Swalinta (Autism) - System Design Project Document


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It is our system design Project documentation, which shows the work done by us and the process which we followed to come up with solutions.
This approach is called system design approach and anyone can use this method to derive further solution regarding swalinta (autism) or any social issue you want to address.

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Swalinta (Autism) - System Design Project Document

  1. 1. Autism LoyhurkProject By : SUDHIR MOR & MITIN ANAND
  2. 2. Digital publications of students for private circulation only.PGDPD Product Design 2012National Institute of Design, IndiaAuthor: Sudhir Mor / Mitin AnandText: Mitin Anand / Sudhir MorSketches & Illustrations: Sudhir Mor / Mitin AnandImages: Sudhir Mor / Mitin AnandAll right reserved under international copyright conventions.No part of this book may be reproduced ortransmitted in any form or by any means, electronicor mechanical, including photocopy, recording orany other information storage and retrieval system,without prior permission in writing from the author.Edited by: Sudhir Mor / Mitin AnandProcessed at NIDPrinted by:
  3. 3. 01 Acknowledgment 08 Phase - IV Analysis of Research02 Introduction System Model Subsystem Study03 Synopsis 09 Phase - V04 Project Brief Ideas & Concepts05 Phase - I (Startup) 10 Phase - VI Selection of Topics Final Solutions Why Autism? Research Methodology 11 Conclusion 12 Biblography06 Phase - II (Research Secondary) 13 Annexure What is Autism? Spread of Autism 14 About Us Diagnosis & Awareness Polices & Concessions07 Phase - III (Research Primary) Case Studies Interviews Color Interaction Puzzel CONTENTS
  4. 4. Foremost, I would like to express my sincere gratitude to our guide Mr. Praveen Nahar for the continuous support, for his patience, motivation, enthusiasm, and immense knowledge. His guidance helped us in all the time of research and writing of this document. My sincere thanks also goes to Ms. Falguni joshi for critical feedback and numerous suggessions, Ms. Sukeshi Shah for giving us uncharted permission in Polio foundation, Dr Anwar ali for his valuable feedbacks and encouragement. I thank the employees in BM Institute, Polio foundation and Kalrav: Dr. Asha, Dr. Madhu Singh, Ms. Vajayanti, Ms. Jasmin and Anil bhai, for the stimulating discussions, for the suggessions, and for their patience. In particular, we are grateful to Mr. Lochen Kharawala and his pets for the priceless dog session and the willingness to do everything possible for the kids. Last but not the least, we would like to thank the family members of autistic kids, for spending time with us inspite of thier busy schedule.ACKNOWLEDGMENT
  5. 5. The Elephant Metaphore of Reality Overview of Systems ThinkingINTRODUCTION Systems thinking has its foundation in the field of system dynamics, founded in 1956 by MIT professor Jay Forrester. Professor Forrester recognized the need for a better way of testing new ideas about social systems, in the same way we can test ideas in engineering. Systems thinking allows people to make their understanding of social systems explicit and improve them in the same way that people can use en- gineering principles to make explicit and improve their understanding of mechanical systems. The Systems Thinking Approach The approach of systems thinking is fundamentally different from that of traditional forms of analysis. Traditional analysis focuses on the separating the individual pieces of what is being studied; in fact, the word “analysis” actually comes from the root meaning “to break into constituent parts.” Systems thinking, in contrast, focuses on how the thing being studied interacts with the other constituents of the sys- tem—a set of elements that interact to produce behavior—of which it is a part. This means that instead of isolating smaller and smaller parts of the system being studied, systems thinking works by expanding its view to take into account larger and larger numbers of interactions as an issue is being studied. This results in sometimes strikingly different conclusions than those generated by traditional forms of analysis, especially when what is being studied is dynamically complex or has a great deal of feedback from other sources, internal or external. The character of systems thinking makes it extremely effective on the most difficult types of problems to solve: those involving complex issues, those that depend a great deal dependence on the past or on the actions of others, and those stemming from ineffective coordina- tion among those involved.
  6. 6. Use of Systems Thinking According to this way of thinking, the more pesticide is applied, the fewer insects there will be damaging crops, and the less total crop damage. The temptation is to say that eliminating the insects eating the crops will solve the problem; however that often turns out to not be the case. The problem of crop damage due to insects often does get better - in the short term.An example that illustrates the difference between the systems thinking perspective and the perspective taken by raditional forms of Unfortunately, the view diagrammed above represents only part of the picture. What frequently happens is that in following years theanalysis is the action taken to reduce crop damage by insects. When an insect is eating a crop, the conventional response is to spray the problem of crop damage gets worse and worse and the pesticide that formerly seemed so effective does not seem to help anymore.crop with a pesticide designed to kill that insect. Putting aside the limited effectiveness of some pesticides and the water and soil pollutionthey can cause, imagine a perfect pesticide that kills all of the insects against which it is used and which has no side effects on air, water, or This is because the insect that was eating the crops was controlling the population of another insect, either by preying on it or bysoil. Is using this pesticide likely to make the farmer or company whose crops are being eaten better off? competing with it. When the pesticide kills the insects that were eating the crops, it eliminates the control that those insects were applying on the population of the other insects. Then the population of the insects that were being controlled explodes andIf we represent the thinking used by those applying the pesticides, it would look like this: they cause more damage than the insects killed by the pesticide used to. In other words, the action intended to solve the problem actually makes it worse because the way its unintended side effects change the system ends up exacerbating the problem. In fact, some studies suggest that a majority of the 25 insects that cause the most crop damage each year became problems to begin with 0 because of exactly this cycle. Graphically, the way this happens can be represented as: Pestiside Application −−−−← Insects Damaging Crops (Reading the Diagram: The arrow indicates the direction of causation - that is, a change in the amount of pesticide applied causes a changein the numbers of insects damaging crops. The letter indicates how the two variables are related: an “s” means they change in the samedirection - if one goes up then the other goes up, and an “o” means they change in the opposite direction - if one goes up then the othergoes down (or vice versa). This diagram is read “a change in the amount of pesticide applied causes the number of insects damaging cropsto change in the opposite direction.” The belief being represented here is that “as the amount of pesticide applied increases, the number ofinsects damaging crops decreases.”)
