Autism Spectrum Disorder
The Nurturing Womb (2017) by Amrit Khurana, a young artist on the autism spectrum
Source: Amrit Khaurana @ Not Just Art: A Youth4Jobs start-up
Autism Spectrum Disorder (ASD)
Autism, also called Autism Spectrum Disorder (ASD), is a complicated condition that includes problems with communication and behavior. It can involve a wide range of symptoms and skills. ASD can be a minor problem or a disability that needs full-time care in a special facility.
People with autism have trouble with communication. They have trouble understanding what other people think and feel. This makes it hard for them to express themselves, either with words or through gestures, facial expressions, and touch.
People with autism might have problems with learning. Their skills might develop unevenly. For example, they could have trouble communicating but be unusually good at art, music, math, or memory. Because of this, they might do especially well on tests of analysis or problem-solving.
More children are diagnosed with autism now than ever before. But the latest numbers could be higher because of changes in how it’s diagnosed, not because more children have a disorder.
What are the Signs of Autism?
Symptoms of autism usually appear before a child turns 3. Some people show signs from birth. Common symptoms of autism include:
Lack of eye contact - little or inconsistent eye contact
Narrow range of interests
Intense interest in certain topics
Repeating certain behaviors, words, or phrases - doing something over and over, like repeating words or phrases, rocking back and forth, or flipping a lever;
Sensory Sensitivities - high sensitivity to sounds, touches, smells, or sights that seem ordinary to other people
Talking at length without gauging the interest of others - not looking at or listening to other people
Not sharing enjoyment of objects or activities by pointing or showing things to others
Not wanting to be held or cuddled
Difficulty with back and forth communication - problems understanding or using speech, gestures, facial expressions, or tone of voice;
Flat tone of voice - talking in a sing-song, flat, or robotic voice
Trouble adapting to changes in routine
Problems in sleeping
Difficulty responding to adult attempts to gain attention
Difficulty with perspective-taking
Some children with autism may also have seizures. These might not start until adolescence.
Typical Strengths of Many Autistic People
While autistic people may face many challenges, they may also have differences that many would consider strengths. These include:
superior memory for facts and figures
specialist knowledge in topics of interest
high level of motivation and enthusiasm in activities of interest, with a drive to share this enjoyment and enthusiasm with others
high degree of accuracy in various tasks
innovative approaches to problem solving
exceptional attention to detail
ability to follow instructions accurately, under appropriate guidance
exceptional creative skills
ability to see the world from an alternative perspective and therefore offer unique insights
a tendency to be nonjudgmental, honest, and loyal in social relationships
unique sense of humor
What are the Types of Autism Spectrum Disorders?
These types were once thought to be separate conditions. Now, they fall under the range of autism spectrum disorders including:
Asperger's Syndrome. These children don't have a problem with language; in fact, they tend to score in the average or above-average range on intelligence tests. But they have social problems and a narrow scope of interests.
Autistic Disorder. This is what most people think of when they hear the word "autism." It refers to problems with social interactions, communication, and play in children younger than 3 years.
Childhood Disintegrative Disorder. These children have typical development for at least 2 years and then lose some or most of their communication and social skills.
Pervasive Developmental Disorder (PDD or atypical autism). Your doctor might use this term if your child has some autistic behavior, like delays in social and communications skills, but doesn’t fit into another category.
What Causes Autism?
Exactly why autism happens isn't clear. It could stem from problems in parts of your brain that interpret sensory input and process language.
Autism is four times more common in boys than in girls. It can happen in people of any race, ethnicity, or social background. Family income, lifestyle, or educational level doesn’t affect a child’s risk of autism. But there are some risk factors:
Autism runs in families, so certain combinations of genes may increase a child’s risk.
A child with an older parent has a higher risk of autism.
Pregnant women who are exposed to certain drugs or chemicals, like alcohol or anti-seizure medications, are more likely to have autistic children. Other risk factors include maternal metabolic conditions such as diabetes and obesity. Research has also linked autism to untreated phenylketonuria (also called PKU, a metabolic disorder caused by the absence of an enzyme) and rubella (German measles).
There is no evidence that vaccinations cause autism.
How Is Autism Diagnosed?
It can be hard to get a definite diagnosis of autism. Your doctor will focus on behavior and development.
For children, diagnosis usually takes two steps.
A developmental screening will tell your doctor whether your child is on track with basic skills like learning, speaking, behavior, and moving. Experts suggest that children be screened for these developmental delays during their regular checkups at 9 months, 18 months, and 24 or 30 months of age. Children are routinely checked specifically for autism at their 18-month and 24-month checkups.
If your child shows signs of a problem on these screenings, they’ll need a more complete evaluation. This might include hearing and vision tests or genetic tests. Your doctor might want to bring in someone who specializes in autism disorders, like a developmental pediatrician or a child psychologist. Some psychologists can also give a test called the Autism Diagnostic Observation Schedule (ADOS).
If you weren’t diagnosed with autism as a child but notice yourself showing signs or symptoms, talk to your doctor.
How Is Autism Treated?
There’s no cure for autism. But early treatment can make a big difference in development for a child with autism. If you think your child shows symptoms of ASD, tell your doctor as soon as possible.
What works for one person might not work for another. Your doctor should tailor treatment for you or your child. The two main types of treatments are:
Behavioral and communication therapy to help with structure and organization. Applied Behavior Analysis (ABA) is one of these treatments; it promotes positive behavior and discourages negative behavior. Occupational therapy can help with life skills like dressing, eating, and relating to people. Sensory integration therapy might help someone who has problems with being touched or with sights or sounds. Speech therapy improves communication skills.
Medications to help with symptoms of ASD, like attention problems, hyperactivity, or anxiety.
Complementary treatments may help boost learning and communication skills in some people with autism. Complementary therapies include music, art, or animal therapy, like horseback riding and even swimming with dolphins. Therapy also aims to reduce challenging behaviors and build upon strengths.
Some autistic adults are unable to live independently. An autistic culture has developed, with a minority of individuals seeking a cure, and others believing autism should be accepted as a difference to be accommodated instead of cured.
Applied Behaviour Analysis (ABA)
Applied Behaviour Analysis (ABA) is the only proven intervention to be deemed effective when working with individuals with autism. ABA focuses on the observable relationship of behaviour to the environment. By looking at this relationship, the methods of ABA can be used to change behaviour. Though you may hear of a variety of other strategies to help individuals with autism, none have the research behind it to prove their efficacy.
ABA is Applied, meaning it targets behaviours that are socially significant.
ABA is Behavioural, studying observable, measurable events.
And ABA is Analytic as it demonstrates reliable factors controlling behaviour.
ABA will help to:
Teach new skills
Reduce maladaptive behaviours
Early Understanding of Autism
The word autism first took its modern sense in 1938 when Hans Asperger of the Vienna University Hospital adopted Bleuler's terminology autistic psychopaths in a lecture in German about child psychology. Asperger was investigating an ASD now known as Asperger's Syndrome, though for various reasons it was not widely recognized as a separate diagnosis until 1981.
