C O N T E N T S 2014 Vol. 9 Issue 1.pdf · AUTISM NETWORK: VOL 9 ISSUE 1~ APRIL 2014 APRIL 2014 VOL 9 ISSUE 1 C O N T E N T S Action For Autism is a registered, non-profit, national

AUTISM NETWORK: VOL 9 ISSUE 1~ APRIL 2014

APRIL 2014 VOL 9 ISSUE 1

C O N T E N T S

AAAAAction 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.

Autism Network does not accept advertisements. Expenses are metthrough memberships, donations and sponsorships, from ourreaders, friends and well wishers. This journal is for free distribution.

INFORMATIONFor information on receiving the Autism Network write to:Pocket 7&8, Jasola Vihar, Behind Sai Niketan, Opp. Gate 6Sector 8, SFS Flats, New Delhi - 110025. Tel: 40540991/2

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 at the above given address orE-mail: [email protected]

Editor: Merry BaruaAssociate Editor: Indrani BasuEditorial Board: Indrani Basu, Dr Nidhi Singhal, Dr Vibha KrishnamurthyDesign & Production: Bindu Badshah, Sudhir Pillai

In referring to the child with autismIn referring to the child with autismIn referring to the child with autismIn referring to the child with autismIn referring to the child with autism, Autism Network often uses‘he’, ‘him’ and ‘his’, not as a prejudice against the girl child withautism, but for reasons of simplicity and because the vast majorityof children with autism are male. However, many articles also use‘she’, ‘her’, and ‘hers’.

Website:Website:Website:Website:Website: http://www.autism-india.orgHelpline Email:Helpline Email:Helpline Email:Helpline Email:Helpline Email: [email protected]

Page One

Behavioural 'Problems' and Autism

The Rights of Persons with Disabilities

Bill 2014: An Opportunity Lost for

the Autism Sector?

Book Review: 'No Looking Back'...

Caring for High Functioning Autism

Cont..(Hindi)

My Life

CGPA Score of 10...a Cakewalk?

Interactive Classes at the National

Centre for Autism

Helpline

AAKAR: Early Intervention School

Readiness Programme

Upcoming Workshops

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If you want to help, write to AFA or call:If you want to help, write to AFA or call:If you want to help, write to AFA or call:If you want to help, write to AFA or call:If you want to help, write to AFA or call:

• AFA: 40540991/2 • Reeta: 9811103702

WISHLIST !• Apartment/House for Residence

for people with Autism• Playdoh, pull along toys,

light and sound making toys, Lego• Pretend play toys like: Dolls,

doll house,doctor’s sets, furniture sets,grooming sets, kitchen sets, tea sets etc.

• Indoor plastic slide, see saw• Computer games, X Box Konect

• Computers that can support graphics• Trampoline

• Music asystems (CD players,MP3 players, ipods) • Head phones

• Coffee vending machines• Volunteers: For Yoga, Art & Craft,

Music, Respite care

Cover Illustration

'I want to be included- Circle of friends'By Ujjwal Sharma, 18 years old. Ujjwal lives in Gurgaon

and has appeared for the NIOS SECONDARY.

AUTISM NETWORK: VOL 9 ISSUE 1 ~ APRIL 20134

PAGE ONE

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Suresh Kumar* has been running from pillar to posttrying to find out how to get a disability certificate forhis son Kaustav. Kaustav* will be appearing for his10th Boards. Kaustav has motor difficulties and needsextra time to complete is papers. As a student withautism, he is entitled to the extra time. However, he hasbeen asked to submit a disability certificate in order toavail of this entitlement. That is when they approachedAction For Autism.

This is a dead end that AFA is often faced with. Nogovernment hospital (authorised to issue disabilitycertificates) will issue one for autism. They will give onefor mental retardation and might mention autism there.But Kaustav will not be eligible for a certificate formental retardation as he ‘maxes’ the tests with ease.The only alternative is to plead with the authorities toallow him the extra time on the basis of a proof ofdiagnosis from any reputable institution or authority.

This is still a work in progress.

The situation is not much different for Gambhir*.

Gambhir’s family travels down to Delhi once a month ortwo, for a consultation at AFA. While their time at AFAis sponsored, they can ill afford the train fare for three.But without a disability certificate they have no optionbut to manage out of their meagre earnings.

Action For Autism India fields new queries from familiesevery day. These range from those seeking informationon services in or closest to their hometowns, sharingconcerns about schooling, seeking information onaccommodations that their child should rightfully haveaccess to, requesting support with behaviours that thefamily had difficulty understanding and find challenging,as well as many seeking support for grievance redressal.

Another kind of query we often field is to do with adisability certificate. These are usually to do withentitlements, where the certificate can act as apassport to ensuring rights.

But, of course as most of our readers are aware, thereis currently no such thing as a disability certificate forautism. Yes some have obtained disability certificatesfor intellectual disability. Others have not been

successful in this. And still others have decided as amatter of principle to either get a disability certificatefor autism or do without certification and suffer theconsequences.

It is several years now that an assessment tool – theIndian Scale for Assessment of Autism - expressly forthe certification of autism has been approved. But thePersons with Disabilities Act 1995 that mandatescertification does not include autism in its list ofdisabilities. The National Trust Act which includesautism does not have anything on certification. Despiteseveral efforts to bring about a brief amendment in theNational trust things have not changed.

This is one of the very many reasons why the autismcommunity is so strongly in support for the passing ofthe Rights of Persons with Disabilities Bill (RPDB). It isthree years since the RPDB 2011 of which the writer wasa member of the drafting committee, was finallysubmitted after wide consultation with stakeholders.

An important aspect of the RPDB is the inclusion ofmany new disabilities, Autism amongst them, that weremissing in the PWD Act 1995. The drafting process ofthis bill to ensure people with disabilities their rights ascitizens of the country, brought into focus the sharpdifferences of perspectives and opinions within thedisability community.

With three years having already passed since the initialsubmission, if the bill was allowed to lapse before theelections, then a whole new process would have to startafter the new government came to power. That wouldmean an indefinite wait especially for the newly includeddisabilities to access any smidgeon of rights. Keepingthis in mind, through the last year, and especiallytowards the end of 2013 there has been a concertedcampaign to pass the bill.

The 2011 bill went through two avatars and the currentRPDB 2013, is undoubtedly a much-diluted version ofthe earlier bill. Early this year the disability sector wassplit right down the middle between those who felt that

(cont on page 18...)