  7. 7. A Better Way to Deal with Our Most Difficult ProblemsAccording to this understanding, the greater the pesticide application, the smaller the numbers of Insect A (the original pest) that willeat the crop. This leads to an immediate decrease in the numbers of insects eating the crop (note that this is the effect those applying thepesticides are intending). So many important problems that plague us today are complex, involve multiple actors, and are at least partly the result of past actionsHowever, the smaller numbers of insect A eventually lead to greater numbers of Insect B (the hash marks on the arrow indicate a delay), that were taken to alleviate them. Dealing with such problems is notoriously difficult and the results ofbecause insect A is no longer controlling the numbers of insect B to the same extent. This leads to a population explosion of insect B, conventional solutions are often poor enough to create discouragement about the prospects of ever effectively addressing them. One ofto greater numbers of insect B damaging crops, and to greater numbers of insects damaging the crop, exactly the opposite of what was the key benefits of systems thinking is its ability to deal effectively with just these types of problems and tointended. Thus, although the short-term effects of applying the pesticide were exactly what was intended, the long-term effects were quite raise our thinking to the level at which we create the results we want as individuals and organizations even in those difficult situationsdifferent. marked by complexity, great numbers of interactions, and the absence or ineffectiveness of immediately apparent solutions.By seeing the whole picture, the team was able to think of new possibilities that they had not come up with previously, in spite of their bestefforts. Systems thinking has the power to help teams create insights like these, when applied well to asuitable problem.
  8. 8. SYNOPSISThis document is a compilation of the work done as a part ofour system design project. We (Mitin Anand and Sudhir Mor)are Final year students of Product design discipline at NationalInstitute of Design.The project is to understand autism and the people linked toit, understand the whole system and come up with solutionsthat can have a substantial impact. We made visits to institutes,rehabilitation centers and various houses. An intense research wasconducted to understand the mental condition, treatments andthe people whom they encounter in their daily life. This projecthelped us to step out of mundane ways of doing things. It helpedus to understand how various sub systems interact within thesystem.Understanding the system lead our thinking to a different levelwhich helped us to take decisions which can help the system inthe long run.
  9. 9. PROJECT BRIEFUnderstanding Autism and the difficulties faced by peopleassociated to it (patient, parents, doctors, teachers etc).Understanding this soft system and coming up with a favorablesolutions.
  10. 10. Selection Of Topics We started our brain storming session by putting all the possible system area on a sheet and then selected few to study further so that we can find which to choose from them. Therefore we selected 5 system areas out of those all. These are written below.PHASE - I 1) Railways Startup 2) Special Economic Zones (SEZ) 3) Autism Spectrum Disorder 4) Animal Trading 5) Manufacturing Industries and finally we selected Autism Spectrum Disorder as our system area to work on.
  11. 11. Brief details about the 5 topics we selected:Indian Railways Manufacturing IndustriesIndian Railways is owned and operated by the Government of India through the Ministry of Railways. Indian Railways Manufacturing is the use of machines, tools and labor to produce goods for use or sale. The term may refer to a rangehas 114,500 kilometres of total track over a route of 65,000 kilometres and 7,500 stations. It has the worlds fourth largest of human activity, from handicraft to high tech, but is most commonly applied to industrial production, in which rawrailway network after those of the United States, Russia and China. The railways carry over 30 million passengers and materials are transformed into finished goods on a large scale. Such finished goods may be used for manufacturing other,2.8 million tons of freight daily. It is the worlds fourth largest commercial or utility employer, by number of employees, more complex products, such as aircraft, household appliances or automobiles, or sold to wholesalers, who in turn sellwith over 1.4 million employees. As for rolling stock, IR owns over 240,000 (freight) wagons, 60,000 coaches and 9,000 them to retailers, who then sell them to end users – the "consumers".locomotives. We were interested in understanding the system and coming up with solutions, since the manufacturing sector is closelyIt is the enormity of the system that interest us the most, a favorable solution can help millions of people travelling daily. connected with engineering, industrial design and people.Special Economic Zone Animal TradingA Special Economic Zone (SEZ) is a geographical region that has economic and other laws that are more free-market- There is no proper system employed in rural areas for trading animals, the whole trading runs on the basis of trust. Sinceoriented than a countrys typical or national laws. "Nationwide" laws may be suspended inside a special economic zone. it is a very good example of soft system, we thought of coming up with new ways of trading animals keeping in mind the social and cultural factors.The category SEZ covers, including Free Trade Zones (FTZ), Export Processing Zones (EPZ), Free Zones (FZ),Industrial parks or Industrial Estates (IE), Free Ports, Urban Enterprise Zones and others. Autism Spectrum DisorderUsually the goal of a structure is to increase foreign direct investment by foreign investors, typically an internationalbusiness or a multinational corporation (MNC). Autistic children can hear, see and feel, still they have difficulty in expressing what their senses tell them. They are sometimes even better than normal kids, still they are not treated well in society. They are treated like “dirt” (due to lackThe aim was to study, analyze and resolve the complex system containing innumerable subsystems. of awareness). Providing a clear structure in the minds of an autistic kid can have a positive effect in all stages of his/her life.