Leo Kanner of the Johns Hopkins Hospital first used autism in its modern sense in English when he introduced the label early infantile autism in a 1943 Autistic Disturbances of Affective Contact of 11 children with striking behavioral similarities. Almost all the characteristics described in Kanner's first paper on the subject, notably "autistic aloneness" and "insistence on sameness", are still regarded as typical of the autistic spectrum of disorders. It is not known whether Kanner derived the term independently of Asperger.
A few examples of autistic symptoms and treatments were described long before autism was named. The Table Talk of Martin Luther, compiled by his notetaker Johannes Mathesius between 1531 and 1546, contains the story of a 12-year-old boy who may have been severely autistic.
The earliest well-documented case of autism is that of Hugh Blair of Borgue, as detailed in a 1747 court case in which his brother successfully petitioned to annul Blair's marriage to gain Blair's inheritance.
The Wild Boy of Aveyron, a feral child caught in 1798, showed several signs of autism; the medical student Jean Itard treated him with a behavioral program designed to help him form social attachments and to induce speech via imitation.
Mary Temple Grandin
Mary Temple Grandin (b 1947) is an American scientist, academic and animal behaviorist. She is a prominent proponent for the humane treatment of livestock for slaughter and the author of more than 60 scientific papers on animal behavior. Grandin is a consultant to the livestock industry, where she offers advice on animal behavior, and is also an autism spokesperson.
Grandin is one of the first autistic people to document the insights she gained from her personal experience of autism. She is currently a faculty member with Animal Sciences in the College of Agricultural Sciences at Colorado State University.
In 2010, Time 100, an annual list of the 100 most influential people in the world, named her in the "Heroes" category. She was the subject of the Emmy- and Golden Globe-winning biographical film Temple Grandin made in a 2010 by Mick Jackson and starring Claire Danes as Temple Grandin.
Grandin has been an outspoken proponent of autism rights and neurodiversity movements.
Victor of Aveyron (1788–1828) was a French feral child who was found at the age of around 9. Not only is he considered the most famous feral child, but his case is also the most documented one.
Victor's portrait from the front cover of the book about him
Characteristics and Symptoms of Autism
In 1938, Hans Asperger, a pediatrician at the University of Vienna, described numerous children he observed as “autistic.”
Understanding the Characteristics of Autism
Not all children with a diagnosis of Autism Spectrum Disorder are the same. They are their own person, and will have their own individual Autism characteristics. Autism spectrum disorder is a neurodevelopmental disorder that has 2 core areas of characteristics (plus additional criteria applicable to both areas).
The first core area has 2 subsections:
The first relates to impairments in Social Interaction – can range from not being able to play with toys functionally to not being able to ask a friend to play even though the child may have words.
The second, relates to deficits in Social Communication – can range from not having any verbal language and using other means to communicate, for example using pictures, or gestures, or sign language, to having verbal communication however having difficulty in comprehending others perspectives or knowing how to ask a friend to play
The second core area relates to restricted and repetitive patterns of behaviour, interests, or activities. This can range from flapping of the arms, rocking back and forth, to using toys or objects in a manner not intended for. For example, a child may turn a toy truck over and only spin the wheels, instead of driving it around on the floor. Even echolalia in Autism and Tourette’s syndrome falls under this category.
The third section relates to additional criteria relating to the two core areas as described: Symptoms must be present in the early developmental period (but may not fully manifest until social demands exceed limited capacities, or symptoms may be masked by learned strategies later in life). Overall, symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning, These disturbances are not better explained by intellectual disability (such as intellectual developmental disorder) or a global developmental delay.
The DSM, which is published by the American Psychiatric Association provides both a common language and standard criteria for the classification of mental disorders. As it relates to Autism, there are 3 main areas required for diagnosis:
Social communication, and social interaction
Restrictive, repetitive behaviours, interests, or activities and
Additional criteria
Social Deficits with Autism
First, let’s talk about the social deficits. All individuals must have or have had persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifested by all 3 of the following:
Deficits in social-emotional reciprocity; behaviours range from abnormal social approach and failure of normal back and forth conversation, to reduced sharing of interests, emotions, or affect; and involves the failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviours used for social interaction, ranging from poorly integrated- verbal and nonverbal communication to abnormalities in eye contact and body-language, or deficits in understanding and using gestures, to a total lack of facial expression and non-verbal communication.
Deficits in developing, maintaining and understanding relationships; behaviours here range from having difficulties adjusting their behaviour to suit various social contexts, to having difficulties in sharing imaginative play or in making friends; or an absence of interest in peers.
Eye Contact
Individuals with autism may have difficulty with maintaining eye contact, may have difficulty reading and using facial expressions, body posture and gestures. For example, they may not respond to a “stare” that means to stop or to tone of voice. This should not be interpreted as defiance, rather it’s that sometimes they don’t recognize what it means.
Relationships
Misinterpreted as having no relationships – children with ASD often have very strong, connected relationships with parents and primary caregivers, but they struggle with making relationships with their peers. Lack of shared or joint attention may be the core deficit. They don’t look to other’s to share the experience, they don’t bring others attention to their activity; for example, they don’t say “hey, look at what I am doing) and therefore they struggle to learn social behaviours.
Perspective
Children learn how to behave socially by watching others. Children with ASD struggle with knowing that others may have a different point of view or perspective, may know or believe different things and may have different experiences.
This leads to difficulty understanding and predicting others behaviour and a lack of awareness of the impact of their behaviour on others. They may speak in the same manner to people of all ages, with different levels of familiarity – for example, the bus driver that they don’t know in the same way they talk to a familiar family member).
Deficits in the social domain cause the individual with autism to have the inability to: Read the listener’s level of interest, detect a speaker’s intended meaning, understand “unwritten rules” or conversations, and anticipate what others might think of one’s actions.
Having A Conversation
They may not notice when people are talking to them, therefore may not respond
Though they know how to talk, they may have difficulty “joining in” on the conversation
Some individuals with ASD may have poor eye contact or may have difficulty making eye contact at all
Non-Verbal Communication
They may have difficulty understanding gestures; for example, hand gestures such as waves hello or waves goodbye, or a thumbs up, understanding body language such as shoulder shrugs, nods of approval, shaking of head in disapproval, hands crossed over one’s chest showing disinterest, smiles, etc.. As these cues may not be understood, individuals with ASD may not respond appropriately.
Routine Oriented
Some individuals with ASD are overly dependent on routines
Some individuals with ASD have a need for things to always be the same. They don’t like changes or surprises.
Examples include dressing in the same order each day going to school or work on the same route. They may do the same activities on same days. For example, Mondays is always play gym, Tuesday is swimming, Wednesday is always a trip to the library, etc.
Making Friends
Children with ASD may not relate to their own age group, and sometimes prefer the company of adults.
