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AUTISM NETWORK: VOL 1 ISSUE 3 ~ DECEMBER 2006

DECEMBER 2006 VOL 1 ISSUE 3

C O N T E N T S

Action For Autism is a registered, non-profit, national parentorganisation. Autism Network is published by Action For Autismto provide information on education, therapy, care, and to provideinteraction for families and professionals across the country.

Autism Network is a forum for expressing diverse opinions.Action For Autism does not hold itself responsible for opinionsexpressed by individual writers. Publication of any informationdoes not mean support of Action For Autism.

INFORMATIONFor information on receiving the Autism Network write to:Sector 5, Jasola Vihar, Behind Sai Niketan, Opp. Gate 6Sector 8, SFS Flats, New Delhi - 110025.Tel: 40540991/ 2

Autism Network does not accept advertisements.Expenses are met through memberships, donations andsponsorships, from our readers, friends and well wishers.

YOUR CONTRIBUTIONSDo you have any comments, suggestions to offer? Informationand experience to share? We look forward to our readers'participation. Send letters, articles, illustrations to:

The Editor, Autism Network,Sector 5, Jasola Vihar, Behind Sai Niketan,Opp. Gate 6 Sector 8, SFS Flats, New Delhi - 110025E-mail: [email protected]: http://www.autism-india.org

Editor: Merry BaruaEditorial Board: Ann Varavukala, Indu ChaswalDesign & Production: Bindu Badshah, Sudhir Pillai

Page One

Parent as Researcher

Book Review:

Eddie and Me on the Scrap Heap

Letters

Inclusion Works...If Done Right

Autism Conference in Bangladesh

So What Does He Learn at School

Depression and Anxiety Disorders

in People with ASD

AFA Annual Training Workshop (H)

Parent's Perspective (H)

Play & Sensory Integration - Part II (H)

How Much TV is Good TV?

Helpline

Cover Illustration

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If you want to help, write to AFA or call:� AFA : Tel. 40540991/2

� Indu Chaswal: Tel. 65289605� Reeta: Tel. 9811103702

WISHLIST !

'Aeroplane over the Monument'By Aditya Aiyar, age 4 years, student of Scottish High

International School, New Delhi

FOR THE SCHOOLo Swing o Plastic indoor slide

o Board markerso Permanent markers

o Art materials such as :Water colours, Acrylic paints,

Cartridge paper, Canvaso A4 sheets o School Exercise books

o Compact Discso Lady Bird Reading Series

Sensory toys that give off light /make a noise

o Musician to teach musico Artist to teach art

FOR THE WORK SKILLS TRAINING UNITo Twin tub manual washing machine

o Plastic-bag sealing machine

FOR THE TRAINING AREAo Two airconditioners

o A collar mike

N E T W O R K


PAGE ONE

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It is fifteen years since Action for Autism took off; nearlyten years since the first step towards the National Centrefor Autism was taken. It is with a sense of quietaccomplishment that we contemplate the huge distancethat the autism community has traversed in theseeventful years.

Action for Autism (AFA) is more than an organisation: itis a movement. It is a matter of great satisfaction thatthis movement has been the catalyst for everything thatis happening in India today in the area of autism. In theprocess, somewhere along the way, we have also gained aformidable reputation as an organisaiton of impeccableintegrity and quality of work.

Yet AFA started as an informal parent support group,with a focus on creating awareness and supporting eachother. But a growing understanding of Autism, and livingexperiences with individuals with autism, sharpened thedirection of the organisation towards inclusion andempowerment, and a movement for creating an equitablesociety.

The founding philosophy behind AFA was quite contrary tothe commonly held perceptions of disability. AFA did notview autism or disability as a tragic condition, butrather as a different way of being, as �normal� for theperson with autism, as the worldview of a neuro-typicalperson is �normal� for her. This philosophy was in manyways unique given the typical scenario prevalent in society.

As a result the AFA family of parents is enabled to lookbeyond their own children and at the wider community, andits exceptional professionals imbibe the AFA philosophy ofloving and accepting without judgments, and from thatperspective enable individuals with autism to empowerthemselves.

AFA has been fortunate in achieving many important gainsfor the broader autism movement. From focusingattention on the dire need for services, to advocating forthe rights of persons with autism and their families. Butperhaps most importantly, AFA has pioneered thedemystification of professional expertise. AFA has beenable to train parents as confident and competentprofessionals: educating and training their children, beinga support for other families, acting as instruments in thespread of awareness, and advocates in legal issues in thedisability sector.

None of all this would have been possible without adynamic partnership between parents and professionals,of members that extend beyond even the boundaries ofIndia, and the many hundreds of wonderful individualswith autism that it has been our privilege to know. Butthis is just the beginning.

On 8 September 2006 Mrs Sonia Gandhi dedicatedthe National Centre for Autism in New Delhi toindividuals with autism, and all those who love them,share their lives with them, and teach them. On thisauspicious occasion, in the presence of an augustgathering that included the CM of Delhi Mrs Sheila Dixit,the Minister of SJE Mrs Meira Kumar, the CM of HaryanaMr Bhupinder Singh Hooda, and others, individuals with

(...cont on page 4)

T H E I N A U G U R A T I O N


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Shubhangi Vaidya

Parent as Researcher� A personal narrative �

Shubhangi is aPhD Scholar at the Centre for the Study of Social Systems,School of Social Sciences, Jawaharlal Nehru University in New Delhi.

She can be contacted at : [email protected]

I am the mother of an autistic child. I am also a studentof Sociology, presently engaged in PhD research on thetopic �A Sociological Study of Families of AutisticChildren in Delhi� at the Jawaharlal Nehru University,New Delhi. The last two years have seen me negotiatingthese cross-cutting identities; researching into an issue ofwhich I too am the subject matter., building relationshipsand arriving at understanding myself, my family andother families like my own.

RESEARCH in the Social Sciences was traditionallymodelled on the natural science; it had to be �objective�and �value-neutral� to be any good. Over the years, thisrather blinkered understanding has changed; it is nowacknowledged by most social scientists that valuesimbue every aspect of our work, right from topicselection to interpretation of our data. Moreover, our�subjects� are not things, they are flesh and blood humanbeings with desires, motives, ways of thinking, actingand feeling that are at once unique and universal. As aparent of an autistic child wanting to study other familiesof autistic children, I came into research with my ownbaggage of assumptions, beliefs and judgments which Ihad to systematically unlearn, as I got into the thick ofmy work. This article attempts to chronicle some of theissues and dilemmas dealt with during the course of myfieldwork with families.

LET me begin on a personal note. My younger son,Vishu, was diagnosed with autism at the age of three. Hehas since then been attending Action for Autism�s OpenDoor School. At 9 ½ , he is a bright, cheerful, veryverbal little boy, fluent in both Hindi and English. WhenVishu was six, and his elder brother eight, my husbanddied. This traumatic event led to a completereorganization and reconstructing of our lives; most ofthe difficult decisions I had to take at the time wereanchored around Vishu�s disability and how to protect

him from the pain and confusion of the situation. Iexperienced a tremendous sense of �liminality�, a senseof being completely out-of-sync with the world aroundme; a feeling that my reality and that of the rest of theworld don�t quite fit. I also understood how thisliminality is so much part and parcel of the lives offamilies with disabled people who have to constantlynegotiate a reality that others never quite understand.

I decided to do research that focused on the lived, day-toexperiences of families of children with autism; howthey �made sense� of their child, how they �presented�him to the world; how cultural understandings of mentaldisability and social support (or lack of it) causedfamilies to �remake� their world so that they could go onwith the business of living. Clearly, the work had to be a�qualitative� study, namely, that uses a small sample butis rich in detail, and works at several levels, the inter-psychic, interpersonal and social. I wanted to get into thelives and participate in the experiences of myrespondents and paint as vivid a picture as I could of theday-to-day experiences, joys, sorrows and irritations ofparenting and living with an autistic child.

