CHILDREN WITH DISABILITY: AUTISM SPECTRUM
What is Autism Spectrum Disorder?
Autism spectrum disorder (ASD) is a complex developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors. The effects of ASD and the severity of symptoms are different in each person.(APA, 2018).
Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.
to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a guide created by the American Psychiatric Association used to diagnose mental disorders, people with ASD have:
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Difficulty with communication and interaction with other people
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Restricted interests and repetitive behaviors
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Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life
Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience. ASD occurs in all ethnic, racial, and economic groups. Although ASD can be a lifelong disorder, treatments and services can improve a person’s symptoms and ability to function.
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STATISTICS
Recent estimated prevalence of ASD in India ranges from 0.15% to 1.01% in various studies, depending on the screening method used, and the areas surveyed. In the INCLEN study, the prevalence of ASD was 1 in 125 in children 3-6 years and 1 in 85 in children 6-9 years of age. The prevalence in rural areas was 0.90%, 0.6% in hilly regions, 1.01% in urban areas, 0.1% in tribal areas and 0.61% in the coastal regions.
2. Identify the problem
People with ASD have difficulty with social communication and interaction, restricted interests, and repetitive behaviors.
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Social communication/interaction behaviors may include:
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Making little or inconsistent eye contact
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Rarely sharing enjoyment of objects or activities by pointing or showing things to others
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Failing to, or being slow to, respond to someone calling their name or to other verbal attempts to gain attention
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Having difficulties with the back and forth of conversation
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Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
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Having facial expressions, movements, and gestures that do not match what is being said
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Having an unusual tone of voice that may sound sing-song or flat and robot-like
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Having trouble understanding another person’s point of view or being unable to predict or understand other people’s actions
2. Restrictive/repetitive behaviors may include:
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Repeating certain behaviors or having unusual behaviors. For example, repeating words or phrases, a behavior called echolalia
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Having a lasting intense interest in certain topics, such as numbers, details, or facts
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Getting upset by slight changes in a routine
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Being more or less sensitive than other people to sensory input, such as light, noise, clothing, or temperature.
3. Ecological Framework
ASDs may significantly limit the capacity of an individual to conduct daily activities and participate in society. ASDs often negatively influence the person’s educational and social attainments as well as employment opportunities.
ASDs often impose significant emotional and economic burdens on people with these disorders and their families. Caring for children with a severe form of the condition may be demanding, especially where access to services and support are inadequate. Therefore the empowerment of caregivers is increasingly being recognized as a critical component of care for children with ASD.
4. Treatment Process
DIAGNOSING ASD
ASD can usually be reliably diagnosed by the age of two. Diagnosis in young children is often a two-stage process.
Stage 1: General Developmental Screening During Well-Child Checkups
The American Academy of Pediatrics recommends that all children be screened for developmental delays at their 9-, 18-, and 24- or 30-month well-child visits and specifically for autism at their 18- and 24-month well-child visits. Additional screening might be needed if a child is at high risk for ASD or developmental problems. Those at high risk include children who have a family member with ASD, have some ASD behaviors, have older parents, have certain genetic conditions, or who were born at very low birth weight. Children who show developmental problems during this screening process will be referred for the second stage of evaluation.
Stage 2: Additional Evaluation
This second evaluation is with a team of doctors and other health professionals who are experienced in diagnosing ASD.
This team may include:
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A developmental pediatrician—a doctor who has special training in child development
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A child psychologist and/or child psychiatrist—a doctor who has specialized training in brain development and behavior
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A neuropsychologist—a doctor who focuses on evaluating, diagnosing, and treating neurological, medical, and neurodevelopmental disorders
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A speech-language pathologist—a health professional who has special training in communication difficulties
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The evaluation may assess:
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Cognitive level or thinking skills
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Language abilities
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Age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting
As ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include blood tests and hearing tests.
ASD symptoms in older children and adolescents who attend school are often first recognized by parents and teachers and then evaluated by the school’s special education team. The school’s team may perform an initial evaluation and then recommend these children for additional testing.
These subtle communication issues may include problems understanding tone of voice, facial expressions, or body language. Older children and adolescents may have trouble understanding figures of speech, humor, or sarcasm.
Diagnosing ASD in adults is often more difficult than diagnosing ASD in children. In adults, some ASD symptoms can overlap with symptoms of other mental health disorders, such as anxiety or attention-deficit/hyperactivity disorder (ADHD).
Information about the adult’s developmental history will help in making an accurate diagnosis, so an ASD evaluation may include talking with parents or other family members. Getting a correct diagnosis of ASD as an adult can help a person understand past difficulties, identify his or her strengths, and obtain the right kind of help.
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TREATMENT AND REHABILITATION
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There is no single treatment for autism. Treatments can include intensive skill-building and teaching educational sessions, known as applied behavior analysis (ABA), and many more interactive, child-centered versions of behavior treatments. Treatment may also involve special training and support for parents, speech and language therapy, occupational therapy, and/or social skills training.