Individuals with ASD may have some difficulty controlling or displaying their emotions and excitement in an appropriate manner and this can affect their social interaction with their peers.
Behavioral Deficits with Autism
We are now going to move on to the behaviour section of the diagnostic criteria. All individuals with ASD must have or have had restricted, or repetitive patterns of behaviour, interests, or activities as manifested by at least two of the following 4 domains:
Stereotyped or repetitive motor movements, use of objects, or speech. Examples include repetitive simple motor movements like twirling ones hair, lining up toys, flipping objects over, echolalia, or use of idiosyncratic phrases.
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior. Examples include, extreme distress at small changes, difficulties with transitions, rigid thinking patterns, or greeting rituals, and the need to take the same route or eat same foods every day).
Highly restricted, fixated interests that are abnormal in intensity or focus. For example, individuals with ASD may have strong attachment to, or preoccupation with unusual objects like fans or washing machines). Individuals with ASD may have excessively circumscribed or perseverative interests).
The last domain deals with Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment. For example, having an indifference to pain or temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement.
Below are some of the challenges observed in behavioral characteristics of Autism – primarily related to restricted and repetitive behavior, activities, interests?
Play
Many people with ASD display restricted patterns of interests, therefore, may talk about or focus on only one thing, for example, trains, or 1 particular piece of music.
Some individuals with ASD have unusual interests or habits, for example, obsessive interest in washing machines, motors, or a particular cartoon character.
Motor Movements
People with autism may repeat behaviours over and over again, such as spinning, rocking, staring, finger flicking, hitting themselves, grinding teeth.
Individuals with ASD may display unusual postures when interacting with others; they may walk and move in a manner that is not common.
Speech
Children with ASD may start to develop appropriate language and then regress. They may develop language very slowly, or they may never develop vocal speech communicating only by gestures like pointing or reaching.
Some individuals with ASD have echolalia (this is repeating something they just heard in a non-functional manner); for example, if you ask them, “How are you today?” the individual with ASD will respond “How are you today?” instead of answering the question.
Sensory Integration
Individuals with ASD may have hypersensitivity or hypo-sensitivity to sounds, sights, touch, taste and smells. For example, fire alarms, school bells, a crowded mall, tags on clothing, smells in a restaurant all may cause distress for the individual with ASD.
A comparison of DSM-IV vs. DSM-V
Additional Autism Characteristics
In addition to the criteria for the social and behaviour domains, there are additional criteria required for diagnosing an individual with autism spectrum disorder.
C. Symptoms must be present in early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies later in life).
D. Symptoms must cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability or a global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make a comorbid diagnosis of autism and intellectual disability, social communication must be below that expected for the individual’s general developmental level.
This speaks to the fact that intellectual disability is not automatically associated with ASD. The individual must demonstrate more severe social communication deficits, over and above those expected from just having an intellectual disability. It must be demonstrated that the deficits are in the ASD specific areas, and not just an overall delay in all areas (otherwise known as a global developmental delay).
The exact cause of autism spectrum disorder is unknown. Researchers around the world are conducting studies to try and isolate the particular causes of this disorder. Results from current research strongly suggest that autism has a neurological, or genetic, or biological/environmental basis for its manifestation.
Associated Medical Conditions
Genetic Disorders: Some children with autism have an identifiable genetic condition that affects brain development. These genetic disorders include Fragile X syndrome, Angelman syndrome, tuberous sclerosis and chromosome 15 duplication syndrome and other single-gene and chromosomal disorders. While further study is needed, single gene disorders appear to affect 15 to 20% of those with ASD.
Gastrointestinal (GI) Disorders: GI distress is common among persons with autism, and affects up to 85% of children with ASD. These conditions range in severity from a tendency for chronic constipation or diarrhea to inflammatory bowel disease. Pain caused by GI issues can prompt behavioral changes such as increased self soothing (rocking, head banging, etc.) or outbursts of aggression or self-injury. Conversely, appropriate treatment can improve behavior and quality of life.
Seizure Disorders: Seizure disorders, including epilepsy, occur in as many as 39% of those with autism. It is more common in people with autism who also have intellectual disability than those without. Someone with autism may experience more than one type of seizure.
Sleep Dysfunction: Sleep problems are common among children and adolescents with autism and may likewise affect many adults.
Sensory Processing Problems: Many persons with autism have unusual responses to sensory input. They have difficulty processing and integrating sensory information, or stimuli, such as sights, sounds smells, tastes and/or movement. They may experience seemingly ordinary stimuli as painful, unpleasant or confusing.
Some of those with autism are hypersensitive to sounds or touch, a condition also known as sensory defensiveness.
Others are under-responsive, or hyposensitive. An example of hypersensitivity would be the inability to tolerate wearing clothing, being touched or being in a room with normal lighting. Hyposensitivity can include failure to respond when one's name is called.
Many sensory processing problems can be addressed with occupational therapy and/or sensory integration therapy.
Pica: Pica is a tendency to eat things that are not food. Eating non-food items is a normal part of development between the ages of 18 and 24 months. However, some children and adults with autism and other developmental disabilities continue to eat items such as dirt, clay, chalk or paint chips.
Autism Signs in Babies
Diagnosis and Assessment of Autism
Presently, we do not have a medical test that can diagnose autism. Instead, specially trained psychiatrist and psychologists administer autism-specific behavioral evaluations. Often parents are the first to notice that their child is showing unusual behaviors such as failing to make eye contact, not responding to his or her name or playing with toys in unusual, repetitive ways. Recent research confirms that appropriate screening can determine whether a child is at risk for autism as young as one year. While every child develops differently, we also know that early treatment improves outcomes, often dramatically. Studies show, for example, that early intensive behavioral intervention improves learning, communication and social skills in young children with autism spectrum disorders (ASD).
One of the most important things you can do as a parent or caregiver is to learn the early signs of autism and become familiar with the typical developmental milestones that your child should be reaching.
The following "red flags" may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of the following, please don't delay in asking your psychiatrist doctor for an evaluation:
No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
No words by 16 months
No meaningful, two-word phrases (not including imitating or repeating) by 24 months
Any loss of speech, babbling or social skills at any age
No babbling by 12 months
Source:
Subtle Signs of Autism 0-7 years old, Wonkido, 2012
This video shows the subtle signs of autism from one child as he ages and his tremendous growth from years of therapy.
Of course, I have not included other behaviors such as tantrums, lack of social engagement, fear of strangers, covering of the ears and hyper-focus of behaviors. Other than two word basic needs sentences, he only spoke in movie quotes until the age of 5.
