbid psychopathology in adults with as an intellectual disability.


   Differential Diagnosis Top


Most of the time, inputs from members of the multi-disciplinary team will help lead to the diagnosis of autism. However, at times, it becomes difficult to differentiate autism from other conditions. Hence, the following are important to keep in mind while assessing the individual [Table 6].
Table 6: Differential diagnosis of autism spectrum disorder

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A differential diagnosis for specific core domains becomes easier to approach, rather than trying to establish a differential for the disorder as a whole. This helps avoid both over-diagnosis and under-diagnosis.


   Approach to Treatment Top


Just as the ideal assessment for autism is multi-disciplinary, so too, approach to treatment involves a multi-sensory, multi-disciplinary approach. Early intervention should be the aim to yield the best outcome and results.

Despite advances in early diagnosis and intervention, efficacious reversal of core autistic symptoms is still not accomplished, to date.

Treatments include a range of behavioral, psychosocial, educational, medical, and complementary approaches. The options vary by age and developmental status.

Chronic management is often required to maximize functional independence and quality of life by minimizing core deficits in social skills and communication, facilitating development and learning, promoting socialization, reducing maladaptive behaviors, and educating and supporting families.

The treatments can be broadly divided into the following:

Non-pharmacological treatments

These form the mainstay of approaches toward autism. These may be divided into:

Structured educational and behavioral interventions

  1. Early-stage Denver model – This aims to accelerate children's development in all domains; intervention targets derived from the assessment of developmental skills; stresses social-communicative development, interpersonal engagement, imitation-based interpersonal development, and social attention and motivation
  2. Applied behavioral analysis (ABA) – ABA is probably the most widely used intervention for children as well as adults with autism. It focuses on improving specific behaviors initially using discrete trials to teach simple skills, then progressing to more complex skills and complex behaviors. It is helpful in a wide variety of skills, namely, social skills, communication, reading, and academics as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities, punctuality, and job competence. ABA is effective for children and adults with psychological disorders in a variety of settings, including schools, workplaces, homes, and clinics. It has also been shown that consistent ABA can significantly improve behaviors and skills and decrease the need for special services. Ideally, more than 20 h per week, under the age of 4 is recommended. ABA also helps in minimizing negative behaviors. In autistic adults, ABA can help with memory, relationships and cognitive strength
  3. Social communication, emotional regulation, and transactional support – This is an educational model which uses practices from other approaches, including ABA, TEACCH, floortime and relationship development intervention (RDI). The social communication, emotional regulation, and transactional support (SCERTS). Model differ most notably from the focus of ABA, by promoting child-initiated communication in everyday activities. SCERTS is the most concerned with helping children with autism to achieve progress, which is defined as the ability to learn and spontaneously apply functional and relevant skills in a variety of settings and with a variety of partners.


The acronym SCERTS refers to the focus on:

  • SC: Social Communication-Development of spontaneous, functional communication, emotional expression and secure and trusting relationships with children and adults
  • ER: Emotional Regulation-Development of the ability to maintain a well-regulated emotional state to cope with everyday stress, and to be most available for learning and interacting
  • TS: Transactional Support-Development and implementation of supports to help partners respond to the child's needs and interests, modify and adapt the environment, and provide tools to enhance learning (e.g., picture communication, written schedules, and sensory supports).


Specific plans are also developed to provide educational and emotional support to families, and to foster teamwork among professionals.

Developmental interventions

These include therapies that focus on building emotional relationships, fostering social communication, and building social skills. Most commonly practiced are:

DIR/Floortime-Developmental, individual difference, relationship-based and RDI-Relationship development intervention

Interventions for communication

Use of communication modalities such as sign language, communication boards, visual supports, picture exchange communication system (PECS), use of social stories, and social skills training. The latter three are more commonly used strategies, with some degree of effectiveness.

The PECS, allows people with minimal or no verbal abilities to communicate using pictures. An individual using PECS is taught to approach another person and give them a picture of the desired item in exchange for that item. This thus forms a means of communication. A child or adult with autism can use PECS to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. PECS works well in the home or in the classroom.

A Social Story accurately describes a context, skill, achievement, or concept according to specific defining criteria. These criteria guide the author to ensure an overall patient and supportive quality, a format, “voice,” content, and learning experience that is descriptive, meaningful, and physically, socially, and emotionally safe for the child, adolescent, or adult with autism. For more advanced communication or older children, social articles may be used.

The core of autism is the lack of social skills and an inability to understand social nuances and graces. Social skills training provides a graded, stepwise approach to train a child in the simplest of socially expected behavior, to facilitate friendships in the real world, which become a challenge for a person with autism.

Educational assistance

Structural educational approach with explicit teaching and formulation of individualized education plans is important for every child with autism.