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Behavioural ‘Problems’ and AutismMerry Barua

To even the most loving of carers, the individual withautism ‘has a problem’. So even when helping the childwith autism, the premise is that they have a ‘problem’that needs to be fixed. If we want to truly help, andenable persons with autism empower themselves, thejourney has to perhaps start with trying to understandautism; and more importantly by changing the way weview people with the condition. This paper expands onwhy we need to move from the perspective of viewingindividuals with autism as people with problems; toseeing them as people with a valid way of being.

AUTISM is one of the most complex conditions for us tounderstand. By ‘us’ I refer to those of us who do nothave autism – the non-autistic population. Of course tothose who have autism, their condition is something thatis neither complex nor strange – it is what it is. Autism,for those who have the condition is just a ‘way of being’.Just like being Indian is ‘my way of being’. If I went tolive in the Netherlands, I might have a home like most ofthe native people there, I might dress just like them, Imight even eat the same foods they eat. But mysensibilities will remain uniquely Indian. So will myresponses to many situations. For instance, having my30 year old autistic son living at home with me will seemperfectly okay to my Indian sensibilities. But to a nativeof the Netherlands it will seem odd that someone beyondthe age of 20 still lives with his mother. My wanting tocook the occasional dal and rice will not be the noveltythat it will be in their homes. Neither will my wanting to‘prepone’ a visit to India. Only Indians ‘prepone’ as weall know! And no amount of dressing ‘Dutch’ is going totake the ‘Indianness’ out of me.

WHY am I starting my piece with this introduction?Because I want to, at the start, establish a few things.One, autism is not a ‘problem’; it is a ‘way of being’. Itis a condition that people have. Just because someonewants to view autism, or any other condition, as aproblem, does not make them so. Just as my being Indianin the Netherlands or Australia does not make beingIndian a problem. Two, being autistic is not a tragicsituation. I deliberately use the term ‘autistic’ here.Being autistic defines the person. People with autism are

fine with being called ‘autistic’. They don’t care whatyou call them. What matters is what our feelings arebehind whatever we call them. We may say “personswith autism” and think “goodness, what a sad tragicweird guy!” and we may say “autistic” and have nonegative notions about the condition. So the terminologydoes not matter. What matters is what is in my mind.

WHEN a professional acquaintance suggested initiatinga discussion on ‘Behavioural Problems and Autism’,I thought this was exactly what we need to address.Everyone working with people with autism, whethercaring professionals, or loving parents, we all tend to seebehaviours in people with autism as ‘problems’. Andthen we all end up creating more ‘problem behaviours’ inorder to deal with the ‘problems’ we want to get rid of inthe first place! Instead, the education of children withautism needs to shift its focus towards not just ‘treating’autism, but rather towards an effort to understand autism,to understand the culture of autism, and what lifeexperiences are like for a person who is on the spectrum.

WORKSHOPS that address behaviours that the non-autistic world perceives as challenging, usually start witha segment on ‘understanding autism’. But most of usskip that session because we all feel that we know whatautism is. What we actually do know is the clinicaldefinition of autism: that it is a ‘social communicationimpairment that is pervasive, with repetitive actions andbehaviours’. Actually that tells us very little aboutautism, and mostly a deficit-oriented point of view. Itdoes not help us understand the person behind thedefinition. It does not help us see that the autisticperson’s communication as ‘different’ from non-autisticcommunication, or the very unique and distinctunderstanding of the social rules of the neurotypicalworld.

AS a result when we start from the very clinical anddeficit oriented understanding, then we start off fromviewing the autistic worldview as not valid.

SO when we see a child flapping and jumping, our firstdesire is to somehow ‘stop that behaviour’ because it is

This article is reprinted from AWARES CONFERENCE 2010


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embarrassing for ‘us’. We do not see it as valid for theperson with autism; as perhaps the child’s way of copingwith a new situation. Or maybe an expression ofhappiness. Or perhaps a bodily need that the child isfulfilling. Or any other of a range of reasons.

SO some of us ‘punish’ that ‘unwanted behaviour’ ofjumping to make it go away. Or look for biologicalreasons for that behaviour and dive into diets andmedication in order to get rid of the behaviour. It doesnot occur to us that there could be validity in the child’sbehaviour. That we need to understand autism, the child,and thereafter the behaviour. Our focus remains firmlyon the behaviour that makes us, the non-autisticuncomfortable. Rarely do we consider what it means forthe person with autism.

If we want to help our children with autism, we haveto start by first understanding their world.

WHAT we perceive as behaviour problems are mostoften an effort to communicate different emotions,feelings and wants. So the child jumping and flappingcould at different times have any one, or a combinationof the reasons stated above. Let us explore a few typicalscenarios.

SHEILA is waiting for her mother to pick her up. Hermother usually comes in at 1:00 pm; its 2:00 pm already.No one has told Sheila that her mother will be late today.Her teacher has mentioned it in passing, but too swiftlyfor Sheila to retain that piece of information in her mind.No visual instruction has been given – and we all knowthat people with autism thrive in visual environments.So now Sheila is a little stressed. Mother has not come inyet. It’s long past the time she comes in. When is shecoming? Will she come at all? And in order to cope withthis disordered world Sheila does the only thing sheknows, she jumps and flaps vigourously. (Some of us ina similar situation would have lit up a cigarette; bittenour nails; walked up and down; all considered ‘accepted’behaviour in the non-autistic world).

RATNESH has made great efforts to sit quietly in classall day. Now his body feels numb and out of synch. Itsbreak-time and he needs to unwind. The only way heknows how is by either sitting on a swing, or rocking andflapping. The swing is not available, so he does the latter.

TEACHER is saying: “Tarun get your snack and sitdown”. Tarun opens his bag but today the blue box withhis snack is not there. He is distressed and is flapping to

get someone to address this issue. Instead his teacherkeeps saying: “Tarun stop acting stupid. Behave yourage.” Tarun gets more and more distressed, flapping andjumping with greater vigour. (If Tarun’s younger brotherRaskhit were in the same situation he would have said:“Teacher my snack box is not in my bag. I thinksomeone may have taken it out”. But then, Rakshit doesnot have autism. Tarun does).

WHAT was the response of the non-autistic world inthese situations?

SHEILA has been told: “If you don’t sit still you will notgo home when mother comes.” Just the response thatwould get Sheila more stressed and flap with greatervigour!

RATNESH who has controlled his desire to rock rightthrough the morning has then been told not to do so inhis free time as well, as “it is not smart”: Without therelease this gives him, he would be more wont to rockingand flapping when class resumes after break; and as onearlier occasions will probably then be sent out of classfor ‘disturbing’ the others.