Autism Signs in Toddlers
Autism Signs in Children
Cover of DSM-5 (2013)
Cover of DSM-I (1952)
Other subsections of Section II of DSM-5
Schizophrenia spectrum and other psychotic disorders
Bipolar and related disorders
Depressive disorders
Anxiety disorders
Obsessive-compulsive and related disorders
Trauma- and stressor-related disorders
Dissociative disorders
Somatic symptom and related disorders
Feeding and eating disorders
Elimination disorders
Sleep–wake disorders
Sexual dysfunctions
Gender dysphoria: Disruptive, impulse-control, and conduct disorders; Substance-related and addictive disorders; Neurocognitive disorders; Personality disorders; Paraphilic disorders
Diagnostic and Statistical Manual of Mental Disorders (DSM-5)
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), is the 2013 update to the Diagnostic and Statistical Manual of Mental Disorders, the taxonomic and diagnostic tool published by the American Psychiatric Association (APA).
In the United States, the DSM serves as the principal authority for psychiatric diagnoses. Treatment recommendations, as well as payment by health care providers, are often determined by DSM classifications, so the appearance of a new version has practical importance. The DSM-5 is the only DSM to use an Arabic numeral instead of a Roman numeral in its title.
The DSM-5 is not a major revision of the DSM-IV-TR but there are significant differences. Changes in the DSM-5 include the reconceptualization of Asperger syndrome from a distinct disorder to an autism spectrum disorder, and several others.
Section II of DSM-5 describes Diagnostic Criteria and Codes for various disorders under specific groups.
We detail on Neurodevelopmental disorders which relates to ASD and other disabilities. Other sections are listed but not detailed.
Neurodevelopmental disorders
"Mental retardation" was renamed "intellectual disability (intellectual developmental disorder)".
Speech or language disorders are now called communication disorders which include
language disorder (formerly expressive language disorder and mixed receptive-expressive language disorder)
speech sound disorder (formerly phonological disorder)
childhood-onset fluency disorder (stuttering)
A new condition characterized by impaired social verbal and nonverbal communication called social (pragmatic) communication disorder
Autism spectrum disorder incorporates:
A new sub-category, motor disorders, encompasses:
Sources:
DSM-5, Wikipedia
Further reading:
Diagnostic and Statistical Manual of Mental Disorders, Wikipedia
Diagnostic and Statistical Manual (DSM) Overview, verywellmind
Diagnostic and Statistical Manual of Mental Disorders, Britannica
About DSM-5-TR, APA
Diagnostic and statistical manual-5: Position paper of the Indian Psychiatric Society, Indian Journal of Psychiatry, 2013
History of the Diagnostic & Statistical Manual of Mental Disorders, 2022
Distinction of ICD & DSM
An alternate, widely used classification publication is the International Classification of Diseases (ICD) is produced by the World Health Organization (WHO). The ICD has a broader scope than the DSM, covering overall health as well as mental health; chapter 5 of the ICD specifically covers mental and behavioral disorders. Moreover, while the DSM is the most popular diagnostic system for mental disorders in the US, the ICD is used more widely in Europe and other parts of the world, giving it a far larger reach than the DSM.
An international survey of psychiatrists in sixty-six countries compared the use of the ICD-10 and DSM-IV. It found the former was more often used for clinical diagnosis while the latter was more valued for research. This may be because the DSM tends to put more emphasis on clear diagnostic criteria, while the ICD tends to put more emphasis on clinician judgement and avoiding diagnostic criteria unless they are independently validated. That is, the ICD descriptions of psychiatric disorders tend to be more qualitative information, such as general descriptions of what various disorders tend to look like. The DSM focuses more on quantitative and operationalized criteria; e.g. to be diagnosed with X disorder, one must fulfill 5 of 9 criteria for at least 6 months.
The DSM-IV-TR (4th. ed.), on which DSM-5 has been released, contains specific codes allowing comparisons between the DSM and the ICD manuals, which may not systematically match because revisions are not simultaneously coordinated. Though recent editions of the DSM and ICD have become more similar due to collaborative agreements, each one contains information absent from the other.
India on DSM-5
The Task Force of the Indian Psychiatric Society examines the current draft of the DSM-5 and discusses the implications from an Indian perspective in Diagnostic and statistical manual-5: Position paper of the Indian Psychiatric Society, 2013
Indian Scale for Assessment of Autism (ISAA)
Indian Scale for Assessment of Autism (ISAA) is an objective assessment tool for persons with autism which uses observation, clinical evaluation of behaviour, testing by interaction with the subject and also information supplemented by parents or caretakers in order to diagnose autism.
ISAA consists of 40 items rated on a 5-point scale ranging from 1 (never) to 5 (always). The 40 items of ISAA are divided under six domains as given below.
Domain-I Social Relationship and Reciprocity
Individual with autism do not interact with other people. They remain socially unresponsive, aloof and may have difficulty in understanding another person's feelings, such as pain or sorrow. The have significant problems in use of body language and nonverbal communication, such as eye contact, facial expressions, and gestures and establishing friendships with children of the same age.
[01] Poor eye contact
[02] Lack social smile
[03] Remain aloof
[04] Do not reach out to other persons
[05] Inability to relate to people
[06] Inability to respond to social / environmental cues
[07] Engage in solitary and repetitive play activities
[08] Inability to take turns in social interaction
[09] Do not maintain peer relationships
Domain-II Emotional Responsiveness
Individuals with autism do not show the expected feelings in a social situation. Emotional reactions are unrelated to the situation and may show anxiety or fear which is excessive in nature without apparent reason. They may engage in self-talk that is inappropriate for their age and may lack fear of danger.
[10] Inappropriate emotional response
[11] Show exaggerated emotions
[12] Engage in self-stimulating emotions
[13] Lack fear of danger
[14] Excited or agitated for no apparent reason
Domain-III Speech - Language and Communication
Individuals with Autism will have problems in speech development. They find it difficult to express their needs verbally and nonverbally and may also have difficulty in understanding the non verbal language of others. People with autism often, have echolalia and may repeat a word, phrase or sentence out of context.
[15] Acquired speech and lost it
[16] Difficulty in using non-verbal language or gestures to communicate
[17] Engage in stereotyped and repetitive use of language
[18] Engage in echolalic speech
[19] Produce infantile squeals or unusual noises
[20] Unable to initiate or sustain conversation with others
[21] Use jargon or meaningless words
[22] Uses pronoun reversals
[23] Unable to grasp pragmatics of communication (real meaning)
Domain-IV Behaviour Patterns
Individuals with autism may engage in self-stimulatory behaviour in the form of flapping of hands or using an object for this purpose. They insist on following routines, sameness and may resist change. Some autistic children may be restless and exhibit aggressive behaviour.
[24] Engage in stereotyped and repetitive motor manners
[25] Show attachment to inanimate objects
[26] Show hyperactivity / restlessness
[28] Throw temper tantrums
[29] Engage in self-injurious behaviour
[30] Insist on sameness
Domain-V Sensory Aspects
A majority of autistic people are either hyper or hypo sensitive to light, sound, smell and other external stimulation. They may ignore objects or become obsessed by them or they may watch those objects very intently or act as if they are not even there. Some autistic children explore their environment by smelling, touching or tasting objects.