I did not expect to have difficulty in recruiting familiesfor my study, and I was proved right. Most of thefamilies I approached willingly gave their consent I wasgreeted as a friend, a �co-sufferer�, rather than a nosy,pesky research student who was probing their wounds toearn a degree. Most of my families said they were happythat one of their �own� was articulating their voice. Ioften got to hear the phrase..."you are a mother too, soyou understand..� Although my location as a parentmade for easy access, it created ethical and academicdilemmas. The people talking to me so freely, franklyand trustingly were friends. Their stories of loss, pain,fear and hope were not mere �data�, and I could not treatthem as such. Each �fact� had an emotion underpinning


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it, each emotion was something I too had gone through.Could the stories of these lives, so close to mine bereduced to the dull drabness of a PhD thesis? Couldthese stories be recounted dispassionately? Wouldn�t�sanitising� them for academic purposes be doing a graveinjustice to the rawness of their pain? Then there was theissue of anonymity, of course. I have changed all namesand details that could reveal identity. I also had toexercise tact and caution at what information I includeand exclude. A father of an autistic child confessed tome that he had many extra-marital affairs to help himescape the reality of his child�s disability. Do I includethis information? Will his wife recognize his identity?Will it break up their home?

MOST research relationships are hierarchical; there isthe all-knowing researcher �up there� and the �subject�s/he is trying to study on the other side. Fortunately, thiswas conspicuously absent during my fieldwork. In thetradition of feministsinterviewing, these weredialogues between equals.Often times, I would be theinterviewee rather than theinterviewer as respondentssought details about my lifeand my experiences as aparent. Most of the interviewswere conducted in the homes of my respondents, in asnatural a setting as possible, with the cooker whistling inthe kitchen, kids demanding more Maggie, telephoneringing.

ALTHOUGH I did carry a notebook to jot down points,I purposely avoided that life-line of the interviewer, thetape recorder. This was a conscious and very difficultdecision. Unlike the West, we Indians are not yet a �taperecorder culture�; we are not comfortable revealingintimate details of our life in a machine. After themeeting, I would tear off home and furiously scribbledown notes of every word, every gesture, every action Icould bring to mind. My Research Supervisor will testifyabout those bulky notes in scrawling longhand! Mychildren sometimes accompanied me, particularly if themeetings were on a holiday. The sessions then becamefamily get togethers, excellent opportunities forobserving interactions between siblings and autisticchildren themselves. My son Vishu would look forwardto visiting a child�s home, and would say an enthusiastichello to everyone. After that, both children would driftoff to separate corners, never once looking at each other

until it was time to say good-bye. Later Vishu would say�X� se milkar bahut mazaa aaya!�

MY one-to-one meetings with mothers proved excellent.We would gossip, cook, eat, look after the children,watch TV together, opportunities for female bonding.I realized how little opportunity some of them had toshare their feelings, take interest in them and their lives.Bound as they were to the daily grind of householdchores and the demands of their child, some of thesewomen had retreated into an inner world of silence andsuffering. However, some of them had actively brokenthe shackles of domesticity and dependency and emergedas fierce guardians of the rights of their child; in theprocess, acquiring an identity and sense of purpose fortheir own lives.

BARRING the odd exception, the interviews with fatherswere more formal encounters. As a woman, and a single

one at that, there werecertain �LakshmanRekhas� in place. And yetI was heartened at howfrankly most of themspoke. I realised thatwhereas women tend tobond with each other andparticipate in each other�s

joys and pain, men hardly get the chance or the socialsanction to talk about their deepest feelings. They aresupposed to maintain a facade of control whichundoubtedly puts great pressure on them. I alsointerviewed some couples together. This was verychallenging because I also had to decode the �couplework� that was going on; read their silences, theirgestures, see through the �fronts� that each erected for theother. Interviews with grandparents too were challenging,as one had to encounter their views on modernity,parenting, women�s work and their impact on childdevelopment. This would bring back uncomfortablememories of how my child�s condition was attributed tomy bad parenting and the fact that I was a career woman!

INTERVIEWS with siblings of autistic children werevery interesting too. The way these children made senseof their siblings difficulties would put many adults toshame.

I will never forget the unstinting hospitality I was offeredby every single family; the generous giving of time,(often, scarce and precious family time) encouragement,

�If a man does not keep pace with his companions,perhaps it is because he hears a different drummer.

Let him step to the music which he hears, however measured or far away.�

Henry David Thoreau, 1817-1862 ~


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food and endless cups of tea. Some of them told me Iwas the first person who had taken so much interest intheir lives and that they had come to consider me like afamily member.

WHEN my research proposal was first put up forconsideration at my University two years ago, one of theprofessors asked me how I was going to keep myselffrom getting emotionally involved. I had anticipated thequestion and had a glib rejoinder ready. I said, ratherpompously, that I hoped my training would enable me towalk the fine dividing line between research and autism.Fine words, but so hard to put in practice! I foundmyself getting angry, upset, helpless, pitying, revolted inturn; I became judgmental of people�s attitudes andbehaviour; I had the strong impulse to tell some peoplethat they were doing it all wrong and give unsolicitedadvice.

I also experienced �survivor guilt� because of the factthat my own autistic child was so high functioning and Ihad a regular one as well. I felt immense humility in myencounters with the families of severely impairedchildren who did not have much by way of educationand access to facilities, but displayed unconditionalacceptance and immense love for the child. Often times Ifelt so bogged down by the force of my own feelingsthat I wondered what had ever possessed me to take up

this project. How could I produce a piece of research whenmy own feelings and emotions were so intense, soconflicting?

THESE are not easy admissions for a researcher to make. I realised, however, that my own feelings and emotionswere also data. I recorded them as honestly as I could inthe section of my field notes that I called �Headnotes�. Irealise they provide a prism through which to understandthe way in which society at large responds to disability.

IT would be premature to discuss my findings, as muchthought and reflection are as yet required on the narrativesI have collected. Having said that, the overridingimpression that I have gathered is the sheer resilience andresourcefulness of the human spirit when faced withadverse circumstances.

ON the flip side, of course is the reality of modern, urbanliving, the rapid disintegration of traditional socialnetworks and the absence of new ones to replace them.The rejection, the relegation of �non-person� status to aperson who�s mind works differently from the rest. And,of course, the children themselves. The real heroes, whotry bravely to accommodate to a world that is so difficultto understand. Whose �voices� we do not have the insightto hear, yet who probably apprehend, better than most ofus, the madness of the human condition.

autism played important roles in organizing the event,welcoming guests, participating in the lighting of thelamp, offering an invocation to the almighty, and givingthe vote of thanks to everyone forjoining us on that special day.

The National Centre for Autism is adream that has been in the making formany years. This centre will bringtogether persons with autismspectrum disorders, parents,professionals and researchers. It willcarry forward its work on rights-basedissues. The National Centre has muchto do in ensuring education,employment, and life itself, in inclusiveenvironments.

AFA has set up an infrastructure forthe timely diagnosis of children at risk,runs a model school for theirintervention, and trains parents and

professionals. Our next step is to build on their future:making available an infrastructure to strengthen ouryoung peoples existing work skills by setting up model

training units, and build residential careunits, and thereby direct/guideyoungsters towards independent living.

The National Centre will expand andextend the many activities alreadyunderway, and will allow a level ofintegration and coordination thatotherwise would not be possible.

The inauguration of the NationalCentre marks a milestone in therelatively short but remarkably vibranthistory of the autism movement inIndia. We know that we still have veryfar to travel indeed. The road ahead islong and difficult, but each of usknows, with certainty, that WE WILLDO IT!