TARUN has been told: “Okay you don’t want yoursnack. Then come and sit down.” In frustration hewhacks the boy next to him, ensuring that he had abigger ‘problem behaviour’ because of course he DIDwant his snack.

AM I then saying: let our kids rock and flap all day long?(Well, if they are not harming anyone by doing so -except our egos! - then why not)! But no, that is not whatI am suggesting. What I am saying is to try andunderstand what they are doing and why, and providingthem with answers, alternatives, explanations, strategies,anything in short, that would enable us – the autistic andthe non autistic - to meet each other half way.

THE only way to help children with autism who have so-called behaviour problems is by understanding them,teaching them how to communicate with our world,helping them learn to negotiate our social world, andbeing what I can only term cross-cultural interpreters.

I can think of no better way to end this than to narrate asmall incident.

LAST week when Jatin finished his chores, as a specialtreat Mira said to him: “Let’s go for an ice cream.”Usually they buy their ice-cream when they visit their


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neighbourhood market. Today, since they are home,Mira leads the way to the ice-cream vendor on themain road, which is in the opposite direction from themarket.Jatin is confused. He wonders: Why are we taking theroad we take when we go to school? Mama had said wewill get an ice cream. But now we are going to school!A non-autistic individual in his situation would havequeried: “Why are we going to school?” Or, “Are wenot going to have an ice-cream?” Or any number ofvariations. Jatin communicates with phrase speech. Buthe is still not asking these questions. Instead he isstressing about what seems to him a change in plan.

MIRA senses his confusion and says, “We go this wayto school. Are you wondering where we are going now?You could ask, ‘Where are we going’?”

JATIN gives a quick sideways look at his mother andrepeats, “Where are we going?”

MIRA explains, “We are going for an ice-cream. Wewill get the ice-cream from the ice-cream vendor on themain road.”

NOW Jatin’s smile is back.

In another scenario Jatin might have got confused, andthen distressed, that instead of the promised ice-cream hewas going to school. The distress left unaddressed, in hisfrustration the six-foot-two youngster might have pushed– something he tended to do when confused and / orfrustrated. And depending on the way Mira handled that,the whole situation could have spiralled out of control.

THAT none of this happened was only because Mirarespected and acknowledged her son’s autism and hisdifferent understanding of her world; and acted as a cross-cultural interpreter.

SO what am I saying? I am saying that the norm is toexpect the person with autism to understand our worldand ‘act non-autistic’ so that we who do not have autismcan feel comfortable. If they cannot, then we label themas having ‘behavioural problems’. We, who teachchildren with autism, we know our world, the world ofthe non-autistic.

WE can also make the effort to learn to understand theautistic world. With our understanding of both worlds, wecan help persons with autism navigate the complex socialworld that we inhabit.

The Rights of Persons With Disabilities Bill, 2014:An Opportunity Lost for the Autism Sector?

Shubhangi Vaidya

We have to educate ourselves about the issues thatconcern our children’s rights and entitlements. Untilsuch time as our children are able to lobby forthemselves, we, their families must stand united and tryto secure for our children their rightful place in thesun.

31ST December 2013 was a cold evening, at the peak ofDelhi’s winter. Undaunted by the chill, a large gatheringof people with a range of disabilities assembled at theJantarMantar to demand the passage in Parliament of theRights of Persons with Disabilities Bill which had justbeen approved by the Cabinet. Similar demonstrationswere taking place all over the country.The Bill was theresult of years of consultations and discussions acrossthe disability sector and was seen as a major moment inIndia’s disability rights movement.

THE Bill was intended to replace the existent Personswith Disabilities (Equal Opportunities, Protection ofRights and Full Participation) Act, 1995(PWD Act)whose most crucial provisions pertain to rights toeducation, employment, rehabilitation and reservationsfor persons with seven identified disabilities includingblindness, low vision, leprosy, hearing impairment,locomotor disability, mental retardation and mentalillness. Persons certified by a medical authority as havingat least forty percent of a given disability are eligible forbenefits, and the ‘Disability Certificate’ is a crucialdocument that opens the doors to access, opportunitiesand inclusion.

AUTISM is not included in the PWD Act; it is one of thefour conditions along with mental retardation, cerebralpalsy and multiple disabilities that come under the


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purview of the National Trust Act of 1999,which isbasically concerned with issues of guardianship andprotection to persons with high support needs. Over theyears, it became apparent that the PWD Act, a landmarklegislation for its time, had a number of gaps and failed toinclude many disability categories. However, attempts tointroduce amendments met with little success.

ONE of the major international developments that had agreat impact on disability rights and legislation all overthe world including India was the adoption of the UnitedNations Convention on the Rights of Persons withDisabilities (UNCRPD) by the UN General assembly inDecember 2006. India ratified the UNCRPD on1 October 2007. The UNCRPD is a human rightsinstrument which aims to promote, protect and ensurethe full and equal enjoyment of all human rights andfundamental freedoms by all persons with disabilities.

AS such, it is to function as the guiding principle on thebasis of which signatory countries are expected tostructure their laws, programmes and policies for personswith disabilities. In order to harmonize the existingdisability legislation in the country with the UNCRPD itwas decided to draft a new, comprehensive disability lawrather than merely amend the existing one.

ONE of the important points to bear in mind is that theglobal disability discourse has moved from the ‘medicalmodel’ to the ‘social model’. While the medical modelviews disability as an individual problem or deficit thatis defined in terms of what is ‘wrong’ or ‘lacking’ in anindividual’s mind or body, the social model viewsdisability as the product of social practices which excludeand isolate people with ‘impairments’. In other words,disability is socially produced. For instance, a personwith ‘impaired’ limbs is disabled by society becauseshe/he cannot use public spaces and facilities which aremade only with ‘able-bodied’ people in mind. So theonus on integrating persons with disability into themainstream falls on society. It is this fundamentalphilosophy of the social model that is reflected in theUNCRPD. It was expected that the new law wouldreflect this understanding of disability and focus ondisabling environments rather than just medicalmeasurements and diagnoses of disability.

THE Ministry of Social Justice and Empowermentconstituted a committee comprising stake-holders acrossthe disability sector to draft a new Bill in compliancewith the UNCRPD. The Centre for Disability Studies,NALSAR Law University, Hyderabad, compiled a Draft

Rights of Persons with Disabilities Bill in June2011.However, it drew a great deal of criticism from manyquarters. It was subsequently replaced by the draft Rightsof Persons with Disabilities Bill 2012, which was by andlarge acceptable to most of the stake-holders in thedisability sector.