[31] Unusually sensitive to sensory stimuli
[32] Stare into space for long periods of time
[33] Difficulty in tracking objects
[34] Has unusual vision
[35] Insensitive to pain
[36] Respond to objects unusually by smelling, touching or tasting
Domain-VI Cognitive Component
Individuals with autism may lack attention and concentration. They do not respond to instructions promptly or respond after a considerable delay. On the other hand individuals with autism may also have special or unusual ability known as, savant ability in some areas like reading, music, memory and artistic abilities.
[37] Inconsistent attention and concentration
[38] Delayed response time
[39] Unusual memory
[40] Savant ability
Basis for ISAA Scores
To arrive at the taxonomy of ISAA, the scores of 376 children who scored 70 and above from autism group were analyzed. It was found that:
Minimum 70.0
Maximum 181.0
Mean 106.09
S.D 23.5
Based on the scores, the following classification of degree of autism has been decided
Cut off score to Mean score (70 to 106): mild autism
Mean to Mean+ 2SD (106 to 153): moderate autism
More than Mean + 2SD (> 153): severe autism
Sources:
Indian Scale for Assessment of Autism (ISAA), The National Trust
Overview of Autism, Vikaspedia
Scoring System
ISAA should be scored as per the scoring system given below. Each of the 40 test items is to be rated on 5 categories, out of which one is to be checked.
These are further quantified by providing percentages to indicate the frequency, degree and intensity of behavioural characteristics that are observed. The categories along with the percentages assigned are as follows:
Rarely (0-20%) indicates that the person exhibits this behaviour pattern for up to 20% of the time. This score is normal for their age and socio-educational background: Score 1.
Sometimes (21–40%) indicates that the person exhibits this behaviour pattern for 21-40 % of the time. Some of these behaviours may be a cause for attention and concern, but by and large they may be considered within normal limits for their age and socio-educational background. Person is completely independent in activities of daily life: Score 2.
Frequently (41–60%) indicates that the person exhibits this behaviour pattern for 41-60% of the time. These behaviours occur with such frequency and regularity that they interfere with the persons' functioning in daily life. Behaviour at this level will be definitely disabling. Person may be able to perform activities of daily life with minimum assistance: Score 3.
Mostly (61–80 %) indicates that the person exhibits this behaviour pattern for 61% - 80 % of the time. The given behaviour may occur without any discernible stimulus. The behaviour under consideration occurs so regularly that it significantly hampers the person in performing daily activities. Person needs assistance in activities of daily life - Score 4.
Always (81-100%) indicates that the person exhibits this behaviour pattern almost all the time, so much so that it would be considered a major handicap. The behaviour shown is seldom appropriate to the given situation. Person is completely dependent on activities of daily life - Score 5.
The minimum score that can be obtained is 40.
The maximum score that can be obtained is 200.
Norms of ISAA for Diagnosis of Autism
ISAA Scores ==> Degree of Autism
< 70 ==> Normal
70 to 106 ==> Mild Autism
107 to 153 ==> Moderate Autism
> 153 ==> Severe Autism
Further reading:
Use of Indian Scale for Assessment of Autism in Child Guidance Clinic: An Experience, Indian Journal of Psychological Medicine, 2011
Protocol for Development of the Indian Autism Screening Questionnaire: The Screening Version of the Indian Scale for Assessment of Autism, Indian Journal of Psychological Medicine, 2020
Autism and ISAA Test, Inclusive Education, 2022 (Punjabi)
ISAA Form - Page 1
ISAA Form - Page 2
ABA in India (Hindi)
Ep 192 | What is ABA | Applied behaviour analysis | Sanjukta Mukherjee | Reena Singh, Reena Singh, 2020 (Hindi)
Mrs. Sanjukta Mukherjee talks about what is ABA and how frequently assessments are conducted.
Sanjukta Mukherji is a Board Certified Behavior Analyst (BCBA) and Special Education teacher based out of Houston, Texas. She specializes in Applied Behavior Analysis (ABA) and works with clients across a wide age range in clinical, educational, and vocational settings. She is the co-founder of Special Aspirations, imparting functional academics, life skills and vocational training using ABA strategies. Above all, she is a proud mother of a young adult son with autism and a neurotypical teen daughter.
She can be reached on Email: sanjukta@specialaspirations.com or sbm.bcba@gmail.com
Autism in India & ABA Training in Multiple Languages with Dr. Smita Awasthi, Mary Barbera - Turn Autism Around, 2020
Dr. Mary Barbera interviews Dr. Smita Awasthi discussing autism in India, ABA training in multiple languages, and getting vocal language for kids with autism.
Smita Awasthi, Ph.D., BCBA-D holds a Doctorate in Behavior Analysis and has 36 years of clinical experience. During this period, Smita has worked on capacity building, skilling therapists, parent training, advocacy, education, and mentoring students in the latest technologies in autism intervention. She wears many hats and has many Firsts to her credit. She started the first BACB approved behavior analysis consequence in India in 2014 of which she is the Program Director. She formed Behavior Momentum India Foundation, a non-gov’t not for profit organization which is currently working towards building a large residential community for adults with autism.
Applied Behavior Analysis in Hindi// ABA// Autism India // RBT India, Parashar Academy, 2022 (Hindi)
ABA (Applied Behavior Analysis) क्या है ? Autism or ASD में ABA का क्या उपयोग है ? Reinforcement क्या है ? Prompts क्या है ? ABC model क्या है ? best treatment of autism or autistic children in India. ABC model का उदहारण . ABA ke barae me jankari. ABA applied behavior analysis in Hindi
Also check the Applied Behavior Analysis (ABA) Page under Caregivers
Applied Behavior Analysis (ABA)
Applied Behavior Analysis (ABA) is a type of therapeutic intervention that can improve social, communication, and learning skills through reinforcement techniques. In addition to improving general adaptive behaviours, such as social skills, learning skills, it can focus on specific skill learning such as fine motor dexterity, hygiene, grooming, etc. Some also call it Autism Behavioural Therapy but it’s just one of ABA’s applications. ABA is effective for both children and adults with psychological conditions in a variety of settings, including schools, homes, and clinics. It has also been shown that consistent ABA therapy can significantly improve positive skills and behaviours and decrease the need for special services in the future
ABA therapy programs can help:
Improve language and communication skills
Increase attention, focus, social skills, memory, and academics
Reduce the occurrence of behavioural problems
ABA is a type of therapy based on the psychology of learning and behavioural trades. ABA therapy applies the understanding of how behaviour works in real-life situations, to increase behaviours that are helpful and decrease behaviours that are harmful or affect learning. Applied Behavior Analysis involves several techniques for understanding and changing behaviour. ABA is a form of flexible treatment that can be adapted to meet the needs of each unique person. It can also be provided in many different locations – at home, at school, and in the community. ABA therapy can involve one-to-one teaching or group instruction ABA therapy programs can help:
A qualified behavioural psychologist designs and directly oversees the program. They customize the ABA program to the child’s skills, needs, interests, preferences, and family circumstances. The ABA program is started with a detailed assessment of the child’s existing skills and preferences in order to formulate specific treatment goals. Treatment goals are decided after taking into consideration the age and ability level of the child with autism. Goals can include different skill areas, such as:
Communication and language
Social skills
Self-care behaviours
Play and leisure
Motor skills
The instruction plan breaks down each of these skills into small, concrete steps. The therapist teaches each step one by one, from simple (e.g. imitating single sounds) to more complex (e.g. carrying on a conversation). Progress is measured by collecting data in each therapy session. Data helps to monitor the child’s progress toward goals on an ongoing basis.