(...cont from page one)


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Mark Littman was inspired towrite �Eddie and Me on the ScrapHeap� by his experiences with hisown son, who has autism. Littman�sfirst-hand experience of autismenables the reader to gain a uniqueinsight into the world of Eddie, themain character in the novel. Eddie is anine-year old boy, who has Asperger�ssyndrome. His story is told via the

narrative of his uncle, Natie, and by descriptions ofEddie�s interactions with an eclectic mix of characters.

Eddie affects all of the characters in the book in someway. When we first meet Eddie it is through his UncleNatie, who has come to Eddie�s home in Los Angeles toact as his nanny, after an unsuccessful stint in New York.Natie wants to be a reggae star, wears his hair indreadlocks and speaks with a Jamaican accent, althoughhe has never actually been to Jamaica! Natie�s goal is tostart a reggae band, which Eddie becomes involved indue to his remarkable musical ability. Throughout thenovel Natie becomes more than a nanny to Eddie; he ishis friend and mentor. The relationship between Eddieand his uncle is a special one that impacts on both ofthem in ways that they did not expect.

Eddie�s mother, nicknamed the �Ice Queen�, is quitenegative about Eddie, often in front of him. Through thedescriptions in the novel the reader is able to reallyunderstand what Eddie�s mother feels. We are told abouther struggle to accept Eddie the way he is, and herexperiences with a range of professionals who all claimthey can �fix� Eddie in some way. It is these parts of thebook that I found particularly well written and relevant tothe real life experiences of many families who havechildren with disabilities. By the end of the novel the�Ice Queen�s views and opinions have changed quitedramatically, and witnessing her transformation was, forme, one of the highlights of the book.

Other characters in the book include Sharon an �EarthMother� who introduces Eddie to holistic healing, Jake

the �pirate� who owns a scrap heap, and Eddie�s extendedfamily, who have little understanding of what it is like to�be� Eddie. A harrowing event affects all of thesecharacters in ways that none of them could have predictedand changes the overall tone of the novel. Ultimately thischange in the book allows some conclusions to be madeand some major changes in the lives of all the characterstake place.

Throughout the book the reader is given descriptions ofhow Asperger�s affects Eddie�s life and those aroundhim, in both positive and negative ways. The authorsuccessfully explains Asperger�s syndrome, butsometimes falls into the trap of describing Eddie by his�special skills�, rather than as Eddie the whole person.Despite this I found the book enjoyable in general theauthor�s descriptions of Asperger�s syndrome and the wayit impacts on Eddie�s life were realistic and sensitive.

BOOK REVIEW: LAURA BAXTER

Eddie and Me on the Scrap HeapBy Mark Littman

Published by BookSurge, LLC

MY daughter was diagnosed autistic by Dr VibhaKrishnamurthy in the year 2000. Since then I am intouch with Action for Autism. For more than six yearsI have been receiving Autism Network. The information weget helps us a lot. It also helps parents like us both inIndia and abroad to bring up their autistic children in aproper manner.

Each and every copy shows a new light to us - such aswhat was written in the last copy in �Page One' where youpointed out:�If parents of high functioning autistic child do not wantto send their child in the company of more severelyaffected ones, then how do we expect parents of normalchildren to allow their kids to interact with highfunctioning autistic children?�Such articles are really wonderful. You and your teammates really deserve appreciation.

N. SahaMUMBAI

Letters


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TWO and a half years ago an inclusive classroom wasstarted at Holy Cross Convent Bastora, Goa. The startingline-up included 8 parents who decided to fly in the faceof convention by admitting their children to thisclassroom and a group of dedicated teachers trulycommitted to the belief that it was time for children withall abilities to be educated together.

THE concept of inclusion was new to everyoneincluding the principal of the school, Sr. Pushpika, whonevertheless courageously volunteered the space of aclassroom in her school. The concept of inclusion issimple � educate children with and without disabilitiestogether for the maximum benefit of both. The keyphrase here is �maximum benefit of both� which meansthat inclusion is not an excuse to just �dump� childrenwith disabilities into a regular setting and hope that theylearn skills. Rather it is a carefully planned programwhere students with special needs learn various skills,which are functional, while giving them an opportunityto interact with their own peers.

LET us take the case examples of Holy Cross Conventand Chubby Cheeks School, Goa. Both have separateclassrooms (Resource Rooms) for students with a varietyof disabilities (autism, mental retardation learningdisabilities). The curriculum of the classroom is asfunctional as possible and is divided into 6 main areas:

1. Communication: Since the majority of children inthese classrooms are autistic, there is a great focus onteaching communication skills. These skills range fromteaching the child to request simple needs and followingsimple instructions to asking for information orconducting a conversation. After the child attains theskills in the classroom setting, the emphasis is on usingthem in real life situations.

2. Reading: Functional reading is yet another skill thatis addressed in the resource room. In teaching reading

the aim is to get the child to read as quickly as possibleusing a structured sight word program. Once the childhas a reading vocabulary of 10 words, he/she is movedon to reading easy books. In order to help in the processof inclusion, the child is taught to read from the regularreaders of the school. Thus a few children do attend theregular class during the reading period.

3. Maths: As with all other skills, the focus here ismainly functional. Activities in functional math rangefrom basic matching and sorting, number identification,sequencing to reading the time and using a calculator formoney exchanges.

4. Writing: Writing is also taught using a verystructured program, viz Handwriting Without Tears.Writing is taught in sequence and the focus is on goodletter formation and a neat script. The practical aspectsinclude filling out a form with personal information orbeing able to sign their name.

5. Gross Motor: In this period children are taughtYoga, running a race, ball throwing and a few gameslike bowling and musical chairs. Since a lot of childrenhave problems with body orientation and musclerelaxation Yoga is stressed on as part of the curriculum.

There is a special emphasis on racing and ball throwingbecause they are the two sporting events in the SpecialOlympics in which our students participate every year.

6. Fine Motor: This area includes all skills to do withleisure and recreation involving fine motor movementseg cutting, coloring, clay work, painting and sticking, toname a few. The reason for teaching these skills is givethe children a chance to meaningfully occupy themselvesin their spare time. Once these skills are learned to thelevel of independence, students have a better chance ofintegrating in the non-academic classes in the regularschool.

Inclusion Works...If Done RightBy Giselle Lobo

Giselle Lobo is a special educator who has trained in the USA. She has returned to Goa and set uptwo resource rooms in regular schools: at Holy Cross Convent � Bastora, and Chubby Cheeks School� Pilerne, where children with disabilities (mainly autism) are educated together with regular students.

She is also the chairperson of Jyot Society of Parents with Autistic Children, Goa.


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In addition to these classroom skills, once a month, thesechildren are taken on a community trip whichcontributes to their developing appropriate social skillsin the community. Some of the places visited haveincluded the Goa Dairy, a movie theatre, the ice-creamfactory, the local shop and the supermarket. At all theseplaces children were encouraged to use skills learned inthe classroom. Eg those children, who were learning touse money, were allowed to independently go around thesupermarket to choose what they wanted and go to thecounter and pay for it. Those who could speak wereencouraged to go up to the person in charge and ask forhelp. Future trips will include a visit to a restaurant,beach and an overnight stay at a hotel.

While the students are attaining skills in the resourceroom, they are also being groomed to participate in theregular classroom. Eg the fine motor period, takes careof teaching them art and craft skills which helps themwhen they go down for those periods. Other students aretaught reading so that they go for the reading period.Those students who have developed a level ofconcentration participate in assembly.

It must be stressed that the main objective of inclusionhere is social rather than academic. When students fromthe resource room and regular classroom interact witheach other, there is growth for both groups. The specialneeds students learn appropriate behavior while theregular students learn that to be different is notnecessarily bad. Both accept each other in a completelynatural environment.