TEACHH – Treatment and education of Autistic and related Communication-handicapped Children. It involves an array of teaching or treatment principles and strategies based on the learning characteristics of individuals with ASD, including strengths in visual information processing, and difficulties with social communication, attention, and executive function. Structured TEACCHing is not a curriculum, but instead is a framework to support the achievement of educational and therapeutic goals. This framework includes:

  1. Physical organization
  2. Individualized schedules
  3. Work (Activity) systems
  4. Visual structure of materials in tasks and activities.


The goal of Structured TEACCHing is to promote meaningful engagement in activities, flexibility, independence, and self-efficacy.

Sensory integration

Occupational therapists use sensory integration therapy to help a child with autism play like other children. Sensory integration therapy involves placing a child in a room specifically designed to stimulate and challenge all of the senses. Sensory integration therapy is based on the assumption that the child is either overstimulated or understimulated by the environment. Therefore, the aim of sensory integration therapy is to improve the ability of the brain to process sensory information so the child will function more adaptively in his/her daily activities.

Others

Some evidence of CBT for anxiety and anger management in the high functioning youth with ASD

Animal-assisted therapy, particularly the use of trained dogs, has been gaining increasing popularity. The premise that a nonverbal bond with the animal, can facilitate the release of oxytocin, and thereby improve social skills and bonding, as well as build empathy; forms the basis of this therapy [Table 7].
Table 7: Overview of Non-pharmacological approaches for ASD

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Pharmacological treatments

Medication is indicated if the child is unresponsive to nonpharmacological intervention or when the behavior has a negative impact on functioning. In cases when the problem behavior is responsive to medication, it is with the understanding it is symptomatic treatment, not a cure and not a substitute for appropriate behavior and education programming.


   Medications Commonly Used in Autism Include Top


  • Antipsychotics (conventional and atypical)
  • Stimulants
  • Antidepressants- Selective Serotonin Reuptake Inhibitors
  • Alpha 2 agonists
  • Anticonvulsants and mood stabilizers
  • Antianxiety and benzodiazepines
  • Sleep medication.



   Recent Update of Pharmacotherapy in Children and Adolescents With Attention Deficit Disorder Top


Atypical antipsychotics, particularly risperidone and aripiprazole, are effective in reducing irritability, stereotypy, and hyperactivity. Methylphenidate is effective in reducing ADHD symptoms.

Atomoxetine and alpha-2 agonists appear effective in reducing ADHD symptoms. Selective Serotonin Reuptake Inhibitors (SSRI's) are not effective in improving repetitive behaviors in children with ASD, and in fact, frequently cause activating adverse events. Efficacy of antiepileptic drugs is inconclusive. Newer agents, including glutamatergic agents and oxytocin, appear promising albeit with mixed results.

Serious behavioral disturbance (irritability) involving severe tantrums, aggression, and self-injury is frequent in ASD. A multimodal approach is used in the management of irritability in ASD. Individuals with mild irritability may benefit from treatment with an α-2 adrenergic agonist. Risperidone and aripiprazole are the only two FDA–approved atypical antipsychotics medications for irritability in children and adolescents with autism. Evidence to date has been mixed regarding the effectiveness of other pharmacologic agents for irritability in ASD. Research into the pharmacotherapy of serious behavioral disturbance is needed to develop more effective and better-tolerated treatments.


   Expert Opinion Top


  • Psychopharmacological treatment of core and associated symptoms in ASD is challenging [Table 8] and [Figure 2]
  • Currently, risperidone and aripiprazole are the only medications
  • They have been (relatively) reliably, shown to help treat certain symptom clusters associated with ASD, namely severely disruptive behavior and hyperactivity
  • Recent studies have begun to look at medications with mechanisms that are novel in the treatment of ASD like the glutamate-modulating agents
  • Overall, randomized, placebo-controlled studies of medications for the treatment of ASD are scarce.
Table 8: Selected published double-blind, placebo-controlled trials in Autism spectrum disorder

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Figure 2: A target symptom approach to pharmacotherapy of autism spectrum disorder. SSRI: Selective serotonin reuptake inhibitors, NT: Not tolerated

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   Psychopharmacology Adverse Effects Top


Psychopharmacological agents used in the management of various issues in children with ASD are associated with a number of adverse effects. A summary of the common adverse effects can be seen in [Table 9].
Table 9: Common Adverse effects of drugs used for autism spectrum disorder

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   Psycho-Education for the Family Top


It can be very challenging to break the diagnosis to parents when their child has ASD. A few points to be kept in mind while informing them are:

  • Autism is a neuro-developmental disability
  • It is lifelong
  • It starts in utero
  • It is not produced by vaccines
  • It is not caused by bad parenting
  • All children may not be similar
  • Early therapy helps
  • Education may not be the only aim
  • Talk to others about ASD openly
  • Talk to other parents of children with ASD
  • The path ahead may be difficult, but reach out for help at every step of the way
  • Furnish examples of individuals with ASD [Table 10].
Table 10: Overview of recommendations in the management of autism spectrum disorder