  12. 12. Why Autism as a Project? Loyhurk Swalinta Soon after our first visit to autism center we were sure about our system design project. We were uncertain about the outcome but very certain about the topic. We have come across various toys and games for autisticis the Hindi translation of Autism kids but do they really help them in the long run? Why cant we Autism be cured? Are there some loop holes in the treatment methods adopted? these were the initial passing thoughts. To bring about an impact in their lives, intense reaserch and through understanding of the system was required. We were ready to take up this challange.
  13. 13. ia Start in Ind Research Methodology d s sprea m and it Autis ut ing abo dings Study Understanding Autistic kid and surroun Recording o bservations, Case studies ch Documentation of resear Research da ta analysis s uick solution are as and q inte rvention Finding Selecting Final Ide as rk e wo n of th tatio men Do cu End
  14. 14. What is Autism Spectrum Disorder (ASD)? Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. People with ASDs handle information in their brain differently than other people. Research - Secondory ASDs are "spectrum disorders." That means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when thePHASE - II symptoms start, how severe they are, and the exact nature of the symptoms. Types of ASDs There are three different types of ASDs: • Autistic Disorder (also called "classic" autism) This is what most people think of when hearing the word "autism." People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability. • Asperger Syndrome People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability. • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called "atypical autism") People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.
  15. 15. Signs and Symptoms Spread of Autism in India.ASDs begin before the age of 3 and last throughout a persons life, although symptoms may improve over time. Some childrenwith an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stopgaining new skills, or they lose the skills they once had.A person with an ASD might:• Not respond to their name by 12 months• Not point at objects to show interest (point at an airplane flying over) by 14 months• Not play "pretend" games (pretend to "feed" a doll) by 18 months• Avoid eye contact and want to be alone• Have trouble understanding other peoples feelings or talking about their own feelings• Have delayed speech and language skills• Repeat words or phrases over and over (echolalia)• Give unrelated answers to questions• Get upset by minor changes• Have obsessive interests• Flap their hands, rock their body, or spin in circles• Have unusual reactions to the way things sound, smell, taste, look, or feelDiagnosisDiagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at thechild’s behavior and development to make a diagnosis.ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can beconsidered very reliable. However, many children do not receive a final diagnosis until much older. This delay means thatchildren with an ASD might not get the help they need. • 1 out of 610 is Autistic • 1 out of 30 is directly or indirectly connected with Autism
  16. 16. Diagnosis, & Awareness of Autism DSM-IV (DSM-4) criteria for a diagnosis of autism Presently, there is no such medical test that can diagnose autism. Instead, specially trained physicians and psychologists administer autism-specific behavioral evaluations. Physicians use the Diagnostic and Statistical Manual (DSM) for Mental Disorders to determine whether a person has an autism spectrum disorder. The latest version of this manual is the DSM-IV. Its criteria for autism include the following: Often parents are the first to notice that their child is showing unusual behaviors such as failing to make eye contact, not I. A total of six (or more) items from heading (A), (B) and (C) with at least two from (A) and one each from (B) and (C): responding to his or her name or playing with toys in unusual, repetitive ways. For a description of early indicators of autism, see Learn the Signs. (A) Qualitative impairment in social interaction as manifested by at least two of the following: The Modified Checklist of Autism in Toddlers (M-CHAT) is a list of informative questions about the child. The answers Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture and gestures can indicate whether he or she should be further evaluated by a specialist such as a developmental pediatrician, neurologist, to regulate social interaction. psychiatrist or psychologist. (M-CHAT attached in Annexure) Failure to develop peer relationships appropriate to developmental level. From birth to at least 36 months of age, every child should be screened for developmental milestones during routine well visits. When such a screening—or a parent—raises concerns about a childs development, the doctor should refer the child to a specialist A lack of spontaneous seeking to share enjoyment, interests or achievements with other people, (e.g. a lack of showing, bringing or in developmental evaluation and early intervention. These evaluations should include hearing and lead exposure tests as well as pointing out objects of interest to other people). an autism-specific screening tool such as the M-CHAT. Among these screening tools are several geared to older children and/or specific autism spectrum disorders. A lack of social or emotional reciprocity. A typical diagnostic evaluation involves a multi-disciplinary team of doctors including a pediatrician, psychologist, speech and (B) Qualitative impairments in communication as manifested by at least one of the following: language pathologist and occupational therapist. Genetic testing may likewise be recommended, as well as screening for related medical issues such as sleep difficulties. This type of comprehensive helps parents understand as much as possible about their Delay in or total lack of the development of spoken language (not accompanied by an attempt to compensate through alternative childs strengths and needs. modes of communication such as gesture or mime). Sometimes an autism spectrum disorder is diagnosed later in life, often in relation to learning, social or emotional difficulties. As In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others. with young children, diagnosis of adolescents and adults involves personal observation and interview by a trained specialist. Often, a diagnosis brings relief to those who have long struggled with difficulties in relating socially while not understanding the source Stereotyped and repetitive use of language or idiosyncratic language. of their difficulties. A diagnosis can also open access to therapies and assistive technologies that can improve function in areas of difficulty and, so, improve overall quality of life. Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.
