The Bold Voice of J&K

World Autism Awareness Day

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Dr Aditi Bakshi

United Nations General Assembly (UNGA) unanimously declared April 2 as World Autism Awareness Day (WAAD) to highlight the need to help improve the quality of life of those affected with autism and to recognize their rights so that they could lead a full filling and meaningful life as an integral part of society.
The Word autism is derived from the word “Auto” which means children are locked within themselves. Word Autism was first used by a psychiatrist Leo camer in 1943 who described it as “Early Infantile autism” Today it is considered to be a severe form of a broader group of disorders referred to as pervasive developmental disorders. ASD has been the focus of debate in recent years largely as a result of multinational reports of increase in its prevalence from past 40 years, which can be attributed to greater public awareness.
What it means to be on Autism spectrum? Autism spectrum disorder is a neuro development disorder characterized by impairment in several areas of development (apparent before age of 3 years)typically verbal and nonverbal communication, social interaction, sensory experience, affected individuals exhibit repetitive and stereotypic movements/actions, difficulties in adapting to changes, lack of imaginative play, display anger tantrums and characteristics that appear in wide variety of combinations ranging from mild to severe hence referred it is referred to as ‘Spectrum’.
Early signs of autism
* Avoids eye contact
* No response to name by 9 months
* Does not show different facial expressions by 9 months.
* No interactive play by 12months.
* No pointing by 18 months.
* Does not show interest in joining other children in play by 36 months. No pretend play by 48 months of age
* Lines up toys
* Obsessive interest. Fixity to routines
* Gets upset by minor changes
* Rocks body, flap hands, spins in circles, self hitting {in anger or excitement}
Not all or any of these symptoms may be present in same individual or affected individual. Some symptoms show up within 12 months of life while others make take 24 months to show up when they stop gaining new skills or loose previously acquired skills (termed as regression) also some people without ASD might also have some of these symptoms.
At what age can ASD be diagnosed? ASD can sometimes be detected at 18 months or younger by 2 years of age, a diagnosis by experienced professional can be considered reliable. However, many children don’t receive a final diagnosis until they are much older. A definitive diagnosis may generally be delayed for upto 5 years of age, as by this age, with early intervention, many children show significant improvements in signs and symptoms to be able to join a normal/inclusive school alongside their neurotypical counterparts
What causes autism? Autism has no single identified cause however there is a strong evidence to suggest Genetic and Environmental factors (post natal neurological infections and fragile X syndrome etc.) being primarily responsible. Some Explanations like bad parenting, post natal maternal depression, bipolar disease, non affectionate/careless, overprotective parents and so on have largely been dismissed as Myths owing to lack of proven scientific evidence/Research.
Risk factors
* Having siblings with asd
* Certain genetic or chromosomal conditions e.g. fragile x syndrome, tuberous sclerosis.
* Parents with older age
* Experiencing complications at birth
In India autism affects 1 in 500 children. ASD affects one and a half million population world over. It is 4 times more prevalent in boys than girls with no known racial, ethnic & social boundaries.
Characteristic Features:
1) Language and Communication problems:
* Delayed Speech: only 50 per cent autistics eventually develop useful speech,
* Lack of communicative intent,
* Parrot like involuntary speech (words or phrases)referred to as Echolalia,
* Use of Repetitive words/phrases/sounds/babbling that are out of context, may or may not carry any meaning.
2) Difficulty in Social Interaction includes difficulty in social reciprocity, establishing peer relationships, showing affection, poor eye contact.
3) Behavior problems, repetitive behaviors and mannerisms (flapping hands, rocking body, spinning self in circles) obsessions, tics, self injurious behaviors, Aggressive behaviors, impulsivity, hyperactivity.
4) Issues with Sensory Integration and bodily movements: over or under sensitivity to sensory stimuli, abnormal posture and bodily movements leading to unusual reactions to sensory stimuli like touch, feel, see, hear, smell.
5) Intellectual functioning Impacted: ASD occurs in children at all levels of intellectual development from gifted ones to those that exhibit low IQ’s with Mental Retardation. Majority individuals with autism are identified as having mental retardation of nearly 75 per cent (exhibiting an IQ below 70 on standard tests), difficulty focusing on tasks, problem paying attention, learning disability.
6) Unusual Emotional Reactions: Unusual mood, emotional reaction, anxiety, stress, excessive worry, unaware of danger, lack of fear or more fear.
7) Resistance to change, preference for sameness &predictability: predictable routines and environment are preferred by autistics (even slightest change in routine can be stress full may lead to socially inappropriate behaviors, meltdowns etc) symmetry is often important (line up toys, everything should be in order)
ASD and associated co morbidities
4A notable feature of ASD is that 2 children with a same diagnosis of Autism may exhibit different symptoms.
4It has also been noted that characteristic features of ASD may accompany other peadiatric disorders as well, such as fragile X syndrome or tuberous sclerosis. In order to Achieve correct diagnosis it is essential to differentiate ASD from other pervasive developmental disorders (PDD) like Asperger’s syndrome in which child exhibits restricted interest, behaviors, impaired social interaction but no clinically significant general delay in language with average or above average intelligence. Pervasive development and disorders not otherwise specified (PDD) where child does not meet the criteria for specific diagnosis but there is severe and pervasive impairment in specified behaviours. Rett’s disorder which to date is only known to occur in girls where in there is period of normal development followed by loss of previously acquired skills and emergence of repetitive hand movements beginning spontaneously at the age of 1 to 4 years. Childhood Disintegrated Disorder where in the child exhibits normal development for first 2 years followed by significant loss of previously acquired skills ASD must also be differentiated from ADHD (Attention Deficit Hyperactivity disorder) another childhood disorder which present signs similar to ASD (characterized by: hyperactivity, difficulty focusing/paying attention hence avoidance, impulsivity, hard time communicating} and may occur independently or in association with ASD but has a different treatment approach.