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   Special Issues Top


  1. Distress, anxiety, and agitation in ASD [Figure 3]
  2. Mood disorders in autism spectrum disorder [Figure 4].
Figure 3: Management of distress, anxiety and agitation in autism spectrum disorder. Patients with autism spectrum disorder may require much lower or much larger doses than commonly prescribed thus individual titration of dose is a must

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Figure 4: Management of mood disorders in autism spectrum disorder

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Mood disorders and autism spectrum disorder: Feeding disorders

Feeding issues are common in children with ASD. These include:

  • Poor eating schedules
  • Poor eating skills
  • Poor nutrition
  • Preference for specific foods
  • Weight gain.


There is an overlap of the phenomenology of ASD in girls suffering from Anorexia Nervosa. This is an area of further study that may help in understanding the individual and combined trajectories of these disorders [Figure 5].
Figure 5: Management of feeding disorders in children with autism spectrum disorder

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Recommendation

Sleep issues – Sleep issues are common in children with ASD. These include:

  • Insomnias (Initial, middle, terminal)
  • Sleep-wake cycle abnormalities.


Impairment in the circadian rhythms is associated with Melatonin functioning. Melatonin, as treatment for sleep issues in ASD, has been found to be effective in numerous studies.

  • Dose requirements: 1–10 mg hs
  • Very few mild and transient side effects may be seen
  • Low risk of seizure precipitation.


Risperidone, clonazepam, and clonidine may also be of benefit in sleep disorders in individuals with ASD.

Other issues that may be of importance

  1. Personality disorders: DSM 5 has made it possible to diagnose personality disorders in adolescence. This will facilitate early recognition of and intervention for personality disorders. Personality disorders may be comorbid with ASD. However, the relation between the two is very complex. Personality disorders like Schizotypal PD have a significant overlap with the symptomatology of ASD.


  2. Studies are needed to understand the outcome of a comorbid personality disorder with ASD. A dual morbidity severely impacts executive, social and vocational functioning.

    • Intervention – Psychotherapies, Medication (as necessary).


  3. Schizophrenia – Both ASD and Schizophrenia have been conceptualized as neurodevelopmental disorders, and share many phenotypical patterns. Recent studies have shown the rates of co-occurrence between ASD and Schizophrenia to be highly variable (0%–50%–60%). There is an urgent need to develop specific tools to diagnose these two disorders, and further, develop intervention strategies for them.


Gender dysphoria and autism spectrum disorder

Multiple studies show that individuals with ASD were significantly more likely to report experiencing gender-dysphoric symptoms than were typically developing individuals.

Why could gender dysphoria be more prevalent in ASD?

  1. Hormonal factors Foetal testosterone (fT) strongly contributes to sexually dimorphic cognition and behavior
  2. Elevated levels of prenatal testosterone might predispose the male fetus to homosexuality
  3. The relationship between the anti-Mullerian Hormone and ASD, where lower levels of AMH have been associated with ASD symptoms in males. It is believed to play a role in the masculinization of, or the defeminization of the male fetus.


These have a huge potential for future research and diagnostic potential.

Certification and insurance

Certification is necessary to quantify disability, avail of the benefits from the various schemes, and qualify for insurance.

  • Disability assessment should be done using INCLEN tools and India Scale for Assessment of Autism (ISAA), following a clinical diagnosis of ASD using DSM 5 or ICD 10 or other prevalent criteria
  • Various other schemes available to autistic individuals are Niramaya (Insurance), Aspiration (Early intervention), and GyanPrabha (scholarship)
  • According to the Government guidelines have requested state governments to constitute certification medical boards immediately. The appropriate government shall constitute Autism Certification Medical Board comprising of a Pediatrician/Pediatric neurologist, a clinical Psychologist or Rehabilitation Psychologist, and a Psychiatrist. Further, it is stated that the certificate should be valid for 5 years for individuals <18 years of age with temporary disability; and for those who have acquired a permanent disability, should receive “permanent” validity on their certificates.


Travel

  • Certification for ASD may be necessary for availing concessions by various travel authorities– buses, trains, air travel. This is important for both local and distance traveling
  • Considering the symptomatology of ASD like the inability to tolerate change, thorough planning for picnics and excursions will be needed. It will also be helpful if the child is repeatedly reminded of the event so that they are prepared. Specifics regarding food and clothing should also be considered
  • Use of pictures or a scrapbook can be very useful to prepare a child beforehand for the trip
  • At times, particularly for long journeys or change in altitude, one may prescribe a small dose of an anxiolytic or an anti-histaminic like promethazine.