  17. 17. (C) Restricted repetitive and stereotyped patterns of behavior, interests and activities as manifested by at least two of the Policies and Concessions for ASDfollowing:Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity • Central Board of Secondary Education (CBSE) to allowd accomodations for students with autism in Feb 2009.or focus • An affordable, government sponsored health insurance plan for people with autism, mental disorders and multiple disabilities.Apparently inflexible adherence to specific nonfunctional routines or rituals • Banking Made Easier for Persons with Mental Disabilities by RBI.Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) • The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999.Persistent preoccupation with parts of objects • Income Tax Relief U/S 80DD for Parents/Guardians of Persons with Disabilities.II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:(A) Social interaction In detail you can check these on(B) Language used in social communication(C) Symbolic or imaginative play http://www.autism-india.org/india_legal.htmlhttp://www.autismspeaks.org/
  18. 18. Case Studies For research purposes and to study the behaviour of the autistic kids. We went to many organizations and institutes which are helping and training these special kids. Research - Primary So we went toPHASE - III 1) Polio Foundation 2) B.M. Institute of Mental Health 3) Kalrav Early Intervention Cnetre and spend lot of time with the kids and their trainer. So a brief profile and characterstics of evry kid we met is there in next pages.
  19. 19. Darshan Ankit BM Institute BM Institute 16 Years 18 Years Moderate Autistic Moderate AutisticUnlike all other patients at BM Institute, Darshan is very calm. He also has much better eye contact and understands when Ankit was perfectly normal when he was born and developed like a normal child. The doctors debate that it was a strokesomething has been told to him. Like many other autistic kids even Darshan walks on his toes. All normal kids learn the (a condition where brain doesn’t get enough supply of oxygen) that lead to autism. “He was about six months when he hadart of walking and balancing naturally. Autistic kids have to be taught all these basic things with much attention and care. a stroke, since then his condition has worsened” his mother recollects. His parents took him to a doctor back then andHis parents obviously thought “all he needs is a little time”, he would slowly learn the proper ways of walking. But over time appropriate medication was suggested by the doctor. The doctor never realized that he was continually having internalhis foot muscles stiffened and now he can only walk on his toes. “Darshan is calm and also listen to people when they talk. strokes, which was never exhibited by his body. He lost all the abilities he had imbibed and gradually entered the world ofThen why isn’t my son’s condition getting better?” a question that Darshan’s mother frequently ask the doctors. autism. There is no significant change in him even after 4 years of treatment at BM Institute.Observations:- Changes after treatment:- Observations:- Changes after treatment:-• Walks on toes (since childhood) • Less hyperactive • Loves to rotate things (like key chain etc) • Less Hyper in class• Moderate IQ • Understanding of color and shapes • Low IQ• Good hand eye coordination have improved • Likes music, it always keeps him calm• Not very hyperactive • Better hand eye coordination • Calm at home and generally hyper active in the classroom• Very fond of listening to news (probably the sound of it) • Doesn’t know how to wear shoe, but hands over to someone else• Moderate understanding of shapes and color when he needs to wear • Forceful teaching works on him
  20. 20. Polio Foundation Polio Foundation Vineet Darshak 4 Years 30 Years Mild Autistic Highly AutisticVineet was misdiagnosed with fukuyama disease, an inherited condition that predominantly affects the muscles, brain, As a kid Darshak was misdiagnosed as mentally challenged. Much later in his life doctors figured that he is highly autisticand eyes. It is a group of genetic conditions that cause muscle weakness and wasting (atrophy) beginning very early in life. and he was brought to polio foundation for treatment. Substantial changes can be observed after five years of treatmentDoctors came to this conclusion since vineeth was not able to walk, grasp things etc. It took about an year for the doctors at Polio foundation. Since he is highly autistic most of the better of institutes (private and trustee run organizations)to figure out that Vineeth’s muscles are perfectly fine and it is because of mild autism he is unable to walk. Because of mild didn’t take the risk of admitting him. Highly autistic patients are very unpredictable and might jeopardize other patients.autism Vineeth was unable to imbibe many things in life that other kids did naturally. Now, after two years of treatment at Darshak’s parents tried all possible treatment (they even tried Vedic treatment). Since there is a little change in hisPolio foundation there is considerable changes in his condition. condition after treatment at polio foundation, his parents always regret the fact that “why? Did it take this long for the doctors to diagnose”.Observations:- Changes after treatment:- Observations:- Changes after treatment:-• Very fond of objects (especially electronic objects and switches) • Started walking • Very sensitive to music, music keeps him calm • Eats without anyone’s help when food is served.• Only utters symbolic sounds, language has not developed yet • Started uttering symbolic sounds • Frequently tapping the desk in a rhythmic manner • Can distinguish some shapes• Hyper active • Hyperactivity reduced • No eye contact at all • Can identify some of his things (like shoe etc)• Can walk properly • Gained body strength • Constantly grinding teeth• Doesn’t like toys (especially the ones that have lights and sounds) • Can make better eye contact • High motor problem, Frequently moves his right arm to eyelevel• Gets violent while playing with fellow kids • Cannot express basic things like hunger etc.• Can easily figure out shapes• Mad about watching television