Many students in the resource room still do not have thenecessary skills to be part of the regular classroom andso in this case students from the regular students arebrought into the special class and involved in games,acting or story telling activities. Thus the special needsstudents get a chance to interact with regular studentsbut in a more protected environment.

In another effort towards pushing greater awareness ofdisabilities, groups of older students are invited to cometo the resource room and interact with the specialstudents. They also receive small lectures on what isautism and mental retardation and what their attitudestowards special students should be. These talks haveproved to be very helpful since many students havereported a change in their ideas. As one Standard IXgirl said:�I will never call them handicapped again�.

As of now, both groups of students have participatedtogether in all of the school annual day, teachers day andmothers day programs. During these times both groupsof students have learned how to get along with eachother but more importantly how to enjoy each other.While this program of inclusion is moving forwardslowly but surely, there is still much to be done. Thebiggest challenge is from regular school teachers andprincipals who believe that inclusion would bedetrimental to both groups of students.

But world over, the evidence is clear - Inclusion works�if done right.

�SOCIETY for the Welfare of Autistic Children�(SWAC) is glad to announce that a two-day regionalconference on autism would be held in Dhaka,Bangladesh. We are welcoming speakers and participantsfrom India, Pakistan, Nepal, Bhutan and Srilanka.

Accommodation for the speakers and participation in theconference would be free of charge. Interested speakersare requested to send their names and topics so that wecan finalize and send the agenda and programme detailsto all.

Contact:Anwar Hossain, Chairman, SWAC

Email: [email protected]

Two Day Regional Conference on Autism24 & 25 February 2007, Dhaka, Bangladesh

MARGARET Lobo, a qualified music therapist fromLondon, will give a presentation on Music Therapy andher work with the Otakar Kraus Music Trust in England.Music Therapy seeks to harness the power of music toenable people who find it hard to communicate throughtraditional channels, to express and fulfill themselves.For the last two years Margaret and her husband Walterhave set up the 'Music Therapy Trust' a registeredcharity in India, and are pursuing the establishing of aPostgraduate Diploma in Music Therapy trainingprogramme to begin in Mumbai and Delhi. Thepresentation will be of particular relevance to musiciansinterested in exploring the healing powers of music aswell as those who work with individuals withpsychological, developmental, behavioral, learning orphysical difficulties.

MUSIC THERAPYIndia Habitat Centre, 1 December 2006, 6:45 pm


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Director, Autism Society West Bengal

So What Does He Learn at School?

Indrani Basu

Few months ago my eleven-year-old son Kausatv had tohave five teeth extracted under general anesthesia. Of thefive teeth, four were milk teeth and one permanent. Itmeant a one-night stay in hospital. The evening weadmitted him a nurse came to give him the usual checkup. The doctors looking after my son knew about hisautism but the rest of the staff only knew he is a specialneeds child but how special they didn�t know.

THE nurse seeing a young boy proceeded to be friendlyand mildly teasing:�So you�ve been eating too many chocolates have you?�the nurse said.

HEARING the word �chocolate� Kaustav looked at meand I could see the question in his eyes. Was he going toget some and I quickly told him that there were nochocolates here.

SO Kaustav reminded him self by repeating �Eating toomany chocolates will give�� and waited for me tofinish the sentence. So I said ��will give�� and headded, �toothache�.

FROM this little exchange the nurse figured out thatsomething was different here. So I told her he hasautism. The nurse asked, �So what is his problem?� Istarted to explain while she told Kaustav that he had tochange his clothes. Kaustav stood up and started to takeoff his tee shirt.

SHE looked at me and asked �What school does he goto?�. I explained that he goes to a special school.

�And what class is he in?� She asked while she held outthe pajama top that he had to wear. I explained there areno �classes�, and that the children get a communication-based education specific to their needs. In the meantimeKaustav had slipped his arms into the sleeves while shebuttoned him up.

SHE then handed him the pyjama bottoms and told him,�Go to the bathroom and take your shorts off and put

these pajamas on�. Before he left I reminded Kaustav�After you have taken off the shorts bring them backhere.� So Kaustav trotted off to the bathroom.

�Yes but if there are no classes what do they learn? Dothey have exams?� She asked. I wondered how toexplain to her what we teach and how we teach it.

I was mumbling my way through the explanation whenKaustav walked back with the shorts in his hand.�Good Kaustav� I said �you remembered the shorts.�

THE nurse told Kaustav to lie on the bed, which he didand then said, �Put your arm out,� which he also did.She then went on to take his blood pressure.

�So no classes,� she said. �No�.� I went on to mumblesome more about what happens when teaching a personwith autism.

SHE then told him to open his mouth and popped in athermometer to take his temperature. And then started toexamine him with a stethoscope and gave all thoseinstruction that go with it, �sit up,� � breathe deeply, �and Kaustav followed them all.

�Yes, but what do they learn?� She said finally packingup all her stuff. �I don�t see what the problem is heunderstood everything I told him� .

�That�s precisely what he is learning at his school� Isaid, �He is learning to understand.�

JUST to conclude, there are two points to keep in mind:

1. The whole visit went off very well. He went to theoperation theatre alone and reports from the doctors werethat he coped better then most of their other patients.

2. Kaustav did not understand everything. Heunderstood all the direct instructions given. But he didnot understand the very first thing she had said, �Soeating too many chocolates have you.�


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Depression in youngsters with Autism SpectrumDisorders is increasingly acknowledged to be ofsignificant concern in India. Dr Ghazuiddin will take theaudience through the signifying characteristics of autisticdiagnosis and the association of other medical disorders,the mechanism underlying these associations, anoverview of common psychiatric disorders that occur inpersons with autism, asperger syndrome or PDD and thetreatment strategies.

MOHAMMAD Ghaziuddin, MD is Clinical Professorof Psychiatry, Director, Child and Adolescent ResidencyProgram, and Director ADHD Clinic, Michigan StateUniversity, with a special interest in children and adultswith autism and related disorders. Author of severalscientific articles on various aspects of autism,Dr Ghaziuddin has lectured widely both in the US andabroad and in addition is on the editorial boards ofseveral leading scientific journals.

THE lecture will be of interest to medical professionalsand researchers, other practitioners and interested parents.

FOR registration please email the following informationto: [email protected]:

Yes, I would like to attend the lecture by MohammadGhaziuddin, MD

Name.....................................................................................

Address...........................................................................

......................................................................................

Tel ....................................Email ..................................

Medical / Education Professional / Other (specify)

��.................................................

Depression and Anxiety Disorders in People with ASDA N N O U N C E M E N T

India Habitat Centre, New Delhi, 5January, 2007

A lecture by Dr Mohammad Ghaziuddin

Note: The lecture is expected to be at 6:45 pm on5 January 2007 at the India Habitat Centre. The time isyet to be confirmed. Please call Glenys on 40540992closer to the date for confirmation, or check our website:www.autism-india.org

ACTION For Autism takes great pleasure in sharinginformation with parents, special educators, and othercarers of individuals with autism. We have beengenerous about mailing our periodical AutismNetwork out to even those who are not members ofAction For Autism. However, this comes at a financialcost.

We regretfully announce that starting with the issue ofApril 2007, we will be able to mail Autism Networkout only to our members. We know that many of ourreaders value the information they receive in theperiodical. We therefore request all of you to supportus in continuing to send you the periodical by taking amembership of Action For Autism. We encourageparents to preferably take a Life Membership andothers to take a Full Membership of the organisation.

On Receiving Autism Network However, individuals may also take an AssociateMembership in order to receive Autism Network.With your membership you not only help defray thecosts of sharing information, you also contributetowards the empowerment of the autism community.