Planning another child

Parents are often in a dilemma about whether or not to have a second child when the first has been diagnosed on the spectrum. The tussle lies between the energy required for a child with special needs and the hope of having a child with regular needs. Unfortunately, genetic studies and robust evidence is lacking in the area. Studies were done to estimate the risk to be between 3% and 10%, and more recently, up to 20% for a second child; when the first has received a diagnosis of ASD. The broadening of the spectrum, could be an additional contributory factor to these elevated figures. Nevertheless, infant screening and genetic counseling are advisable, for such families.

Care after parents

Caring for a child with ASD can be an extremely difficult and challenging task for parents. A permanent worry faced them is the fate of their child as she grows up to be an adult, and their future care after their passing away.

Newer concepts that have come up to address such difficult issues are:

  • Lifespan-Carers– Individuals who are well versed with ASD in its totality, and the manner in which it affects the individual at all levels of functioning. They can provide help at various crucial points to individuals with ASD, throughout their lifespan
  • Positive behavior support it is based on the principles of applied behavior analysis, inclusion movement, and personalized values
  • Multidisciplinary teams consisting of professionals, family members, friends, neighbors, social workers, and volunteers can ensure care and support to an individual at all times
  • Strong support from parents groups like Forum for Autism, Action for Autism, etc., These also help deal with caregiver distress and burn out by forming a support network for the parents themselves as well
  • Recently, built centers for assisted living for autistic individuals in Gurgaon, Hyderabad, and Bengaluru to name a few, have given some hope to worried parents as to what after them.


Continued efforts are needed in a multicultural society like India to provide long-term care for individuals suffering from ASD.


   Non Evidence-Based Treatments Top


As stated by the FDA, there is no “cure” for autism, and any treatment claiming to be curative can be treated as a lie. Autism is a lifelong disorder which responds to intervention over a period of time, but does not disappear.

It is thus recommended that one should educate parents about the following:

  1. Be suspicious of products that claim to treat a wide range of diseases
  2. Not accept personal testimonials as a substitute for scientific evidence
  3. Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix”
  4. So-called “miracle cures” which claim scientific breakthroughs or contain secret ingredients, are usually a hoax.


A list the therapies which have poor evidence often can be exorbitant, to some extent even prohibitive in cost and thus not recommended are:

  1. Stem cell therapy
  2. Hyperbaric oxygen therapies
  3. Detoxicating Clay baths
  4. Products such as essential oils
  5. Snake oil
  6. Dietary plans: Gluten free/Casein free diet and the addition/deletion of specific nutrients
  7. Lupron Therapy: Testosterone therapy
  8. Chelating therapies
  9. Secretin Injection
  10. Major Vitamin supplements
  11. Marijuana Therapy
  12. Bleach therapy
  13. TMS
  14. Dolphin-assisted therapy
  15. Holding therapy
  16. Prism glasses etc.


Sometimes in the absence of facilities for recommended therapies, parents of autistic children (who by themselves form a vulnerable population), may resort to any/many of the above. It is important thus for a psychiatrist to be aware of that what is not recommended or has a poor evidence base.

It is important to also mention here, that the Centre for Disease Control, USA has clearly stated that vaccines play no role in causing autism. Parents at times, under the influence of nonscientific hearsay, do not follow the vaccination schedule, as a preventive measure for autism. The converse is actually true, and lack of routine vaccination can be more detrimental to the child.

Autism, despite being a challenge for most clinicians, and a lifelong condition has found the tremendous potential for research as well as intervention in the last decade. What is definitely evidenced is that earlier the diagnosis and earlier the intervention, better is the overall outcome and quality of life for not only the autistic individual but the entire family.[36]

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.


   Appendix Top


Appendix 1

Below are given 40 statements which are divided under six domains. Please tick (✓) mark the appropriate rating for each item of the scale b observing the child & by interviewing the parents in order to assess Autism




   Certificate of Disability of People with Autism Top




Government of____________

(Name & Address of State/Authorised Autism Certification Medical Board issuing the certificate)

This is to certify that Shri/Smt./Kum._____________________________________________Son/Daughter of_________________________________________of Village/Town/City (complete address of the applicant) with particulars given below

  • Date of Birth
  • Sex
  • Signature & Thumb impression


has been examined by the State/Authorised Autism Certification Medical Board & he/she is found to be categorised as person with No Autism/ Mild Autism / Moderate Autism / Severe Autism

His/Her percentage Disability is _____.

Signature & Seal

Chairperson of State/Authorised Autism Certification Medical Board

Date:

Place:



 
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Correspondence Address:
Dr. Alka A Subramanyam
OPD 13, 1st Floor, Department of Psychiatry, TMC and BYL Nair Ch. Hospital, Dr. A. L. Nair Road, Mumbai - 400 008, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/psychiatry.IndianJPsychiatry_542_18

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    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5]
 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9], [Table 10]



 

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