  21. 21. Sanket Sawant BM Institute BM Institute 21 Years 21 Years Moderate Autistic Moderate AutisticSanket was send to regular school till 5th grade. Like all other parents, his parents also felt that his condition might reduce Sawant is twin brother of Sanket. He was also send to regular school till 5th grade. Just like Sanket, his condition alsoonce he enters main stream. Just like all other cases it never did, instead the condition aggravated. aggravated after being sent to regular school. His mother claims that it is probably the teaching method or the lack of interest in teachers that is deteriorating her son’s condition.Observations:- Changes after treatment:- Observations:- Changes after treatment:-• Can read and write, if given a book fills up in no time • Less hyperactivity • Not curious • Less hyperactivity• Frequent swinging motion • Reading and writing skills have • Frequent swinging motion • Reading and writing skills have• Likes music deteriorated • Likes music deteriorated• Curious about new things • Better eye contact and listens to • Moderate IQ• Moderate IQ people • Moderate understanding of shapes and color• Very good understanding of colors and shapes
  22. 22. Rishi Vaishali BM Institute BM Institute 10 Years 34 Years Mild Autistic Moderate AutisticRishi is mildly autistic and is the only kid who also attends regular school. He has much better eye contact and also good Vaishali has been in BM Institute since her childhood. There is substantial improvement in her, since she has beenIQ. Only major problem is hyperactivity. Due to the same reason he cannot concentrate on most of the things. undergoing treatment for years. She never initiates conversations but answers promptly when asked something. Unlike other patients at BM Institute, she is assigned with activities involving reading and writing.Observations:- Changes after treatment:- Observations:- Changes after treatment:-• Hyperactive and violent • Hyperactivity reduced • Can read, write and speak fluently • Hyperactivity reduced• High IQ • Maintains eye contact• Less sensation towards sound • Very good understanding of shapes, colors etc• Better eye contact • Very much normal• Much better understanding of shape and color etc
  23. 23. Interviews Dr. Anwar Ali BM Institute Occupational Tharapist Dr. Anwar ali is an occupational thaparist at BM Institute. He has years of experience in the field of autism. Dr. Anwar ali was also involved in the establishment of Chethan institute (a wing of BM institute, specifically for autistic patients). Even though there are debates, Dr. Anwar ali firmly believes that autism is caused due to deffeciency in mirror neurons. Below are some of his observations. • Autistic kids are very attached to objects rather than people. Hence play is restricted to objects • Play related to imagination is not a part of them • They are very structured • No two autistic kids are same • Autism is a neurological disorder which becomes very psychological
  24. 24. Poli Foundation Dr. Madhu Singh Dr. Sukeshi Shah BM Institute Occupational Tharapist Coordinator CP CellDr. Madhu singh an occupational theparist ate BM institute and an occational visitor at Polio foundatation, without a doubt Being the coordinator of CP cell, she organizes various activities for kids affectd by CP and Autism. Once the IEP is prepared forfeels that an early diagnosis of autism is lacking in our country. She introduced us to various tools for diagnosis the M-CHAT, a child,she makes sure that the kid adhers to it. She is also involved in establishing a saperate cell for autism in Polio foundation.CARS etc. She clearly says autism cannot be cured, but can be certainly reduced to a grate extent if diagnosed early. She is conatantly tryingShe feels various factors accentuate autism in India, for eg cultural problems. If a child dosent learn to walk at the right age, to come up with activites that can help their condition. Some of her suggesions are given below.grand parents encourage it by saying "even his dad learnt to walk much later and its in the blood". Below are some of herobservations. • Textile printing workshops for autistic kids • Sensory garden for Polio foundation• Autistic kids are resistant to change • Pictorial representation of day to day activities for autistic kids• They are sensitive to light and sound• They get stimulated by sound, hence they throw glass or bang table etc• Evaluation is a very sensitive part of their life• They understand pictorials more that actions or words
  25. 25. Polio Foundation Anil Bhai Dr. Falguni Joshi Kalrav Special Kid Trainer Director Early intervention centreAnil Bhai makes sure that the kids has their daily dose of sensory integration, physiotherapy, motor training etc etc. Since Dr. Falguni joshi is the dirctor of kalrav and she has many years of experience with autistic kids. She believes that early diagnosishe is more close to the child, he is always present in all the activities performed by the child. Since he has more of practical of autism is the key to improve the condition. There are very few early intervention centers in India and not many people areexperience than theoratical, he has a different take on autism. aware of these centers.Anil bhai feels autism can be cured to a great exent provided the kid receives constant attention and care. He feels small Usually doctors are capable of diagnosing autism only after the child turns 3, early intervention centers have experts who canactivities (like pickining a ball from a group of balls) that the kids performs now can help them in the long run. He constantly diagnose much before the kid turns 3. She claims that at this early age parents find it difficult to accept autism and they tryincreases the difficuly level of activities hence making the activities much more interesting. Below is an example of how Anil alternate treatment or wait for time to heal. She is constantly on the look out for new activities and new products for autism.bhai increases complexity of a simple activity. When asked about incorporating the methods used in other countries for treating autism, She denays by saying " The treatmentsStep 1 - Give the kid two bowls (one empty and one filled with balls) and let him pick balls from one and put in the other methoed and activities followed in others countries just cannot be adopted due to cultural differences".Step 2 - Let him pick ball of specific color and put in the other bowlStep 3 - Asks the kid to bring the bowl back to his office(Step 1 improves the fine motor skills, Step 2 teaches him color or shapes, Step 3 teaches him about the ambience and peoplearound him.)