There is no known cure for autism. Children are either born with the disorder or with a potential to develop the ASD symptoms. It does not mean that nothing can be done to help the child with autism. Early diagnosis and Early intervention lead to significantly improved long term outcomes.
How is autism diagnosed? There are no definitive medical tests. Medical examination does helps to rule out other problems unrelated to autism for example, Hearing impairment, lead poisoning, development or behavior disorders, mental retardation, eccentric habits. The diagnosis is usually carried out by a team comprising of psychologist, neurologist, Development pediatrician, Speech and language therapist, Occupational therapist and others. The team uses observation, interviews, specific checklist/screening tool developed for autism screening purpose.
What is early intervention and its importance. Early intervention (EI) is defined as the services delivered to children in infancy to about the age of 6 years. Research shows that EI makes a dramatic impact on reducing the symptoms of autism as young brains are most flexible. It begins with knowing and observing the development milestones and tailoring a comprehensive treatment program for the child. Several treatment approaches are being used to cater to different difficulties and conditions associated with spectrum and sometimes a combination of different treatment approaches may be planned for improved results.
Focus on changing behaviors by understanding what happens before and after the behaviour includes: Applied behavior analysis (ABA) based upon Reinforcing positive behaviours and gradually decreasing negative or unacceptable behaviours
Discrete Trial Training (step by step instructions to teach desired behaviour ) and Pivotal Response Training (takes place in natural setting rather than clinical setting )
* Another approach is known as Floortime involves social and emotional skills
* The TEACCH program: uses picture cards and other visual cues
* Play Therapy (learning via play, child directed methodology)
* Other behavioural approaches: Modeling, video modeling, peer mediated intervention, social stories, behavior momentum {increases motivation when a challenging task is required}
Developmental Approaches includes
a)Occupational therapy involves teaching skills for independent living for instance dressing bathing eating relating to people. Includes :
* Sensory Integration Therapy improves response to both restrictive and overwhelming sensory input
* Physical Therapy improves physical skills
* Brain Gym Exercises includes specific exercises to activate certain specific areas of brain and hence improve the overall all results generated with occupational therapy
b) Speech and language therapy helps improve understanding and use of speech language and overall communication. School Readiness Program includes facilitated peer interaction, Group therapy program.
Others therapies in use Art therapy, Music therapy, Dance therapy, yoga therapy, primitive reflex therapy, Reiki healing, play therapy, Neurolinguistic planning (NLP), RDI and so on.
Earlier the child receive early intervention (EI) more likely will it be possible for them to reach their full potential How much therapy is sufficient to see notable results? 20 to 40 hours a week is ideal.
Usefulness of Pharmacothearpy /Medications for autism: A huge variety of medications have been used to treat autism, to be prescribed only by a registered/ licenced medical practitioner. Includes Antipsy chotics,Anti-depressants, amphetamines, psychedelics and megavitamins. some commonly used medicines:
* Fenfluramine helps in decreasing behavior symptoms, helpful in increasing IQ
* Heloperidol decreases hyperactivity and abnormal behavioral symptoms
* Antiepileptic medications almost 33 per cent autistic patients develop epilepsy and require antiepileptic medications
* Melatonin, sizodon for patients with Sleep problems
Notably very few medications have shown any promising results and none of the medicines can cure Autism. Medicines do help alleviate some medical symptoms of associated co-morbid conditions that accompany ASD.
Medical issues that commonly accompany autism:
* ASD is often accompanied with gastrointestinal disorders (like Constipation and diarrhea, children are often gassy and bloated), other issues are sleep disorders, epilepsy, seizures, eating disorders (difficulty eating diverse food types leading to underweight and malnutrition and weakness) hypotonia etc. Do special diets help? Is there a connection between child’s behavior and certain foods? There is no scientific evidence to prove a connection between nutrition and ASD. To some extent diet influences everyone’s behavior but it is not yet clear that diet influences behavior of children affected with ASD differently from others. To be on a safer side one can get test done for food sensitivities. According to an independent study diet makes a difference only to a relatively small number of children. One also has to decide if the whole family can follow this new diet. Internet is full of varied, unusual and often misleading treatments for autism offered to desperate parents. Parents must therefore make an informed and wise decision to not fall prey to harmful treatments.
Treatment depends on individual (treatment is usually tailor made according to specific individual needs). In most cases a combination of treatment methods is more effective. Autism usually requires lifelong intervention and treatment. Scientists are searching or methods of treatment but the real question is what aspect of autism can be cured? You love your child more than anything in this world in the early days of your child’s life, long before any diagnosis is made there are hundreds hopes, dreams and plans you have for your child but when the child is diagnosed with an Autism spectrum disorder you may experience many doors are suddenly closed because this diagnosis often accompanied by a long list of dire predictions like the child will never talk, have friends, job or marriage. Avoid getting defensive, instead turn for help. Clinical inputs can help ensure smoother acceptance into society by working on difficulties, skills and behaviors. Parents have to be realistic about their expectations of normalcy in behaviours and independent living on long term basis, while working with their wards. It is important to focus on gains made with intervention, being open and honest about the child and be ready with answers if people around question you. It is crucial that you understand that you don’t have to accept the limits placed on your child, your child has capacity for learning, communicating, experiencing real happiness and developing warm loving and satisfying relationships. There is no better way of celebrating World Autism awareness day (WAAD) than by working on ways to increase our own understanding of not only Autism spectrum disorder features but also how it impacts lives of affected individuals & there families, thereby promoting kindness and inclusivity in society and world at large.

(The author is BDS, Post-Graduate Diploma holder in Special Education).

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