IT was believed that the Draft Rights of Persons withDisabilities Bill 2013 approved by the Cabinet would besubstantially similar. However, when a copy of the draftappeared in the public domain, it became apparent that itwas a considerably watered down version, with a numberof provisions that were unacceptable to the disabilitysector as a whole. The sector which had lobbied in unisonin December 2013 was split down the middle. One sectionargued that the RPD Bill 2013 was in total violation of theletter and spirit of the UNCRPD and a betrayal of theaspirations and hopes of the disabled community; anothersection felt that it could be salvaged by including a list of‘non-negotiable’ amendments and that it should be passedin the forthcoming session of Parliament which would bethe last one of the present government.

THE stakeholders in the ‘developmental disabilities sector’which included the autism sector, by and large supportedthe second viewpoint as the Bill was far more inclusive inits scope than the PWD Act and included a number ofhitherto neglected disabilities including autism. Theyagreed that it was by no means a perfect Bill, but lobbiedhard in its favour, because so much time had been spent inbringing it to this critical stage. A national election wasround the corner, and disability, always a marginalizedissue in the public realm, would once again disappear fromthe public radar and those unrecognized disabilities whichwere on the verge of finding inclusion in a rights basedlegislation would be out in the cold.

AS matters panned out, the Bill was not passed in itspresent form in Parliament and was referred to aStanding Committee. Multiple controversies andacrimonious debates between senior activists and leadersof disabled people’s organizations, vociferous protests anddharnas for and against the passage of the Bill exposed thesharp cleavages within the sector.

SOME of the contentious issues in the Bill include theclause that says, “no one can be discriminated on the basisof disability..unless..it is a proportionate means ofachieving a legitimate aim”. Activists argue that thisclause can be misused to discriminate against persons withdisability as it is not clear what these ‘legitimate aims’actually are.


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THE clauses related to legal capacity and guardianshipin particular have led to serious differences of opinion,with the autism sector arguing that adequate measuresmust be in place to ensure support and guardianship. Abalanced and nuanced view on the subject is critical asthere are people who will always need a high degree ofcare and support and for whom ‘full legal capacity’means little or nothing.

THERE are also debates on the issue of reproductiverights. There is a sub clause in the Penalties andOffences section of the Bill which states that anyoneperforming a medical procedure to terminate thepregnancy of a disabled woman against her consent willbe punished except in severe cases of disability. Activistsargue that this can be misused as it does not specify whatis ‘severe disability’ and therefore, all disabled womenpotentially stand to lose their reproductive rights (seeAmbaSalelkar’s article ‘No Piecemeal Change Can FixOur Terrible Disability Bill’, Grist Media, dated 4th

February 2014 at http://in.news.yahoo.com/no-piecemeal...).

ACTIVISTS are also very disappointed that the Bill doesnot state that the Chairpersons of DisabilityCommissions must compulsorily be persons withdisability. If the National and State Commissions forWomen, for example, are headed by women, why isdisability treated differently? This is certainly a validquestion.

WITH regard to reservation of posts for employment, theBill says that posts would be identified in establishmentsfor different categories of disability, which will lead to‘ghettoizing’’ (to use Amba Salelkar’s term) them incertain kinds of jobs and not enabling them take up workof their choice by making reasonable accommodations. Theentire Bill, it is argued smacks of a ‘welfarist’ approach inwhich the Government is doling out charity rather thanensuring empowerment and rights.

WHILE these objections certainly merit seriousattention, there is no doubt that the Bill also includesmany progressive and positive aspects. A group of cross-disability activists (Rama Chari and others) in adocument titled “Why are we in favour of passing TheRights of Persons With Disabilities (RPD) Bill?” (http://deoc.in/pwdbill.pdf dated 19th February, 2014)persuasively argued for the passage of the Bill whilesimultaneously highlighting the work that needs to bedone regarding its contentious points. Amongst thepositives is the inclusion of nineteen disabilities in its

ambit with the provision for including more in future.Reservations in educational institutions and inGovernment jobs are raised from 3 % to 5% thuswidening the net of beneficiaries.

THE Bill mandates governments to take special measuresto protect the rights of women and children withdisabilities; it provides rights equally with others to ownor inherit property and widens the ambit of socialsecurity schemes and the quantum of assistance that canbe provided. Despite these positive features and the realurgency expressed by a section of the stake-holders, theBill could not be passed.

THE events of the past few months have highlighted theneed for stake-holders in the autism sector to be aware ofand conversant with the on-going debates and engageactively with them. As the caregivers of persons withcomplex disabilities, we are naturally just too busy withour routines and managing from one day to the next.However, we also have another major duty as activistsand advocates for our children.

WE have to educate ourselves about the issues thatconcern our children’s rights and entitlements and makeour voices heard as loudly and clearly as those of thevocal self-advocates who are able to articulate theirconcerns and issues and get policy makers to listen totheir voices. Until such time as our children are able tolobby for themselves, we, their families must standunited and try to secure for our children their rightfulplace in the sun.

The training is for those who love children,enjoy a challenge and consider teaching an exciting

career option. This two-year training opens upa whole new world of understanding people andviewing diversity. While placements are assuredfor those who successfully complete the training,

there is also the scope of eventuallymoving to areas of advocacy and rights.

Diploma In Special Education(Autism Spectrum Disorders)

An RCI recognised two-year training

For inquiries, please contact:Aditi Rao, Trainings Coordinator

Email: [email protected]: + 91 99906 72647 Tel: +91 11 4054 0991-92


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What do you say about a 22-year-old girl whose spineis shattered in a car crash? That her life is over before ithas even begun? That she will lead a life of dependenceand misery and become a ‘burden’ on her family? Thatshe will be seen as a deficient, unattractive being whocan never hope for romance, love and conjugality?

SHIVANI Gupta’s autobiographical account challengesthese deeply entrenched cultural stereotypes aboutpeople with disability. The author takes us through thetrauma after the accident that found her flat on her back,paralysed, and the harrowing experiences of the publichospital where she spent weeks staring at the dingyceiling, inhaling the overpowering odour of disinfectantand hearing the moans of fellow patients. Shivanichronicles her ‘rebirth’ as a wheelchair user and takes usthrough the everyday realities of her new life — personalappearance, clothing, body image, dependence upon apersonal attendant, bowel and bladder control, going outand shopping , re-negotiating personal relationships —with compelling candour.