  26. 26. Vajyanti Ankit Mummy BM Institute Kalrav Trainer MotherOut of the eight who passed out from care giver training institute, Vijayanti is the only one who is passionate about teaching “He was about six months when he had a stroke, since then his condition has worsened” Ankits mother recollects. She took himautistic kids. Her batchmates have found other lucrative jobs and are well settled. to a doctor back then and appropriate medication was suggested by the doctor. The doctor never realized that he was continually having internal strokes, which was never exhibited by his body. He lost all the abilities he had imbibed and gradually entered theWe found considerable difference in Vijayanti and Anil bhais teaching methods. Unlike Anil bhai, Vijayanti uses sounds and world of autism.sense of touch to teach the kids. She always makes rythemic sounds while teaching, also teaching is done by singing. She usesdifferent ways of teaching daily. Same things are taught in different ways daily. It was hard for her to comprehend the fact that her son has autism, she thought there might be some other way. Her husband quickly took a stand and helped her out. She says "If I hadnt accepted the fact that Ankit is autistic then his condition might haveBelow are some of her observations worsened by now, the faster a parent accepts it better it is for the child". She felt much better after meeting doctors, teachers and other parents at rehab center.• Autistic kids have very good imaging skills• She feels teaching by singing is the best method "I was never like this before. I was shy and never travell alone etc. Now I take Ankit to rehab center alone, indulge in his training• Need to find activities that increase their interest rather than trying to pull their attention activities and have accepted the fact" she says with a lot of confidence.• Mothers are always with the kid, hence they need more counceling so as to accept the fact• She feels simple things can teach them more than complicated technology (for eg a wooden toy that makes sounds)
  27. 27. Animal Phycitrist Dr. Loken Kharewal Dr. Asha Kalrav Animal Physiatrist Special educator & PsychologistAfter speaking to Mr. Lochen, we were clear that we can no where find an animal physiatrist and a trainer like him. Mr. Lochen Dr. Asha has many years of experience in teaching children with development delay. She has also worked with BM institute forhas been travelling around the globe to learn animal behaviour and training methods. many years.Inetially we intrested in understandin varous ways employed in training animals. We expected to incorporate some of his She feels Most of the govt institutions are dry and teachers lack passion, which effects the children in many ways. She says "Thesemethods in helping out autistic kids. Soon we got interested in his Dr. Dogs (certified by Hongkong agency) which are the kids are are very receptive, if the person incharge or their parents lack positive energy it naturally effects their progress. The caremost obedient ones, specially trained for medical purposes. He has tried his Dr. Dogs in various ares like blind, paralysed etc. giver has to get involved in all the activities of the children. I love my work, I have passion for my work, that is the reason why IHe was very eager to try it on autistic kids. get positive results”.Below are some of the training methods employed. A teacher has to be spontaneous, nothing has to be predefined, it is the wit of the teacher that these kid like. “A teacher is a host who invites the chirdrent to the class room for intellectual feast”. “It’s a complimentary thing, when a child improves theirReward method - Training by constantly rewarding the animal parents flourish which in turn helps the kid to flourish. When parents reach kalrav they receive a common platform, they get aShaping method - Training by reducing the reward and increasing complexity feeling of kinship. They feel they belong to that clan which automatically boots up their energy.Desensitizing - Generally used to get the fear out of the animal. Animal is constantly exposed to fear and rewarded for it. Children are the mirror of their house; they show up their parents attitude. "If I feel like their parents are not confident, my first step will be to give confidence to the patents and then concentrate on the child”. “I enjoy reading and I have been reading many books related to child psychology, and all the techniques automatically shows up when I teach these kids”. She constantly put words into their minds daily by singing any the kids gradually imbibe it over a period of time.
  28. 28. Color Interaction Puzzle Findings:- • Mildly autistic kids could easily differentiate colors and shapes. • Moderately autistic kids had trouble differentiating one or two colors (like blue and white) • Highly autistic kids knew that the gaps have to be filled, but didnt have any idea of colors. • The game also helped us to understand how something new is taught to autistic kids. Teaching was done by frequently showing the kid how to do it and by making him do it by holding his hand. Next Version:-Observing the kids alone was not enough to understand the condition. To understand the kids better, we had to come up withactivities. Hence we deigned a simple puzzle (shown above) which helpd us in understanding many things. • The puzzle can be improved by incorporating other sensory elements like sound, vibration etc. • More information can be convayed to the kids, for eg if an apple is drawn on the red slab, the kid will slowly learn to associateSix slabs of different colors were given to the kids. The slabs had cleanly cut square holes in the center and the the corresponding apple with red.missing pieces were handed over to the kids. The kids were expected to place matching colors in the missing holes. • Different shapes can be used other than square and different sensory materials can be used for the grip.
  29. 29. Analysis of Research Data After the research phase we put together the missing parts to create an ideal system model. We were clear that the areas to be taken care was awareness, diagnosis and evaluation. What was missing in Research - Analysis autistic kids life was interaction with the outside world. Once the kid enrolls into rehabilitation center, he is completely cut off fromPHASE - IV the outside world. Hence an ideal system would be one in which the autistic kid is not cut off from the outside world and instead he is in the mainstream itself.