For those seeking more information, please refer toSubscription on page 20 (back page).

EMINENT Kathak exponent Mrs Shovana NarayanTraxl will give a performance in support of theNational Centre for Autism at the beautiful environs ofthe Lotus Temple in New Delhi on 20 January 2007.

By invitation only.For information please contact: Glenys on 40540992

Shovana Narayan Dances for AFA

N O T I C E B O A R D


10

bl dk;Z�kkyk ds vuqHko dks ck¡Vus ls igys eSa vius muvuqHkoksa dks ck¡Vuk pkgrh gw¡] tks eSaus bl dk;Z�kkyk ls igysvuqHko fd;s FksA

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Xokfy;j esa vk;ksftr esjh c#vk th dh dk;Z�kkyk esa'kkfey gksdj eSau cgqr lh tkudkjh izkIr dh] rHkh eSauslkspk fd *vkfVZTEu* ls xzflr cPpksa ds fy;s eSa vkfVTe lslacaf/kr ikB~;Øe t:j d:¡xhA ;g igyh ckj Fkk fd eSa*vkfVT~e* dks le> ik jgh FkhA vc eSa bl {ks= esa gw¡ vkSjeq>s dbZ tkudkfj;k¡ o vuqHko izkIr gks jgs gSa] tks vc rdugha gq, FksA

Þ,sD�ku QkWj vkfVT~eß us okf"kZd izf�k{k.k dk;Z�kkyk dkvk;kstu fd;k tks fd vfHkHkkodksa vkSj fo�ks"k f�k{kdksa dsfy;s FkkA bldk lapkyu Jherh esjh c#vk th us fd;kFkkA ,0,Q0,0 laLFkk ds }kjk gj lky bl izf�k{k.kdk;Z�kkyk dk vk;kstu fd;k tkrk gSA ;g dk;Z�kkyk ubZfnYyh esa Hkkjrh; iquZokl ifj"kn dh lgk;rk ls ik¡p fnuksard pyk;h tkrh gSA

bl dk;Z�kkyk esa mifLFkr gksus ds fy;s fofHkUu LFkkuksa lsizf�k{kd tks ekufld fodyk¡xrk ds {ks= esa dk;Zjr gS] vkSjvfHkHkkodx.k ftuds cPps ÞvkWfVT~e LisDVªeß ls xzflr gSa]

,sD�ku Qkj vkfVTe okf"kZd iz�kh{k.k dk;Z�kkykjtuh xU/kk] izf�k{k

mifLFkr gksdj Kku izkIr djrs gSa] bl dk;Z�kkyk dkvk;kstu djus dk eq[; mís�; vfVTe ls xzflr cPpksa lslEcfU/kr dfBukb;ksa dks tkuuk o mudk lek/kku dSlsfd;k tk,] mlds ckjs esa crkuk FkkA bl dk;Z�kkyk esaO;ogkj ifjorZu] Hkk"kk o laizs{k.k esa dfBukb;k¡] laosfnddfBukb;k¡] lh[kus dh i)fr vkfn dh tkudkjh nh x;hAcPps dks dk;Z djrs le; fdl izdkj ls okrkoj.k o <k¡pkdks rS;kj djsa ftls cPpk vf/kd lh[k ldsA

;g dk;Z�kkyk esjs fy;s cgqr gh mi;ksxh o egRoiw.kZ jghAbl dk;Z�kkyk esa 'kkfey gksdj eq>s cgqr gh vf/kd ykHkgqvk gS vkSj eSa vkfVT~e dks vPNh rjg ls tku o le>ik;h gw¡A tc eSa vkfVT~e ls xzflr cPpksa ds lkFk dked#¡xh rks mu lHkh ckrksa dk /;ku j[kwaxh tks eq>s dk;Z�kkykls tkudkjh izkIr gqbZ gSA

bl dk;Z�kkyk esa lHkh us vius&vius fopkjksa o vuqHkoksa dkvknku&iznku fd;k tks eq>s vfVTe ls xzflr cPpksa ds lkFkdke djrs le; lgk;rk iznku djsaxsA bl dk;Z�kkyk ls esjsvUnj ,d vkRefo�okl cuk gS fd eSa vius cPpksa dks vPNhrjg ls le> ldrh gw¡ vkSj muds fodkl ls lEcfU/krdk;ZØe dks cuk ldrh gw¡A

ns[kk tk, rks ;g dk;Z�kkyk lHkh ds fy;s mi;ksxh oegRoiw.kZ jgh gS Hkfo"; esa blh rjg dh dk;Z�kkykle;≤ ij gksrh jguh pkfg;s] ftlls yksxksa dks ubZtkudkjh fey lds] vkSj T;knk ls T;knk yksx vkfVT~e dkstku o le> ldsaaA

vUr esa eSa esjh c#vk th dks /kU;okn djrh gw¡ fd] ftUgksuseq>s bl dk;Z�kkyk esa mifLFkr gksus dk volj fn;k vkSjvkfVT~e o mlls lfEcfU/kr dfBukb;ksa dk lek/kku cgqr ghLi"Vrk ls fd;kA


11

oks bÙkQkd gh Fkk fd ge ¼ eSa] esjs ifr vkSj csVh½ ftl Vªsu esapaMhx< ls y[kuÅ ds fy, jokuk gq, mlh Vªsu esa sgekjh lkeusokyh cFkZ ij pkbYM u;wjks ltZu Jh uhys�k prqosZnh viusifjokj ds lkFk lQj dj jgs Fks] mUgksus gh gesa igyh ckj ;gcrk;k fd gekjh csVh eqLdku ds lkFk D;k fnDdrk gSA ckn esay[kuÅ ds th ,e lh esa VsLV djkus ds ckr irk pyk fd mls*vkfVtte* gS A eSa cgqr ijs�kku gks xbZ Fkh vpkud yxk fdnqfu;k esa vc tkxs thus ds fy, dksbZ jkg ugha jghA rc gesapaMhx< esa ,d ekufld jksx fo�ks"kK ls *,,Q,* & ,sD�kuQkj vkfVTe & ds ckjs esa irk pykA esjs ifr us ogka lseksckby Qksu ij esjh c#vk ls ckr dh rks irk pyk fd lkyesa ,d ckj gksus okyh okf"kZd odZ�kki dy ls gh gksus okyh gSA

geus Qksu ls gh jftLVªs�ku ekaxk vkSj Vªsu ls rRdky mlh jkrfnYyh igqap x,A

odZ�kki esa eSaus gh Hkkx fy;kA igyh ckj eSaus tkuk dh esjhcsVh dks D;k gqvk gSA ml odZ�kki dks vVSaM djds lcls igyhjkgr rks eq>s gh feyh D;ksafd eq>s ekufld lqdwu gqvk fd eSaviuh csVh ds bykt ds fy, lgh fn�kk esa dne c<+k jgh gwaA

igyh odZ�kki vkSj ckn esa enj&pkbYM izksxzke ls eSaus dkQhdqN lh[kk vkSj bl lky 23 ls 27 flrEcj rd pyh odZ�kkiesa eq>s ;g lh[kus dks feyk fd dSls flyflysokj eSa viuh csVhdh ns[kjs[k dj ldrh gwa vkSj mls vkxs fdl rjg ls Vªsfuaxnsuh gS fd oks vius dk;Z [kqn dj ldsA

bl odZ�kki esa eq>s esjh c#vk dh ;g ckr lcls T;knk vPNhyxh fd ,sls cPpksa ds vfHkHkkodksa dks vius cPpksa dks ljdkjdh rjQ ls feyus okyh NwVksa vkSj lgwfy;rksa ds fy, la?k"kZ'kq: dj nsuk pkfg,A vxj ,slk gks ikrk gS rks gekjs cPpksa dkHkfo"; lqjf{kr gks ik,axkA