The therapist egularly meets with family members to review information about progress in order to plan ahead and adjust teaching plans and goals accordingly.
5 Techniques Used in Applied Behaviour Analysis
Applied Behavior Analysis involves several techniques to produce desired results in children who can benefit from behaviour modification. Here are five of those valuable techniques:
Positive Reinforcement: A child with special needs who face difficulties in learning or social interaction may not know how to respond in certain situations. One way to encourage positive social behaviours involves using positive reinforcement immediately to encourage the behavior in the future.
Negative Reinforcement: When maladaptive behaviours occur, the behavior needs to be corrected immediately. A good way to correct bad behavior is to remove a desired object or activity from the child. This is a form of non-aversive punishment. More importantly, negative reinforcement should be consistent for the child to understand the relevance of the action and consequence.
Using prompts and cues: Prompts are visual or verbal cues used to encourage a particular behaviour. Verbal cues are gentle reminders while visual cues are even less direct and might be a gesture or a look of your eyes. The child will see this cue and be reminded to behave in a simple way. Examples could be taking their shoes off when walking into the house or washing their hands before a meal. The idea is to eventually fade out the prompts when the child no longer needs them. The prompts can be helpful because they are typically not intimidating or accusatory.
Task Analysis: This is an analysis model of current behavioural trends and actions to help learn about the child rather than correct or reinforce the behaviour. The child psychologist gives the child a task and observes how they perform it. This analysis is broken down into a number of categories :
Physical actions
Cognitive actions
Repetition
Allocation
Environment
Once the therapist has analysed how the child performs tasks, this information is used to make other tasks easier for the particular child by breaking them down into steps that will be easily understood by the child.
Generalization: Through this model, the therapist takes what the child has learned in one instance and applies it to other instances. For example, If a child knows how to say the alphabet when singing it, the child psychologist can take their knowledge of the alphabet and try to apply it to teaching the child to spell out their name.
Children with special needs benefit the most from personalized and special assistance. Therapists who use applied behaviour analysis use these particular techniques and others that help make children who need a little more help independent, well adjusted and happy adults.
Sources:
What is Applied Behavior (ABA) Analysis Therapy?, Mom's Belief
Further reading:
A Board Certified Behavior Analyst (BCBA) is a person with a certification in applied behavior analysis which is critical for professional caregiving for ASD. BCBAs receive this certification through the Behavior Analyst Certification Board.
Applied behavioral analysis (ABA) uses scientific and systematic processes to help influence an individual’s behavior. Behavior analysts can work in schools, classrooms, hospitals, clinics, and nonprofits; many analysts specialize in certain areas like autism, developmental disabilities, or mental health issues.
How does BCBA certification work?
To receive BCBA certification, there are four main requirements every applicant must meet:
Hold a graduate degree in a relevant field
Fulfill relevant coursework
Complete supervised experience
Pass the BCBA exam to become a Board Certified Behavior Analyst
The Behavior Analyst Certification Board, Inc.® (BACB®) has been the leader in behavior analyst certification for over two decades. The BACB is a nonprofit corporation that was established in 1998 to meet professional certification needs identified by behavior analysts, governments, and consumers of behavior-analytic services. The BACB’s mission is to protect consumers of behavior-analytic services by systematically establishing, promoting, and disseminating professional standards of practice.
Accreditation
The BCBA®, BCaBA®, and RBT® certification programs are accredited by the National Commission for Certifying Agencies (NCCA), the accreditation body of the Institute for Credentialing Excellence (ICE). NCCA’s Standards for the Accreditation of Certification Programs were the first standards developed for professional certification programs to help ensure the health, welfare, and safety of the public. NCCA standards articulate the essential elements of a high-quality certification program. Consistent with these standards, the BACB’s certification requirements, examination content, and procedures undergo regular review by subject matter experts in the discipline.
To learn more about accreditation, see ICE’s video, Value of Accreditation: Why it Matters.
The Board Certified Behavior Analyst® (BCBA®) is a graduate-level certification in behavior analysis. Professionals certified at the BCBA level are independent practitioners who provide behavior-analytic services.
BCBAs may supervise the work of Board Certified Assistant Behavior Analysts® (BCaBAs®), Registered Behavior Technicians® (RBTs®), and other professionals who implement behavior-analytic interventions.
History and Timeline of Autism
You might think of autism as a new problem because it has become so much more prevalent in recent years. But it's actually been on the books for more than 70 years--and our thinking about the condition has changed dramatically during that time.
The history of autism begins in 1911, when Swiss psychiatrist Paul Eugen Bleuler coined the term, using it to describe what he believed to be the childhood version of schizophrenia. Since then, our understanding of autism has evolved, culminating in the current diagnosis of autism spectrum disorder (ASD) and informed by many notable events impacting autism clinical research, education, and support.
1908: The word autism is used to describe a subset of schizophrenic patients who were especially withdrawn and self-absorbed.
1926: Grunya Sukhareva, a child psychiatrist in Kiev, Russia, writes about six children with autistic traits in a scientific German psychiatry and neurology journal
1938: Louise Despert, a psychologist in New York, details 29 cases of childhood schizophrenia, some who have symptoms that resemble today's classification of autism.
1943: American child psychiatrist Leo Kanner publishes Autistic Disturbances of Affective Contact describing 11 patients who were focused on or obsessed with objects and had a “resistance to (unexpected) change.” He later named this condition “infantile autism.”
1944: Austrian pediatrician Hans Asperger publishes an important scientific study of children with autism, a case study describing four children ages 6 to 11. He notices parents of some of the children have similar personalities or eccentricities, and regards this as evidence of a genetic link. He is also credited with describing a higher-functioning form of autism, later called Asperger’s syndrome.
1949: Leo Kanner proclaims his theory that autism is caused by "refrigerator mothers", a term used to describe parents who are cold and detached.
1952: In the first edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) from American Psychiatric Associations (APA), children with symptoms of autism are labeled as having childhood schizophrenia.
1956: Leon Eisenberg publishes his paper The Autistic Child in Adolescence, which follows 63 autistic children for nine years and again at 15 years old.
1959: Austrian-born scientist Bruno Bettelheim publishes Joey: A "Mechanical Boy" in Scientific American about Joey, a 9-year-old with autism. He presents the image of an autistic child, turned into a machine by the terrible inhumanity of his human family, communicated volumes about the causes and consequences of autism. However, it is worth noting that Bruno Bettelheim still called Joey “schizophrenic” in the article, and described his autistic behaviors as the chief manifestations of this disease in infantile form.