  30. 30. Ideal System Model About System Model Our system model explains the journey of autistic individuals. It starts with explaining the scenario at home, how it changes after the child’s birth. How grandparents get more close to the family and how other relatives move far away from them. Next important phase in the kids life is diagnosis of autism. The model explains why autistic individuals are diagnosed much later in their lives. This is explained by highlighting the system employed in schools and kindergarten. The compulsory promoting system till 4th grade discourages parents from accepting autism. The sooner parents accept autism better it is for the child. The parents reach a predicament when the child fails to get promoted to the 5th grade. This is the stage where teachers and principals force the parents to enroll the child into rehabilitation centers. There are also some mildly autistic kids who make up to the 5th grade and remain in mainstream education and there are also some lucky kids who are diagnosed in much earlier stages of their life by early intervention centers. The story doesn’t end here, most of the time kids are misdiagnosed and treated for random diseases. It happens purely due to the lack of awareness among doctors. Once the kid is diagnosed with autism, an IEP (Individual education plan) is prepared and is enrolled into rehabilitation center. From here on the life of autistic kids become very monotonous. His life is filled with physiotherapy, occupational therapy and various activities. Their life revolves around home and rehab center. The only people they meet are their relatives, caregivers and doctors. This loop continues till the end of their life.
  31. 31. System Model
  32. 32. Sub System Possible Interventions After studying the research, we made system and subsystem models. On which we started thinking about the possible intevention at every possible stages.
  33. 33. Ideas and ConceptsPHASE - V After Understanding and analysing the system model, we carefully marked all the opportunity areas. Below are the Ideas and concepts we came up with after the brainstorming session. These Ideas can be categorized as follows: 1) Service Level 2) Policy Level 3) Product Level 4) Web/Internet 5) Others Each one them has been explained in this phase.
  34. 34. 1 1 Care giver training programme for mother Care giver training can be very helpfull for mothers, to understand their kids and also various methods teaching for special kids. Special kinder garten for early diagnosed kids 2 A well planned kinder garten for early diagnosed SERVICE LEVEL autistic kids. Which will have all the facilities like sensory training and speech therapy room etc. Which will also prepare them for mainstream education. IDEAS
  35. 35. 3 24 X 7 Care and councelling centre 5 CAB Service A 24 X 7 coustomer care and councelling centre for all, where Doctors, trainers and caregiver will be available and on call these will provide instant Daily commuting to the rehab center is a big pain help to the needy and if conditions are worse a care to the autistic kid mother or the family. giver will be sent instantaniously to the family on So a CAB service can be planned, which will pick request. the kid from their home to rehab center and drop This service will take care of every small things him to the home and in the meantime while going related to autism or special kids. to the centre, the kid can have few activities or the outside world itself will give him altogether diffrent experience. This can be planned by diverting the existing CAB services or by introducing to the 24 X 7 care centre. Township for Autistic families 4 6 These townships can be made specially for the Training centre for Dr. Dogs families having anyone suffering with Autism. When Autistic kids are around with the similar Since the Autistic kids are found to have a good disorder they find it very comfortable. The same connect with the pets. goes to their families too. Therefore Dogs can be trained as Dr. Dogs, so that Hence a Township can be planned which contains they can become a part of their life and will not all the facilities like Rehab center, physiotherapy harm the kid in any way. area etc available in township premises only.
  36. 36. 7 9 Design for Autistic Needs Art & Craft cources at teaching levels As we know that every Autistic kid is diffrent, therefore a special programme can be implemented at design institutes. Art and Craft activities shuld be recommended in In which every design students need to pick one the teaching curriculam which enables the kids autistic kid from the society and should design to improve the visualization, color and eye-hand products, services etc around that special kid. cordination. which will solve a lot of unique problems faced by these kids and their families. 8 10 Exchange programmes for trainers Activities that can help diagnose kidsAn exchange programmes with the rehab-centresabroad may be planned by the Indian rehab centres. Kinder garten has many activities like puzzles,So that our Indian trainer will get more exposure poetry etc that are fun and helps in learning too,to the research they do and activities they apply to similarly clearly planned activities can be madecure Autism. compulsory, that help in diagnosis of Autism atAs a result teachers/trainers will learn diffrent this level too.methods adapted in various countries.
  37. 37. 2 1 Insurance against Autism An insurance scheme against Autism, where every child born in India will pay one time insurance premium and if found to be Autistic in later age of his life. The insurance company will give them compensation. So by this the family burden reduces and the child will get better diagnosis and treatment. This scheme can be made coumpulsory too. Increased pension plan for grand parents 2 Since grandparents shifts to the cities for taking POLICY LEVEL care of the Autistic grandchildren, a revised pension plan for these grandparents can be considered, which will make them self sufficient. SOLUTIONS
  38. 38. 3 Manadatory cirtification for Autism 5 Employment programme for adult mildly affected Autistic kids A cirtificate of non disability of Autism can be In this scheme, the mildly affected autistic kid or made cumpolsary at shcool level before taking autistic kids with high IQ can be identified and admission to the 1st standard. This way every kid according to their ability the government will will get diagnosed at a very early stage in life. provide them suitable employment. By this they will feel self sufficient and will be a part of the mailstream too. Special cirtification required before addmission to kinder garten 4 Tax benifit for buying home 6 Manadatory diagnosis of Autism before kid is A plicy which help the autistic kid family to buy enrolled to the kinder garten. home with minimum tax expences or tax free.