bl odZ�kki esa izksQs�kuy] FksjsfiLV vkSj Vhpjksa us Hkkx fy;kAblls yksxksa dks vius cPpksa dh leL;kvksa ds ckjs lgh tkudkjhfey ldhA blds vykok odZ�kki esa vk, gq, yksxksa us ,dnwljs ls vius vuqHkoksa dks ckaVdj Hkh dkQh tkudkjh ,d=dhA

odZ�kki esa vk, gq, dkQh vfHkHkkodksa dks yxrk Fkk fd tcgekjk cPpk cksy ldrk gS rks mls lEidZ fof/k D;ksa fl[kkbZtk, ysfdu odZ�kki ds nkSjku gh vfHkHkkodksa dks irk pyk fd,-,-lh- fof/k ls gh oks vkxs pydj cPpksa dks nSfud thou esagksus okyh t#jrksa ds fy, cksyuk fl[kk ik,axsA odZ�kki esaiz�u&mÙkj l= dkQh vPNk Fkk vkSj vfHkHkkodksa dks ;g lclsT;knk ilan vk;k D;ksafd blesa mUgsa viuh leL;kvksa dslek/kku dk irk pykA

odZ�kki ds nkSjku eSaus ns[kk fd 'kq#vkr esa yksx ;g ekuus dsfy, gh rS;kj ugha gks jgs Fks fd muds cPps dks vkfVTte gSAmlds lkFk ,d cPps tSlk gh O;ogkj djuk gS] mlds lkFk[ksyuk gS mls le>uk gSA odZ�kki esa fofHkUu rduhdh eSFksMfl[kk, x, fd cPps dks fdlh ckr ds fy, u ugha djuk gScfYd mlls ldkjkRed ckr djuh gSA cPps ds cnyrs gq,O;ogkj dks fdl izdkj ls Mhy djuk gS] mls lgh rjhds ls[ksyuk fl[kkuk gSA ;g ,slh ckrsa Fkh ftuls vfHkHkkodksa dkscgqr dqN lh[kus dks feykA

odZ�kki esa mnkgj.k nsdj le>kus dh fof/k ls yksxksa dks ckrsacM+h vklkuh ls le> esa vkbZ vkSj mnkgj.kksa ds dkj.k dHkh&dHkhekgkSy gYdk Hkh gks x;kA

var esa eSa ;gh dgwaxh fd tc rd ge ;g ugha ekusaxs fd esjscPps gh esjh igpku gS rc rd ge mUgsa lgh rjhds ls u le>ik,axs vkSj u gh muds fy, dqN dj ik,axsA

vfHkHkkodks ds ykHkdkjh gSokfZ"kZd odZ�kki

izhrh fuxe


12

;g le>uk t:jh gS fd ifjokj esa vlekU; cPps ds gksusij Hkh og lcls igys ,d ifjokj dk cPpk gS vkSj vU;nwljs ifjokjksa dh rjg bl ifjokj ds Hkh dqN mÙkjnkf;RogS D;ksafd ,sls ifjokj esa Lis�ky cPpk gS] rks dqNftEesnkfj;ka c<+ tkrh gSA ;fn ifjokj ds lnL; cPps dslkFk [ksy vkSj euksjatu ls iw.kZ ,sDVhfofjt esa Hkkx ysrs gSa]rks muij tks ruko jgrs gS og de gks tkrs gS vkSj fLFkfrdklkeuk djuk ljy gks tkrk gS lkFk cPpk vU; xq.kksa dksfodflr djrk gS tSls tkukRed xq.k ftuesa lkekftdO;ogkj esa lq/kkj gksrk gSA

fuEufyf[kr dqN ,fDVfofVt+ gS tks dqN [ksy vkSjeuksjatu iznku djus okyh gS%&

- ,d fodkl�khy cPps ds fy, ;g cgqr t:jh gS fdmlds lkFk ?kqeus&fQjus okyh fØ;k,a dh tk,A vkSj mldsfy, dqN le; ,slh fØ;kvksa ds fy, fu/kkZfjr fd;k tk,ftlesa >qyk&>qyuk] LykbZM ij tkuk] ?kksM+k cudj f[kykukvkSj xksy&2 ?kqeuk gsA

- dqN ,slh fØ;k,a tks mlds izhizk;kslsIVso izfØ;k dks pkyqdjrh gS tSls%& [khapus okyh@/kDdk nsus okyh fØ;k,a]dqnus vkSj ,slh fØ;k,a ftlesa otu mBkus okyh] vf/kdncko ;k gYds nokc ls ?kqus okyh fØ;k,a vkrh gSA

- dqN ,slh fØ;k,a tks ?kj dh fnup;kZ esa dke vkrh gStSls & ,d iafDr esa yxs gq, rfd;s mBokuk ;k mldhifDr cuok;k vkSj dqlhZ dks b/kj ls m/kj ys tkuk vkSjmlds lkFk Vx vkWQ okj [ksyuk tksfd bu izfØ;kvksa dsfy, izksRlkfgr djrh gSA& VjEiqfyu ij dqnukA& cPps ds Lrj ds vuqlkj dqN vkÑfr iTty djkukA

& ydM+h ds cykWDl ;k IykfLVd ds cykWDl ys dj dqNfMtkbZu cukukA& T;kehfr; vkÑfr;k¡ cukukA& eksfr;ksa dh i)fr dks /kkxs esa MyokukA& pkWd vkSj cksMZ ds lkFk [ksyukA& fpéksa dks dkVuk] eksVs ekseh jaxks ls jax HkjukA ;k pkWdls HkjukA& Iys MkW tSlh phtksa dks iz;ksx djds mldh dqNvkÑfr;ka ;k ,YQkcsVl cukok ldrs gSA& dqN vkSj Qu~ ,fDVohfVt dh fdrkc ysdj dk;Z djukA

mijksDr lHkh fØ;k;ksa dk lkajk�k ;g fd blls vkidks vkSjvkids cPps ds fy, vR;f/kd lgk;d gSA vkSj ;g lHkhfØ;k,¡ vkids cPps ds iwjs fodkl esa lgk;rk nsrs gSAblfy, budh 'kq:vkr fdft, vkSj mlds ckn vkidksavius cPpsa ls vPNk ifj.kke izkIr gksxkA

[ksy vkSj laosfnd ,fddj.k ¼Hkkx&nks½

*[ksy esa ifjokj dh Hkqfedk*

� Young peoplewith ASDparticipating atthe inaugurationof the NationalCentre for Autism


13

How Much TV is Good TV?

A question parents frequently ask is: My child loveswatching TV; how much TV can I let him watch. This isa difficult question and there is no straightforwardanswer.

MOSTLY parents have to use their judgment indetermining the value of any programme that their childwatches. Children can learn a great deal from watchingTV. But not all TV programmes have content thatbenefit children.

SOME children spend up to six or seven hours a daywatching TV which parents often use as a tool to keeptheir child with autism occupied. The same goes for thecomputer. Children largely watch song and danceroutines or cartoons on TV. For children with autism,the movement, colour and music of such programmesact as an attraction. However, such programmes do notteach the child anything worthwhile.

IF a child must watch TV, try and introduce content thatis stimulating, that the child can learn from. Whenchildren get too addicted to song and dance routines orendless hours of cartoons, it is then very difficult to getthem to watch educational programmes. Its like feedingyour child a packet of chips just before lunch: he wouldbe so full of junk that it would be difficult to feed himhis rice and dal.