1962: The National Autistic Society was founded in UK in 1962 by a group of London-based parents. It is the leading charity for autistic people and their families in the UK. For the past six decades, the National Autistic Society has been providing support, guidance and advice, as well as campaigning for improved rights, services and opportunities to help create a society that works for autistic people. It is the oldest national institution for autism.
1964: Bernard Rimland publishes Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, challenging the “refrigerator mother” theory of Leo Kanner and discussing the neurological factors in autism.
1964: Ole Ivar Lovaas begins working on his theory of Applied Behavioral Analysis (ABA) therapy for autistic children.
1965: The Sybil Elgar School begins teaching and caring for children with autism.
1965: The Autism Society of America (ASA) (or simply Autism Society) was founded in 1965 by Bernard Rimland and Ole Ivar Lovaas together with Ruth C. Sullivan and a small group of other parents of children with autism. Its original name was the National Society for Autistic Children; the name was changed to emphasize that children with autism grow up. In 2021, the ASA launched a new brand including a logo consisting of multicolor lines forming a fabric with a new slogan, "The Connection Is You".
1967: Psychologist Bruno Bettelheim writes The Empty Fortress: Infantile Autism and the Birth of the Self and popularizes the theory that "refrigerator mothers," as he termed them, caused autism by not loving their children enough. (Spoiler alert: This is completely false.) "Post-World War II, there was a lot of psychoanalytic work done on autism where researchers looked solely at the impact of life experiences," explains Parents advisor Fred Volkmar, director of the Child Study Center at Yale University School of Medicine and editor-in-chief of the Journal of Autism & Developmental Disorders. "They didn't consider the role of biology or genetics, which we now understand to be the main cause."
Autism is also classified under schizophrenia in the International Statistical Classification of Diseases and Related Health Problems, although scientists now know there is no link between the conditions.
1970s: Lorna Wing proposes the concept of Autism Spectrum Disorders. She identifies the triad of impairment, which includes three areas: social interaction, communication, and imagination.
1975: The Education for All Handicapped Children Act is enacted to help protect the rights and meet the needs of children with disabilities, most of whom were previously excluded from school.
1977: Susan Folstein and Michael Rutter publish the first study of twins and autism as Infantile Autism: A Genetic Study of 21 Twin Pairs. The study finds that genetics are an important risk factor for autism.
1980: "Infantile autism" is listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) for the first time in its third edition; the condition is also officially separated from childhood schizophrenia.
1987: The DSM replaces "infantile autism" with a more expansive definition of "autism disorder," and includes a checklist of diagnostic criteria. UCLA psychologist Ole Ivar Lovaas, publishes the first study showing how intensive behavior therapy can help children with autism - thus giving new hope to parents.
1988: The movie Rain Man is released. It stars Dustin Hoffman as an autistic savant who has a photographic memory and can calculate huge numbers in his head. "This was important for raising public awareness of the disorder," Dr. Volkmar notes, although not every kid on the autism spectrum has these kinds of skills.
1990: Autism is included as a disability category in the Individuals with Disabilities Education Act (IDEA), making it easier for autistic children to get special education services.
1991: Public schools begin identifying children on the spectrum and offering them special services.
1994: Asperger's Syndrome is added to the DSM, expanding the autism spectrum to include milder cases in which individuals tend to be more highly functioning.
1995: Persons with Disability (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, PwD Act 1995, passed in India as the first act for the disabled. Autism is not separately categorized - clubbed under Mental Retardation.
1996: Dr. Temple Grandin, an American scientist and animal behaviorist, writes Emergence: Labeled Autistic, a firsthand account of her life with autism and how she became successful in her field.
1998: Andrew Wakefield publishes his paper Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children in The Lancet suggesting that the measles-mumps-rubella (MMR) vaccine triggers autism. The theory is debunked by comprehensive epidemiological studies and eventually retracted.
1999: National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999, National Trust Act 1999, was passed in India to setup the National Trust for the benefit of the persons with disability. It refers to Autism in the title and also in the scope of the disability types to serve. It states: Autism means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behavior
1999: The Autism Society adopts the Autism Awareness Puzzle Ribbon as “the universal sign of autism awareness.”
2000: Vaccine manufacturers remove thimerosal (a mercury-based preservative) from all routinely given childhood vaccines due to public fears about its role in autism - even though, again, the vaccine-autism link has been debunked.
2002: The Autism Society launches the e-newsletter ASA-Net. National Association of Residential Providers for Adults with Autism (NARPAA) is founded. Autism 101, an online learning course, is a popular addition to the Autism Society website.
2003: The Global and Regional Asperger Syndrome Partnership (GRASP), an organization run by people with Asperger’s syndrome and autism spectrum disorders, is formed.
2003: Bernard Rimland and Stephen Edelson write the book Recovering Autistic Children.
2004: The Autism Society launches Autism SourceTM, an online referral database of autism-related services and supports.
2006: Ari Ne'eman establishes the Autistic Self Advocacy Network (ASAN)
2006: Dora Raymaker and Christina Nicolaidis start the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) to provide resources for autistic adults and healthcare providers.
2006: The president signs the Combating Autism Act to provide support for autism research and treatment.
2008: Autism and Environmental Health 101, an online course, is released. Monthly Sensory Friendly Films are launched around the country in partnership with AMC Theatres
2009:The Autism Society Launches the Vote 4 Autism advocacy campaign so advocates can contact Congressional members and express their opinion on pending legislation. The 1Power4Autism website fosters and supports local autism awareness events to support the Autism Society’s mission.
2009: The U.S. Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 children have autism spectrum disorders, up from 1 in 150 in 2007, though the CDC notes that the increase stems at least in part from improved screening and diagnostic techniques.
2010: Andrew Wakefield loses his medical license and is barred from practicing medicine, following the retraction of his autism paper.
2010: AMC Theatres and the Autism Society pilot FOCUS (Furthering Opportunities Cultivating Untapped Strengths), a competitive employment initiative for people with autism and other disabilities. HBO Films produces Temple Grandin a movie which receives wide critical acclaim.
2013: The DSM-5 folds all subcategories of the condition into one umbrella diagnosis of autism spectrum disorder (ASD). Asperger's Syndrome is no longer considered a separate condition. ASD is defined by two categories: 1) Impaired social communication and/or interaction. 2) Restricted and/or repetitive behaviors.
2014: The president signs the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014, reauthorizing and expanding the Combating Autism Act.
2016: Rights of Persons With Disabilities Act, 2016, RPWD Act 2016 (दिव्यांगजन अधिकार अधिनियम 2016 (हिन्दी))passed in India. Autism Spectrum Disorder included as a separate disability category.
2020: The Centers for Disease Control and Prevention determines one in 54 children have been identified with an autism spectrum disorder (ASD).