HER narrative highlights the transient, fragile nature ofthe bodies we inhabit and the way society and culture‘disable’ people far more than their impairments do.Converting adversity into opportunity, Shivani embarksupon a career in rehabilitation and counseling at thenewly established Indian Spinal Injuries Centre. Anopportunity to visit and train in the UK empowers. Thereis a realisation that people with disabilities do not have tolive life on the margins and that society must beresponsive to their needs.

BACK home, she learns how to live independently, awayfrom the protective and sometimes overpoweringembrace of her family. She makes new friends, andmeets the man who is to become her ‘best friend, lover,comrade and guide’, Vikas Sharma. As opposites arewont to, the two are attracted to each other; as

professional colleagues they strengthen each other’shands and go on to do path-breaking work together inthe areas of accessibility and inclusive environments.

THEIR partnership, working, studying, travelling,‘learning to fly’ — results in the formation ofAccessAbility, a venture that seeks to ‘change theworld’ and make it fit for persons with disability, and notthe other way around. In their personal lives too, a majorbreakthrough takes place; their families accept theirrelationship and they marry.

SHIVANI’S reflections on the dynamics of becoming anIndian daughter-in-law and her identity as a woman withdisability are poignant. She narrates how she is carriedup a flight of stairs to meet her in-laws in their apartmentand sits awkwardly in the drawing room as the men havetheir Scotch and the womenfolk bustle around in thekitchen preparing and serving food!

FOUR months after the wedding, on their way toManali, Shivani and her family find themselves inanother terrible road accident in which Vikas and hisfather lose their lives. Shivani’s account of the days thatfollow is moving. Her experience of the frailty of thecorporeal body carries over to her understanding of loss,sorrow and pain, which are an inescapable part of thehuman condition. She seeks solace in the knowledge thatshe was blessed with love that was reciprocated in amplemeasure, whose intensity she is now able to fullyappreciate.

THE callousness of the medical system, the dailyindignities of being a person with disability in India, therole of family and friends and the healing power of love.It is a must read.

'No Looking Back'by Shivani Gupta

B O O K R E V I E W

Rupa Pages 272 Price: Rs 295Triumph over Tragedy...Reviewed by Shubhangi Vaidya

Courtesy: The Tribune


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gkbZ QaD'kfuax vkWfVLe dh ns[kHkkylkekU; faæLdksy

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Contiued from the December 2013 Issue of Autism Network

tquwu tquwu tquwu tquwu tquwu (obsession)

LisDVªe ij O;fDr;ksa dks vkerkSj ls ,d fo'ks"k oLrq ;kfo"k; ds lkFk tquwu ;k vkxzg lk gks tkrk gSA bl otg lsbls budh fo'ks"k :fp ds :i esa ns[kk tkrk gSA rks ;gpqukSrh dSls gS \ ljy gS vki vius cPps ds lkFk ?kj vkrsgSa] oks vki ls 30 fofHkUu phtksa ds ckjs esas ckr djrk gSA osvius fnu ds ckjs esa] vius nksLrksa ds ckjs esa vkSj viuslkekftd ukVd (social dramas) ds ckjs esa ckr djrk gSAexj tc vkidk cPpk gkbZ QaD'kfuax gS rks ,slk ugha gksxkrc vki flQZZ ,d gh pht++ ds ckjs esa lqusaxsA ;g budhckrphr ij 99 izfr'kr gkoh gksxkA vkidks ,d ghg¶rs@lIrkg ds Hkhrj lc irk py tk;sxk] ftruk Hkh osml fo"k; ds ckjs esa tkurs gksaxsA

os gj pht+ dk cfg"dkj djsaxs ml ,d :fp ds fy,Amudh :fp ,d 'kks ;k fQYe Hkh gks ldrh gS ftls osckj&ckj ns[ksaxsA pkgs dqN Hkh gks exj fQj Hkh vkidkscSBuk] eqLdqjkuk iM+sxk vkSj ckj&ckj mudh ckrksa dks lquukHkh gksxkA ;s dksbZ cqjh ckr ugha gS] os cgqr le>nkj gSa vkSjbl rjg oks [kqn dks vfHkO;Dr djus dh dksf'k'k djrs gSasasa]vkids lkeusA lapkj (communication) [kqyk j[kus dsfy, vki lqu ldrs gSa vkSj vki [kqn Hkh viuh dqN [kkst(research) djds muls ckaV (share) ldrs gSaA ;s,d fj'rk dk;e djus esa lgk;d gksxkA bldk /;ku j[ksafd vki mudks tks tkudkjh ns jgs gSa mls os fdlh izdkjdk O;k[;ku (lecture) u le>saA

egRoiw.kZ gS fd vki dksf'k'k djsa fd ,d ckrphr gks ftlesaos vkSj vki nksuksa gh iw.kZ rjhds ls Hkkx ysaA nks"kh u eglwldjsa (don't be offended) viuh :fp;ksa dks ckgj ykuk Hkh

muds fy, vius vki esa cgqr cM+k dk;Z gSA ftlesa vDljmUgsa fnDdr vkrh gSA

lapkj lapkj lapkj lapkj lapkj (commnication)

flQZ blfy, fd os gkbZ QaD'kfuax gSa] ;s ugha dgk tkldrk gS fd mUgsa lapkj esa dksbZ fnDdr dk lkeuk ughadjuk iM++sxkA ;s Hkh 'kjhj dh Hkk"kk ugha i<+ ldrs gSaA ;sO;fDr ls O;fDr is fuHkZj djrk gS fd oks fdruk le>ldrk gSA dbZ ckj buds psgjs ij dksbZ Hkko gh ugha mHkjrsgSa ;k vxj Hkko vkrs Hkh gS rks os cgqr de gksrs gSaA vDljmudh 'kjhj dh Hkk"kk vkSj os tks okLro esa eglwl dj jgs gSaoks vkil esa esy ugha [kkrk gSA