CHILDREN who are introduced to stimulatingprogrammes at an early age, such as those on nature orwild life, enjoy such programmes immensely and learn

from them as well. Many go on to watching the newsand do so on a regular basis. TV time can also be a greatopportunity for a parent to spend time along with thechild, providing opportunities for communication andsharing.

AS for computers, their predictability of operationensure that children with autism often excel at their use.Many teach themselves how to turn on andoperate acomputer without ever having been taught. There arewonderful educational computer games available thatchildren can learn from. These range from games on theenvironment, on reading, numbers, and so on. Childrenwith autism often become adept at using and learningfrom these programmes. However, it is important to bealert and move on to more challenging games once achild has mastered one. Children can become addicted toa game and then it ceases to be a learning tool. A gamecan turn into an obsession and sometimes it can be verydifficult to wean a child off it.

BECAUSE the computer can be such a wonderfullearning tool, and because our children can grow theircognition through computer games, parents often allowtheir children many uninterrupted hours on thecomputer. However, while computers can teach ourchildren many things it does not help develop theirsocial understanding. So it is important to ensure that theopportunity for human interaction is not usurped by timeon the computer.

SO how much TV should a child watch, and how manyhours can a child reasonably spend on the computer.While parents can determine what length of time theyconsider suitable: an hour, an hour and a half, less ormore, they can ensure two things. One, that the TVprogrammes children watch and the computer gamesthey play are ones that they learn from, that challengetheir intellect, and that which are not mere obsessions.Two, that the length of time that the child spends ininteracting with �people� is definitely more than what thechild spends in watching TV or on the computer, andwith a greater component of �fun� than what either boxprovides.

BOTH TV as well as the computer are wonderfulteaching tools when well used. How they are used iscompletely up to the parents.

� The Inauguration plaque unveiled by Shrimati Sonia Gandhi


E L LH ENIP

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Q I have a son who is three and is an autistic child. Welive in Surrey in British Columbia, Canada. My son getsIBI treatment based on behaviour analysis at a schoolwhich has been supported by the provincial government.He has been showing some improvements in hisbehaviour. The reason for this mail is to inquire about any schools,organisations in India that offer IBI to children withAutism. As we have decided to settle in India in the verynear future, but as informed earlier, we are looking forschools/ organisations that have professionals trained inbehaviour analysis so that my son keeps getting theintervention therapy.

A There are a few schools in India that have IBI basedteaching methods – more specifically Verbal Behaviourbased. The ones we have information on are: DikshanAutism Society West Bengal Kolkata<[email protected]> Contact: Indrani Basu SAIMumbai<[email protected]> Contact: Kamini Lakhani We CanChennai<[email protected]> Contact: Gita Srikanth

Q I am a government servant working in UP cadre. Myson is 10 years old and has mild autism. He is hyper andlacks wisdom. He has delayed speech and repeats words.He always carries an empty bottle in his hand which hehits against things. He sleeps in the day and wakes up atnight. He watches a lot of TV. Please suggest relevanttherapy, institutions, and hostel (if available) in India.

A We understand your concern for your son and hope toguide you as much as we can. First, a little about theAutism Spectrum. As you may already be aware, Autismis a lifelong developmental disorder, which ischaracterised by three core difficulties. The concerns youhave identified fit these three difficulties. For instance,delayed speech can be quite typical of children on the

spectrum. This may be accompanied by odd or formalspeech or unusual use of words and phrases. Holding onto bottles, banging them on surfaces (preoccupation with,and non-functional use of the item, or fulfilling a sensoryneed by hitting the bottle), and different sleep patternsmay be considered a form of ‘inflexibility of thought andbehavour’ which is again, a core deficit seen inindividuals with Autism. Thirdly, a different quality ofpeer interaction and social interaction in general is also acore difficulty.

It is quite subjective to classify Autism into mild,moderate or severe as each individual shows a differentskill profile. So while your son may excel in one area, hemay be behind on others such as speech and language.Another child with the same diagnosis may have greatlanguage but may score differently on other abilities. Itmay therefore be more useful to isolate each strength anddifficulty and to see how to use those strengths to pushyour son’s development further.

As you mention, the next step for you would be to find atrained autism therapist with sound understanding of yourson’s difficulties and to begin a training programmebased on his individual needs and strengths. In UP weknow that the King George Medical Hopsital in Lucknowhas a programme for children with autism. We currentlydo not have information of other institutions andtherapists from UP, though there may be a few others.

You may also arrange to visit us in New Delhi for a threeday extended programme to assess your child’s abilitiesand to start you off on a basic programme.

While there are not many residential facilities in India foryoung children, we will send you the list of facilities wehave with us. We however recommend highly that parentsand families are fully involved in their child’s educationalprogramme, whether at home, school or at any otherfacility.

Q My son is 23 months old, but he has not startedspeaking. But on his own he has learned certain things byobserving other family members. He is very active, enjoysplaying with other children, loves music and watching TVand builds with blocks at a good level. He feeds himself.


15

He tries to copy and do what others do. He is healthy andhas achieved all milestones except two:

1. His speech is not clear except a few words like 'bye',and 'ma', and that too not meaningfully sometimes.

2. He follows only a few commands like ‘do’, and comeswhen called. But if we show him something he does notpay attention. He prefers to do what he wants: like he willbring rotis and serve you if he sees that you have finishedyour roti and your plate is empty. When he wants to eatsomething he will try and get it or he will point to theobjects and take us to the kitchen. He is able to make usunderstand all his wants: whether he wants to go to thetoilet or to the market.

I have no doubt about his intelligence as he leans veryfast by observing others. I just want to know what thereal problem with my son is. Are these the symptoms ofAutism?

Finally, can I undertake the proposed two year bio-medical programme of chelation and HBOT for my son.

A It is difficult to say on the basis of your descriptionwhether your son has autism or not, as for that it wouldbe essential to make an observation of your son’sbehaviours and have an interview with you and your wife.Receiving a diagnosis for your son’s condition should beof top priority, as that would help direct you to anappropriate treatment approach. If we know where youare based we could refer you to a competentdiagnostician, ideally a developmental paediatrician or achild psychiatrist with extensive experience of autism.

As for undertaking the advised bio-medical programme,perhaps you want to first arrive at a diagnosis for yourson’s condition before you can consider whether to go forit or not?

Q My child is now six years old. She is suffering fromchildhood autism and taking treatment at Tamil Nadu.My wife is taking her to Speech Therapy classes dailyand giving her physiotherapy also. Please advice whattype of puzzles and toys would be suitable for her. A We do not have any list of toys specific to childrenwith autism because each child is different. Though manychildren with autism do not show much interest inconventional toys, toys that provide sensory input areliked by most of them. These days there is a wide variety

of such toys available. Cause and effect toys that producesound / light/ movement on pressing a button are easilyavailable and at very affordable prices

Get your daughter simple toys that can enhance herlearning in various areas. Play dough, colourful blocks,activity centres, cush balls, beads, are things a child canplay with and they also enhance motor skills.

Many children like to build blocks, scan through books.Picture books like the ones in the Lady Bird 'Learning toRead' series, Children's Book Trust and National BookTrust, may be useful as these have simple pictures thatthe child can identify with.

Jigsaw puzzles can be fun if the child can to fix them.Some would enjoy playing with educational puzzles suchas the ones on ‘opposites’, ‘things that go together’, etc –that often come in interlocking sets. However a child withautism may just follow the pattern of the interlocking cut-outs and fix the correct pieces together without everfollowing the concept. Therefore in the latter case youcan get cards that are simple square pieces (brands suchas Creative and Funskool have them) and come ininteresting sets such as:

• what comes next picture sequencing• match and learn• opposites

Every child with autism is different and so are theirinterests. The best toys or equipment would be the onesyour child likes and finds exciting. It is not what the toysare but how they are used that is important. Even asimple ball if rolled at a line of empty upright plasticbottles that get knocked down could be great fun providedthe entire process of rolling and knocking down is donewith cheering and excitement.