  39. 39. 7 Relocation Benifit 9 Pocket Money Scheme This will provide an easy relocation to the parents A government shceme to give monthly pocket job in the nearby cities where they can have better money to every registered adult autistic kid. facilities and rehabcentres for their autistic kid. This will also help us to identify the spread of This will also provides the kid will better medical autism in India and will give some financial facilities also. support to the kid and family. Incorporating IEP into the Mainstream Education 8 Special Compensation for Care-giver / Trainers 10 Individual educational plan (IEP) has no relation Care givers or trainers are very important in with the mainstream educational plan, due to this Autistic kids life. A good care giver can change his/ reason the autistic kid never get a chance to read or her life. Most of the trained care giver settle for write. other lucrative jobs. Many of the autistic kids who have ended up in a Hence to encourage them to follow their dream, rehab centre after mainstream education can read special compensation can be provided by the and write. hence it is very possible to teach them government. how to do the same.
  40. 40. 3 1 Eye Coordination Device A device that will help an autistic kid to make eye contact and eye coordination. Portable Sensory Integration Device 2 Autistic kid find sensoty integration room very PRODUCT comfortable and soothing and there are no portable sensory integration devices are there for home. So a device can be made for this need. SOLUTIONS
  41. 41. 3 Autism awareness and diagnosis KIOSK 5 Autistc CAB Design This KIOSK will be installed at various public place A vehical can be designed for the daily commute to spread awarenss amongst the people and will of the kid to the rehab centre, which will have few teach them various autism diagnosis methods, so activities etc organised in the vehicle itself. that parents can also diagnose their kid of autism.Representing Day to day activities graphically (Speech Therapy) 4 Special diagnostic tools 6 A type of speech therapy can be devloped Special diagnostic tools can be designed to graphically which will teach kids the basic diagnose autism as early as possible. Already made activities graphically eg brushing teeth, taking diagnostic tools eg MCHAT or CARS can be also shower etc. put into the device.
  42. 42. 7 Speech Therapy A device or an activity can be made which will enhance the kids ability in speech at rehab centres as well as home.
  43. 43. 4 1 Autism Help Platform A worl wide web platform which will indicate the need from a registered autistic family. So that any one from the world can help that family financially or by kind. This will not having any mediator in between. And for a check to the registred autistic family NGO can run this kind of service. Autism Detected by All 2 A web service where people are free to tag the WEBINTERFACE place where an autistic kid is living. This will give a signal to a dignsis team which will go there and diagnose the kid or provide him treatment free of cost. SOLUTIONS This type of system help in knowing the unknown spread of autism in the mainstream and will provide treatment to the kid and awarness to the society.
  44. 44. 3 Autistic Homes 5 Networking amongst Doctors A forum can be maintained which will establish This will give a platform to the doctors related a connect between all the homes having autistic to the autism cure and they will be connected kids. A common platform through wich each each worldwide. which help them to share knowledge parents or relatives can share their experiences or or solving each other issies comming in curing a ask help from similar people. autistic kid. Since everyne is going under the similar tentions in life, they will be more than happy to help each other. Website for Assesment 4 Rehab Centre Networking 6 A common worlwide platform for the autistic kids An interface which will connect all the rehab assesment data will be fed by the rehab centres or centres worldwide to one place. similar organizations. This will help them share info or activities This data can be accessed by any one amongst the instantly. Which help devlop overall system in a doctors or trainers which will give them an idea rapid way. how a kid improved and from which activeties. which will give them clear ida of training instead of hit and traial for many years.
  45. 45. 5 1 Diagnosis by Dr. Dogs or Activities with them Dr. Dogs can be used as a medium for diagnosis of autism in early stages, as they are been used for detecting hear attacks. Also there can be activities we can decide around the autistic kid with the dr. dogs, which help the kid to devlop his play behaviour. Autism Awareness Programmes 2 In India Awareness about the Autism is still OTHER lacking, Which is moslty needed. So can spread the awareness by supplying newsletters, pamphlets or hordings to make every people aware about it. SOLUTIONS
  46. 46. 3 Individual attention to poor performed kids At school level instead of promoting them to the next level there would be a programme which will identify the poor performed kids and provide them necessory training or classes on the basis of their skill sets. Alternate Teaching Methods 4 Alternate teaching methods for underperforming studnets (from 1 to 5th standard). As Autistic kids are generally found in the under performing students section.
  47. 47. Idea selection crieteriaSELECTING SOLUTION The previous phase was more of a brainstorming phase where all ideas were put down on paper. Some of them are feasible whereas some are not, some have impact on kids whereas some have impact on their parents. It was the ideas that mattered the Parameters symbol and value: most than constraints. How ever magnificent the idea is, if it is not feasible it is not Impact 2 4 6 worth considering. So, in the next phase we were more down to earth and all the ideas were subjected to various constraints. Feasibility 1 2 3 Improvement in Traid The Parameters that we concidered are: Communication 1 1) Impact (Overall Impact on the autistic kid or Play Behaviour 2 the people connected to the kid) Socialization 1 2) Feasibility 3) Improvement in Traid a) Communication b) Play Behaviour So total Evaluation score is out of 22 points c) Socialization All the parameters are denoted with various colors and specific values have been assigned to them.