mnkgj.k ds fy, tc Hkh og fdlh my>u esa gksrk gS]fujk'k gSa ;k ijs'kku gS rc oks ga¡lrk gSA dbZ ckj os viuhLo;a dh vkokt dks fu;a=.k esa ugha dj ikrs] dHkh cgqrvfèkd ;k cgqr de gks tkrh gSA Loj vkSj Vksu ij dksbZfu;a=.k ugha gks ikrkA dqN Hkh muds okLrfod ewM+ ;kHkkoukvksa dks izfrfcac ugha djrk gSA os cgqr dBksj yxldrs gSasa] tc os cgqr vPNs ewM+ esa gSA nwljk eqn~nk gS fd ;sHkkoukvksa dks le>rs nwljh rjg ls gaS vkSj fn[kkrs nwljhrjg ls gSaA ;s dkj.k gks ldrk gS fd vki lkspsa fd osHkkoukghu gS tks fd lPpkbZ ls dgha nwj dh ckr gSAvkfVfLVd o;Ld (adult) ;k cPpksa dks vDlj 'kfCndfopkjkdks dh vfHkO;fDr dks le>us esa ijs'kkuh gksrh gSA

exj tSls tSls os cM+s gksrs gSa bls lh[k ysrs gSaA blls ;s Hkheryc gS] fd t:jr gS fd vki vius funsZ"k (instruc-

tions) eas Li"V gksA mnkgj.k tSls vkius dgk dkj ls mrjksrks oks mrj tk;sxk ;k dgk dh njoktk cUn djks rks oks


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cxSj mrjs gh dkj dk njoktk can dj ysxkA bldh txgvkidks dguk gS] ^^dkj ls uhps mrj dj njoktk can djksA**

rc og vkidh iwjh ckr le> dj] og iwjk dke djsxk] tSlkvkius mls funsZ’k fn;k gSA os vkidh ckr dks fQYVj ugha djldrs gSaA og ljy lh bZekunkj izfrfØ;k ns nsxk] tks Hkh mlsfunsZ'k feysxkA bldk eryCk gS fd os v'kkfCnd ladsr vkSj'kjhj dh Hkk"kk i<+us ;k le>us esa vleFkZ gSA ;gh dkj.k gSfd os ugha crk ikrs fd dksbZ >wB cksy jgk gS ;k /kks[kk nsjgk gS D;ksafd os le> ugha ikrs gSaA ;g Hkh lqj{kk dk fo"k;gSA vDlj laokn LFkkfir djus esa bUgsa eqf'dy gksrh gS vkSjesYVMkmWu ds dkj.k ;s [kqn d¨ laHkky ugha ikrs tks bUgsa xaHkhjladV dh rjQ ys tkrh gS] tSls fd bl nkSjku vekSf[kd gkstkukA esYVMkmu dk dkj.k lapkj Hkh gks ldrk gSA ;g fQjls ,d vkSj lqj{kk esa fpark dk fo"k; cu tkrk gSA

vk;q mi;qDr fgrksa ;k vHkko D;k gS (age appropriate

interests or lack there of)

dbZ gkbZ QaD'kfuax vkWfVfLVd vius Lo;a ds vk;q lewg lslacaf/kr ugha gksrs gSaA dbZ cPpksa dks cM+ksa ;k o;Ldksa dh dEiuh;k lkFk ilUn gksrk gSA vkSj dbZ yksxksaa dks vki ns[ksaxs fd osNksVs cPpksa dh fptksa esa [kq'k gksrs gSaA buesa ls dbZ dh :fpvHkh Hkh fdlh fo'ks"k izdkj ds f[kykSus [kjhnus esa gksrh gSAmudks viuh mez ls de ;k T;knk cM+s 'kks ns[kus ilUn gksldrs gSaA oks viuh mez ds fglkc ls :fp;ksa esa 'kk;n :fp ufn[kk;sA mnkgj.k& ,d 20 o"kZ ds O;fDr dks Hkh vki cgqr[kq'k ik ldrs gSa tc mUgsa f[kykSus ;k fdrkcsa feyrh gSa migkj(gift) ds :i esa] tks muds fy, cgqr euilan oLrq gSA

uhan uhan uhan uhan uhan (sleep)

dkQh O;fDr;ksa dks uhan esa ijs'kkuh gksrh gSA os jkr dks nsjrd tkxrs gSa vkSj vDlj dqN gh ?kaVksa esa mB tkrs gSaA ,dvU; vke leL;k gS fd os jkr ds chp esa dbZ ckj mBtk;saxsA vDlj i;kZIr uhan dh deh ds dkj.k esYVMkmWu dhlaHkkouk c<+ tkrh gS vkSj os vklkuh ls fujk'k gks tkrs gSaA;g Hkh ekrk firk dh fpUrk dk dkj.k gSA bldk ;s Hkheryc gks ldrk gS fd mudh uhan de gksA jkr esa tkxuk Hkh,d lqj{kk esa fpark dk fo"k; g]S mnkgj.k&tSls jkr esa osfu.kZ; djrs gSa fd dqN [kkuk idk;k tk;s vkSj 'kk;n oks dqN

idkus dh dksf'k'k djsa ftlds nkSjku mUgsa fQj ls uhan vkxbZ rks ;s fpark dk fo"k; cu tkrk gSA

vkgkj vkgkj vkgkj vkgkj vkgkj (diet)

LisDVªe ij dbZ O;fDr;ksa dk cgqr lhfer vkgkj gS vkSjmuds Hkkstu ds le; ds vklikl ,d fof'k"V fnup;kZ gksrhgSA os dsoy ,d fuf'pr fnu ij ,d fuf'pr i{k ds lkFkdqN [kk| inkFkZ ¼[kkuk½ [kk ldrs gSaA os dsoy ,d ;k nksizdkj dk gh [kk| inkFkZ gj Hkkstu ds fy, ;k gj le;[kkus ds fy, pkg ldrs gSaA vDlj bUgsa dksbZ elkyk ;kfepsZ ;k fdlh [kkl izdkj dk [kkuk ugha ilUn gks ldrkgSA mUgsa ,d uje vkgkj dh vko';drk gks ldrh gSALisDVªe ij O;fDr;ksa ds ,d cM+s fgLls ¼lHkh ugha½ ds lkFkikpu iz.kkyh eqn~nksa ds dkj.k mUgsa ,d fo'ks"k yl&eqDrdSflbu izh vkgkj ysus dh vko';drk gks ldrh gSA ysfdudbZ ckj vkWfVfLVd cPpksa dks MkbZV ;k fdlh fo'ks"k izdkjds [kk| inkFkksZa ij Mkyuk eqf'dy gksrk gSA vkSj blds fy,dkQh la?k"kZ djuk iM+ ldrk gSA D;ksafd oks vius Hkkstu esadksbZ Hkh u;s [kk| inkFkZ dks ysuk ilUn ugha djrs gSaA

vyxko vyxko vyxko vyxko vyxko (isolation)