Initially let your daughter lead the play. Join her in herkind of play and then slowly modify and model play forher to imitate. Use toys like dolls and kitchen sets toenhance pretend play through imitation. These can beused by the speech therapist as well.

You mention in your letter that your child has ‘childhoodautism’. It is important to be aware that though the term‘childhood autism’ and ‘early infantile autism’ issometimes used, autism is not a childhood disorder that‘goes away’ as the child grows up. It is a lifelongcondition. Of course it is also a condition in which there


16

can be often great progress if the intervention isappropriate and early.

Q I have a question regarding the Turn Takingprocedure that you have outlined on your website – I findit incredibly helpful and was hoping for some clarificationaround what the visual should look like for turn takingbetween two or more children.

A Not sure which article you might be referring to.However, here is an illustration of where two children Tiaand Sunny take turns throwing a ball. Each is to takethree turns. First Tia, then Sunny, then Tia, then Sunnyagain, and so on. As each child takes a turn they strikeout one of the balls on the illustration (or the facilitatormay do it for them). This gives a clear indication ofwhose turn next and how many turns left etc. Trust this iswhat you wanted:

Q My autistic grand daughter is 10 yrs old. She attendsregular school in Standard Three. Of late her hyperactivebehaviour in school has increased a lot and is causingconcern to all of us. There is nobody in the school whocan keep a watch on her throughout the school hours toprevent this behaviour. The school has no full timeSpecial Educator or Counsellor, and as such the teachertries to manage her abnormal behaviour whichever bestway she can.

My grand daughter attends therapy sessions with thespecial educator on three days and with a behaviouraltherapist on two days. She destroys the pictures that arestuck on the wall, or sometimes she throws her tiffin onthe floor. She sometimes continues to laugh for a longtime or sometimes bursts out crying for no reason.Academically she is very good. She scored 78% marks inthe unit test with excellent remarks. Can you offer ussome remedial measures which will effectively controlher abnormal behaviour?

Tia Sunny

A Your grand daughter seems to be managing well withthe academics as many other children with autism butshe appears to have other difficulties in coping with theschool situation. Very often these difficulties can act astriggers for challenging behaviors.

One needs to find out what happens before she resorts totearing paper displayed on the walls or laughing, whenthese behaviours happen, whether they occur withdifferent teachers or with the same teacher. Similarly it isimportant to know what the teachers do when sheexhibits these behaviors. If despite the interventionbehaviors are increasing as mentioned by you then it isvery clear that even though her school may be trying itsbest to support her and deal with the challengingsituations, the strategies are not working to reduce thebehaviors.

It is rather difficult to comment on the possible reasonsand give suggestions without having answers to thesituations referred to above. However we can suggest afew things that can be tried out. But most crucially it isimportant to remember that your grand daughter hasautism. Her apparent skills often make us expect farmore from her than she is capable of.

In addition, your grand daughter is ten years old and isentering adolescence. For her this is a new phase of lifein which she may be confused with her own bodilychanges and also the awareness of being different fromother children may be setting in gradually. Therefore thefamily needs to have a lot of patience and acceptance anda positive attitude. We find that families are generallyaware of this and surely you may be having the sameapproach.

Provide her with an environment that is predictable andprepare her about changes if and when they happen. Forexample in case of a change in the timetable talk about itin advance. Tell her clearly and specifically about thechange. Your grand daughter has autism. Despite hercommunication skills she may not be able to ask �Whyare we not taking out our Math book in the Math period,�and get confused and stressed about it.

Try and keep instructions to her brief, precise, andconcrete. Do not assume she will follow an instructionthat has been given in general to the entire class. Theteacher may have to take your grand daughter's name,pause to get her attention, and then repeat theinstruction. For example if the teacher has told the class,


17

�Take out your work books and give them to the classmonitor�; she may have to address your grand daughterby her name: �Shweta, take out your English workbookfrom your bag. Now give it to Shalini�.

You can practice having your grand daughter learn to payattention in a group at home, where the mother says,�Everyone, come for dinner�.

Classrooms have a lot of distractions that can beproblematic for a child with autism. Teach her to dealwith these at home. Expect her to complete her task orfollow instructions with the TV or music on. Contriveinterruptions that she has to work around.

State clearly what is expected of her. Be concrete. Sayand give the child time to process your instruction in her

mind and then carry it through. Avoid verbal overload. Toomany instructions may be confusing.

Your grand daughter has to be helped to see that when shedoes NOT tear paper she gets praise and attention. Catchher when she is good and by and large do not provide toomuch attention for inappropriate behaviours.

During times like the tiffin time a lot of interactions takeplace between children and obviously she has difficultiesin interacting with her peer group. Therefore she maythrow her tiffin in order to either get attention of others orout of confusion. She needs to know what she can doduring recess. Assign an area for eating that is quiet andshe is in the company of very known and preferred kids.Give her clear indication of what she can do after she hashad her tiffin and still has time before the next class starts.

Dr Bernard Rimland, founder and director of the AutismResearch Institute, passed away on Tuesday 21 November2006. Dr Rimland was 78. To many parents whosechildren have been diagnosed in recent years, Dr Rimlandrepresents the Autism Research Institute, originally knownas the Autism Research International, which providesinformation and guidance on the use of various alternativetherapies. But Bernard Rimland�s most remarkablecontribution was the publication of his seminal work,Infantile Autism: The Syndrome and Its Implicationsfor a Neural Theory of Behavior.

The book was published in 1964 when psychoanalysis forautism, and Bruno Bettleheim�s �refrigerator mothers�theory reigned supreme. When it was believed that coldcalculating parents who deprived their children of love wasthe cause of autism. Based on these theories, DrBettleheim advocated the separation of the children fromtheir supposedly unloving parents. Treatment oftenespoused the use of having the children display abusivebehaviours towards dolls and other objects representingtheir parents. These were theories that destroyed manyloving families. The publication of the book was the firstand the most significant blow against these destructivebeliefs.

Dr. Rimland�s journey with autism began with his sonMark Rimland, who was born in 1956. A barely knowncondition in the USA at that time, Mark�s autism wasidentified by his mother Gloria who recalled reading incollege about a condition that appeared to mirror her son�s.Faced with the then widely held belief that they, theparents, were the cause of Mark�s autism, Rimland set out

to find all he could about the disorder. In the process herealized that autism was clearly a biological condition, andhad no relation to the quality of love and care that childrenreceived. This led him to write the book Infantile Autism:The Syndrome and Its Implications for a Neural Theoryof Behavior which changed the autism scene forever.Parents of children with autism everywhere owe a huge debtof gratitude to the person who ensured that we do not gothrough life with a burden of blame.

A pioneer who reversed the trend of parent blame, DrBernard Rimland's work lead to the development of moreappropriate ways of helping children with autism. Alongwith other parents like Ruth Sullivan, Clara Claiborne andDavid Park, Dr Bernard Rimland went off to form theSociety for Autistic Children in the USA which is nowknown as the Autism Society of America. Started as aparent support group in the same way as most nationalsocieties for autism across the world, it is now a leadingorganisation for autism advocacy in the USA.

In India as in many countries in the world the nightmare ofbeing blamed for our children�s condition is still not over.Many parents continue to be routinely asked about theirfamily dynamics and relationship between spouses, whetherthey ever fight; whether the mother goes out to work; and soon, when a diagnosis is made. The greatest tribute that thoseof us who work with children with atism and their familiescan pay to the memory of Dr Bernard Rimland is tointensify our efforts to change this destructive belief.

Autism Research Institutewww.AutismResearchInstitute.com.

Dr Bernard Rimland


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