Autism research and advocacy continues to build on these past events, and researchers have now identified nearly 100 different genes and various environmental factors that contribute to autism risk. In addition, they’re learning more about the early signs and symptoms so kids can get screened and start treatment sooner.
Sources:
The Autism History Project: This website profiles people, ideas, and topics that shaped autism throughout the twentieth century and presents an archive of sources that illuminate that history.
A History and Timeline of Autism, by Vincent Iannelli, Fact checked by James Lacy, Nov 2020
Autism spectrum disorder, Guillaume Dumas, 2020
A History of Autism: From 18th century to the present day, 2020
Understanding environmental contributions to autism: Causal concepts and the state of science, 2018
The History of Autism, 2014
Autistic Disturbances of Affective Contact by Leo Kanner, The Nervous Child 2, 217-50, 1943
National Autistic Society, Wikipedia
Autism Society of America (ASA), Wikipedia
Source: Autism spectrum disorder, Guillaume Dumas, 2020
Source: History of Autism Timeline, 2011
History of Autism in India
Earliest Description Of Autism in India
It may come as a surprise to many people, but autism is not at all ‘new’ to India. Most likely introduced through the colonial British medical system, autism was described in the Indian scientific literature perhaps as early as 1944, by a Viennese paediatrician named A. Ronald working in Darjeeling, albeit without using the term 'autism'. Ronald presented an overview of the detection, causes, types and treatment of what he termed 'abnormal children' in the very same year as Kanner's hallmark publication.
Autism in Indian Literature
1959, 1960s, 1970s
The first time the term ‘autism’ appeared in Indian literature was in 1959, and a half-dozen research publications appeared through the 1960’s. Erna Hoch’s 1967 Psychiatrist on an Indian Playground provides a careful and comprehensive portrait of sixteen children diagnosed by Hoch with autism and treated through parental counseling and child psychotherapy. Through the 1970s, much of the published literature appeared to go unnoticed by Indians, with consistent references within these publications as theirs being "probably one of the initial attempts in Indian literature to describe and discuss" the disorder.
Beyond the research literature, information about autism in India in the late 1970s comes from parents and professionals who were involved with the broader field of disability. At this time, there were a few centres in India that were diagnosing children with autism. A study conducted in the mid 1990’s found that many of the older adolescents and young adults who received a diagnosis of autism could be traced to just a handful of professionals, and those with diagnoses before 1980 had received the diagnosis from abroad (Daley, 2004). Much of the diagnosis was dependent on individual professionals, and knowledge amongst the wider medical community remained limited. There remained a general lack of knowledge of the existence of autism, so that most had not even heard of the disorder, nor did it receive mention in most medical textbooks at that time.
1980's
By the early 1980’s there began a slow growth of ‘awareness’ of autism among some professionals, such that they were aware of the existence of this condition. However, their knowledge was often marked by the belief that it was a form of mental illness or that it was a variant of mental retardation. This confusion about the distinction between mental retardation and autism and psychiatric illnesses and autism prevented individuals with autism from accessing treatment that was appropriate to their needs.
Late 1980 onwards
From the late 1980’s through today, autism in India has experienced an intense period of activity relative to the previous decades.
The release and subsequent Academy Award for the film ‘Rainman’ in 1988 brought autism to the consciousness of certain sections of the population in India, just as it did in many other countries. Around the same time, several parents in India took the initiative of writing in the media about autism, speaking to students, and creating awareness in the community.
The current movement for autism and India traces its roots to 1991, when Action For Autism (AFA) was founded to advocate for children and adults with autism and their families. In this way, much of the recent history of autism in India is intertwined with the initiatives that AFA has undertaken.
AFA began publication of its journal Autism Network in 1994.
In addition to the work by AFA, the Karnataka Parents Association for Mentally Retarded Children (KPAMRC) initiated a one-year training focused on autism in 1996.
By the late 90s a few autism specific organisations had begun in different parts of the country, as well as a few schools, chief among them Asha in Bangalore, Ashiana Institute for Autism in Mumbai, Communication DEALL in Bangalore, Development Centre for Children with Autism (DCCA)in Hyderabad, Priyanj in Mumbai, and We Can in Chennai. ‘Forum for Autism,’ a parent support group started in Mumbai.
In 1998, Action For Autism held a training session by a visiting international expert, the first of a succession of still continuing events. Between 1998 and 1999 a series of articles on autism were released to the media to create awareness. The Awareness project for Paediatricians was begun in the same year. Referrals from these professionals skyrocketed following this campaign.
In 2000, a boy with autism from Bangalore, Tito Mukhopadhyay, published his first book, Beyond the Silence: My Life, the World and Autism. The book includes writings from when he was between eight and eleven years old, and brought international attention to Tito and his mother’s methods for teaching him.
After campaigning with the RCI for years, AFA’s teacher training programme, Diploma in Special Education (Autism Spectrum Disorders), was given formal recognition in 2003. The programme had been running since 1994.
By the early 2000s, several additional parent organisations for autism had formed, among them Autism Society West Bengal, CATCH in Bhubaneswar and Pathways in Pune. At the time of writing there are around 79 schools and organisations all over India that specialise in teaching children with Autism.
For decades, the prevalence of autism in India (as in many developing countries) has been unknown; all stated estimates are based on rates established in Western countries. In 2008 several studies were funded by Autism Speaks, USA, to address this issue.
In June 2009, Zee TV, an Indian television network, with a global viewership of 500 million, launched a serial called Aap Ki Antara (“Yours,Antara”). The plot centred on a five-year old girl with autism. The serial greatly contributed to raising awareness in that many became aware of the fact that there was a condition by that name.
As these milestones illustrate, awareness of autism in India has experienced tremendous growth in less than a decade. Growth has occurred in numerous domains: diagnosis, treatment and educational options, parental involvement, vocational options, human resource development, and legislation.
Source:
History of Autism in India, Autism India
Further reading:
Every 1 in 100 children below 10 yrs has autism in India. The epidemic needs better care, ThePrint, 2022
An Indian mother opens up about her family's journey with autism, Vogue India, 2021
What is Autism? Know more about its Sign & Symptoms, Narayan Seva Sansthan, 2020
Autism cases rise in last two decades, ToI, 2018
Autism Spectrum Disorder: An Indian Perspective, SM Group, 2018
India and Autism, By Savita Malhotra & Ruchita Shah in Encyclopedia of Autism Spectrum Disorders, Springer, 2017
The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder, By Miraj U. Desai et al, Transcult Psychiatry, 2012
History of Autism-India, Action for Autism (AFA)
Data & Statistics on Autism Spectrum Disorder
Prevalence
About 1 in 44 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article].ASD is reported to occur in all racial, ethnic, and socioeconomic groups. [Read article]
ASD is more than 4 times more common among boys than among girls. [Read article]
An amount of Rs 11,922 crore has been allocated for the Department of Social Justice and Empowerment and Rs Rs 1212 crore for the Department of Empowerment of Persons with Disabilities in the financial year 2022-23