vkWfVfLVd O;fDr ds ekrk firk vDlj [kqn dks dkQh vyxvkSj vdsyk eglwl djrs gSaA mUgsa irk ugha gksrk fd dgka¡ lsenn ekaxuh gSA os vDlj tgka¡ ls enn ds fy, igy pkgrsgSa vkSj tc ogka¡ ls mUgsa fujk'kk feyrh gS] rks os [kqn dksgrk'k eglwl djrs gSaA os eglwl djrs gSa fd blls mUgsavdsys gh >w>uk gSA LisDVªe ij O;fDr;ksa ds vDlj dksbZnksLr ugha gksrs] os ,d lkekftd vyxkookn dk lkeukdjrs gSaA dHkh vxj dksbZ nksLr gks Hkh rks oks T;knk nksLrhugha pkgrs gSaA dqN cPps nksLr pkgrs Hkh gSa ijUrq lkekftdvkSj lapkj ck/kkvksa ds dkj.k ugha cuk ikrs gSaA eq>s ;kn gSfd esjh ppsjh cgu ,fylk jksrh Fkh tc rd og lks u tk;sD;kasfd mls vius fy, ,d nksLr pkfg, Fkk ysfdu mllsnksLrh djus ds ctk;s] mls cgqr rax fd;k tkrk FkkA

rax djuk o et+kd mM+kuk rax djuk o et+kd mM+kuk rax djuk o et+kd mM+kuk rax djuk o et+kd mM+kuk rax djuk o et+kd mM+kuk (bullies)

rax djuk ;k et+kd cukuk ;s ,d fo'ks"k eqn~nk gS gekjscPpksa ds chpA vDlj fxjksg cukdj nwljs cPps budh udymrkjrs gSa ;k fQj rax djrs gSaA dbZ O;fDr cgqr laosnu'khy


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gksrs gSa vkSj gYdh cnek'kh Hkh vR;Ur gkfudkjd :i ls buij ekufld ncko cuk nsrh gSA et+kd cukuk vius vki esavFkd o Mjkus okyk gSA vDlj cPps vkSj o;Ld (adults) Hkhbruk Mj tkrs gSa fd os bl ckr dks fdlh ls Hkh ckaV(share) ugha ikrs fd mudk et+kd cuk;k tk jgk gS ;k fQjmUgsa rax fd;k tk jgk gSA

vkRe&mRrstd O;ogkjvkRe&mRrstd O;ogkjvkRe&mRrstd O;ogkjvkRe&mRrstd O;ogkjvkRe&mRrstd O;ogkj (stimming)

Stimming ,d NksVk 'kCn gS vkRe&mRrstd O;ogkj dsfy,A tks iz;ksx fd;k tkrk gS nksgjkus okys O;ogkj dhJa[kyk (series) ds fy, tSls&gkFk QM+QM+kuk] pckuk] cSafxx]flj ij ekjuk] isflax] jkSfdax] fdlh oLrq dks yxkrkj ns[kuk]pDdj [kkuk ;k yxkrkj ?kweuk vkfn] ;s dsoy dqN mnkgj.kgSaA ;s cPps djrs gSa tc os pje Hkkoukvksa ds le; ;k nkSjku(mRrstuk ij) vius vki dks fofu;fer djus esa enn djukpkgrs gSaA

os cgqr lkekU; yx jgk gS % Lohdfr vkSj n;k <wa<ukos cgqr lkekU; yx jgk gS % Lohdfr vkSj n;k <wa<ukos cgqr lkekU; yx jgk gS % Lohdfr vkSj n;k <wa<ukos cgqr lkekU; yx jgk gS % Lohdfr vkSj n;k <wa<ukos cgqr lkekU; yx jgk gS % Lohdfr vkSj n;k <wa<uk(They seem so normal finding acceptance and compassion)

Lohd`fr ,d cM+k la?k"kZ gS ekrk firk] ifjokj dslnL;ksa] vf/koDrkvksa (advocates)] djhch nksLrksa vkSj[kqn ds fy,A ;g le>us vkSj Lohdkjus ds fy, gj jkstyM+uk iM+rk gSA blds fy, dbZ dkj.k gSaA igyk dkj.kyksxksas dk ;g ekuuk gS fd (high functioning autism)

fcuk fdlh pqukSrh ds gSaA os ekurs gSa fd vlyh pqukSrhflQZ muds lkekftd :i ls vthc O;ogkj ;k 'kekZukgSA vU; vke leL;k gS fd yksx fo'okl gh ugha djsaxsfd budks Hkh vkWfVfLe gSA yksxksa dks os cgqr ekSf[kdyxrs gSaA os /kkj.kk cuk ysrs gSa vkSj d¨bZ cqjh fVIi.kh odkukQwlh djrs gSaA os ifjokjksa ds nSfud la?k’kZ dks le>ugha ikrsA lcls T;knk pkSdkus okyk gS fd yksx vDljdgsaxs fd og vkWfVfLVd ugha fn[krk gSA ;g blfy,D;ksafd 'kkjhfjd :i ls vkWfVfLVd cPps fcYdqy lkekU;fn[krs gSa vkSj ,d vkWfVfLVd O;fDr dks ns[kdj dksbZ ,dnels ugha dg ldrk fd ;g vkfVfLVd gS fo'ks"kr;k ,d gkbZQaD'kfuax vkWfVLVd O;fDr dksA

vf/kxe@lh[kuk vf/kxe@lh[kuk vf/kxe@lh[kuk vf/kxe@lh[kuk vf/kxe@lh[kuk (learning)

gj ,d vyx <ax ls lh[krk gSA dqN dks fn[kkdj funsZf'kr

djus dh t:jr gSA vU; cPpksa dks lh[kkus ds fy,midj.k ;k fp=ksa dh vko';drk gksrh gSA fl[kkus esaizcyu iz.kkyh (reinforcement) cgqr enn djrh gSAdbZ O;fDr;ksa dks fl[kkus ds fy, gesa vfrfjDr le; o/kS;Z dh cgqr t:jr gks ldrh gSA

izfrxeu izfrxeu izfrxeu izfrxeu izfrxeu (regression)