In addition to treatment, regular and special education classrooms can be changed to help students with autism. Many students with autism can function better if the day is consistent and predictable. It is also helpful if the information is presented so the student can learn by seeing as well as hearing and if students get to play and learn with non-disabled peers. A federal law — the Individuals with Disabilities Education Act, or IDEA — requires that special services be available to children identified with a disability. The services can include early intervention, support for birth to three years, and special education for children aged three to 21.
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DIAGNOSTIC TOOLS
Many clinicians are diagnosing ASD based on DSM-IV or DSM-V evaluation. Diagnostic tools include ADOS, ADI-R, and CARS. The available diagnostic instruments for ASD are patented and expensive, and ADOS-G and ADI-R use requires mandatory international accreditation. The tools are not available in different Indian languages, with the exception of ADOS, which has been translated into Hindi and Bengali, but the translations are not freely available.
Indigenous Tools Developed In India: To overcome several of the limitations of internationally available tools, standardize diagnosis and thereby facilitate early intervention for children with autism, two tools have been developed in India- INCLEN Diagnostic Tool for Autism Spectrum Disorder and Indian Scale for Assessment of Autism (ISAA).
5. Myth, Facts, and New Technologies
Myth: Autism is a mental health disorder.
Truth: Autism is a neurological disorder. Studies of people with autism have revealed abnormalities in brain structure and neurotransmitter levels. What is commonly overlooked is that individuals with developmental disabilities are twice as likely to have a co-occurring mental health disorder that also needs treatment or, at times, may render them in need of acute mental health stabilization, while also taking into consideration the developmental disability.
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Myth: All individuals with autism have savant abilities.
Truth: While there is a higher prevalence of savant abilities among those with autism, only about 10 percent of individuals with autism exhibit savant abilities. Some individuals with autism have what are called “splinter skills,” meaning skills in one or two areas that are above their overall performance abilities.
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Myth: Autism can be cured.
Truth: There is currently no cure for autism spectrum disorders. However, early and intensive behavioral treatment can, in many cases, reduce the severity of symptoms and help individuals develop adaptive skills for daily living, emotion and behavior regulation, and social engagement.
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NEW TREATMENT PERSPECTIVES IN ASD
In the past 10 years, research on autism spectrum disorders (ASD) has made considerable progress, leading to the identification of a number of genes and signaling pathways associated with ASD pathogenesis.
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ASD children treated with a ketogenic diet (KGD) showed decreased seizure frequencies and improved learning abilities and social skills
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Stimulation of excitatory synapses and neuronal density has been achieved with insulin-like growth factor 1 (IGF-1) administration and it has been positively tested in two single gene disorders associated with ASD, Rett syndrome, and Phelan-McDermid syndrome.
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A novel theatre intervention that combines the interaction of trained peers with patients to facilitate the performance-based theatrical treatment.
6. References
Rights of Persons with Disabilities (RPWD) Act, 2016 has included ASD under the category of disabilities. The RPWD Act recognizes the equality of persons with disabilities and prohibits direct or indirect discrimination on the basis of disability. Subsequent to certification, children with ASD can avail of special benefits like inclusive education, scholarships, free travel in state transport buses, railway concessions, loans for self-employment, and assistance for higher education.
The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities Act, 1999 was constituted by the Central Government as a legal entity and was set up in the year 2000.
The objective of the Trust is to
* enable and empower persons with disability
* facilitate support to registered organizations
* Deal with problems of disabled persons who do not have family support
* promote measures for their care and protection in the event of loss of parents and guardians
* evolve a procedure for appointment of guardians and trustees so that equal opportunities, protection of rights, and full participation of such persons is ensured.
The schemes available under The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities Act, 1999 are
* Spandan(Special Performance Awards)
Spandan is the new name given to the National Trust Awards for a special performance in different sectors by people with disabilities.
* Samarth Scheme (for residential services)
* Group Home And Rehabilitation Activities Under National Trust Act for Disabled Adults (to address parents’ concerns about what is after them)
* Niramaya(Health Insurance Scheme)
* GyanPrabha(Scholarship) Scheme
* UddyamPrabha(Financial Incentive) Scheme
* Arunim(marketing initiatives for products made by persons with disabilities)
* * Self-employment
* Income Tax Related Exemptions
* Education
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Organizations
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Jewel Autism Center and Child Developmental Centre, Kottayam
Contact no: 9745451747
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Jeevaniyam Hospital and Research Center For Autism, Pallathu Road,, Thammanam, Kochi, Kerala 682032
Contact no: 099615 18687
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Amrita Institute of Medical Science, Ponekkara, P. O, Kochi, Kerala 682041
Contact no: 04846681234