izfrxeu vDlj rhu lky dh mez ds ckn gkbZQaD'kfuax vkWfVfLe ds lkFk O;fDr esa nqYkZHk gksus dsfy, dgk x;k gS exj eq>s ;s ekeyk fHkUu yxkAizfrxeu okLro esa dqN gn rd lkekU; gSA dbZ dkj.kgSa tks ,d O;fDr dks okilh (regress) ;k okilh dsfy, (appear to regress) iznf'kZr djrs gSaA tSLks LokLF;esa ifjorZu vki izfrxeu ik;s rks ,d LokLF; tkapdjk ysa] ;gka dksbZ LokLF; ls tqM+k dkj.k Hkh gks ldrkgS 'kk;n ftldh tkap u gks ikb gks A cMs+ cnykotSls Ldwy dk laØe.k (transitioning) ;k dgha txgcnyuk ;k tkuk] chrs gq, iwjs o"kZ esa ftldk izfrxeuds dkj.k esa ;ksxnku gks ldrk gSA Vªkek (trauma) Hkhizfrxeu iSnk dj ldrk gSA izfrxeu dks bl rjgifjHkkf"kr ugha fd;k x;k fd oks T;knk vkfVfLVdyx jgk gSA ysfdu okLro esa ;gka u;s vfèkx`ghr ¼lh[ksgq,½ dkS'ky dk uqdlku gks tkrk gSA dqN gesa vf/kdvkfVfLVd yx ldrs gSa exj okLro esa os u;s dkS'kyizkIr dj pqds gSaA

;kn j[kus ds fy, ;kn j[kus ds fy, ;kn j[kus ds fy, ;kn j[kus ds fy, ;kn j[kus ds fy, (to remember)

;s t+:jh gS fd ge ;kn j[ksa fd vkWfVLe gj O;fDr dksvyx <ax ls izHkkfor djrk gSA dksbZ Hkh nks O;fDr viuhfdlh fnDdr esa leku ugha gksrs gSaA gj ,d dh xaHkhjrkvyx gksxhA ;s Hkh vkok';d gS fd ;kn j[kk tk;s fd cM+sgksus ds lkFk&lkFk mudh :fp;ksa esa vkSj laosnu'khyizfrfØ;kv a esa Hkh ifjorZu vkrk gSA tc vki ,d vkfVLeds O;fDr ls feys gSa rks vkius flQZ vkfVLe dk ,d ghizdkj ns[kk gSA vkidks nwljk ns[kus is irk pysxk fd gj,d vius vkies nwljs ls fdruk fHkUu gS vkSj vxj os gkbZQaD'kfuax gS rks muds dkedkt dk Lrj ,d fnu ls nwljsfnu rd esa cny ldrk gS vkSj dqN fnuksa esa os nwljksa dhrqyuk esa vf/kd dk;Z djrs fn[k ldrs gSaA


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I love people deeply and individually.I also let friends and family down pretty often.

IT is my unquenchable conviction that when I die, Ishould - through the proliferation of friendship and love -have left behind a fabric of relationships that becomesever wider and stronger, that can swell as a wave doesand move forward with a power that far exceeds any inputI may have made as an individual, and does not need meat all to drive its direction or to see to it that it reaches theshore.

IT is extremely important to me that autistic children andthose who love them should get the help andencouragement they need to live meaningfully on thisplanet. Many parents of autistic children have had somany struggles related to their children’s autism, that forthem, autism is defined solely by the things that they hate.Their vision is contorted by the fundraising efforts ofautism charities that perpetuate a bleak and pitiful pictureof suffering in order to solicit donations, dotted here andthere with inspirational stories of isolated heroes whohave ‘overcome’ autism to achieve something worthy ofa smile and a sentimental tear.

I want to give these parents hope; I want to help. Iunderstand what a meltdown is like, I know what it islike to be full of bruises, I know how horrible sensoryoverload feels, what it is like to be unable to talk or tomake eye contact; I know what it is like to feel left out,I know what it is like to vomit at the smell of certainfoods, I know the desperate feeling of beingmisunderstood. I have seen the pain of the other side, ofthe person who experiences a meltdown as an attack,who reads your lack of eye contact as disregard, whofeels manipulated by your insistence on masking theclutter on the computer screen, who cringes withembarrassment when you do something associated withthe bathroom in the presence of others, and who has theinconvenience of having to plan around your taste in foodin a society where communal participation is not merelyefficient, but also seen as a sign of love and respect.

I have also experienced the height and depth and breadthof the ecstasies of being autistic, and I live in gratitude forthese unsurpassable joys. My brother’s wife, who worksin the healthcare industry, told me that the reason why so

many people take recreational drugs is that the magnificentfeelings I experience simply from dancing and stimmingand looking at typography and designing classificationsystems, cannot be experienced naturally by most non-autistic people. The celebration within me, knowing thatI have friends, and the dissipation of that feeling throughoutmy body when they say something that is both extremelyastute and extremely funny — that full, systemic catalyticexciting realisation of their intelligence, and the potentialfuture that it creates for them in my mind — it is wonderful.When I look at a crane, when I look at cogs, my heart beatsdifferently. It costs me nothing to experience this intensepleasure — even the thoughts in my mind can bring it forthin part, without me even being there. When I read thesensitively accurate sentences composed by the patentattorney, describing the convolutions produced by thebaffles in a static mixer — something so difficult to explainin words — my mind breaks my body into tears at thepoetic beauty of his craft, and I am in awe. When a non-speaking autistic child comes to me, unsolicited, when aperson who is afraid of people bestows her trust in mewithout my insistence, when I work with people who arecompletely unlike me towards a common purpose, whenmy autistic friends, haphazardly, rise up to help non-autisticpeople who cannot get help or understanding from anyoneelse, and when my joy becomes the joy of others, whentheir joys are mine, I am so happy. I am so grateful.

I love being autistic. I want people to have this joy. I havefriends whose facial expressions mask their devotion frompeople who live in the mainstream of society, whosemanner of communication hides their autistic brilliancefrom those who are disabled by the disorder of beingunable to see it. I have the privilege of knowing them, ofrocking with them, of having access to their savant skillsand their helpful obsessions in practical applicationswhere I have no skills of my own.

MY world is filled with these surprises, these paradoxes,these exclusive experiences, these rare privileges. Whowould not want such a life?

Tania Melnyczuk is a self advocate with AspergersSyndrome. She lives in South Africa. Tania is the Director:Programme Design at ProjectManagement.co.za. Sheparticipates in conferences, conducts workshops on autismand actively advocates for the rights of people with autism.

My LifeTania Melnyczuk


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My son Drishaan secured a CGPA score of 10 in hisCBSE board exams in 2013. So what?! What is unusualabout it?! Every year lakhs of children appear for CBSEclass X board exams. The year 2012-2013, itself, saw86162 students accomplish this score, across the country.So what’s the big deal if Drishaan was one of them?Well, this is our story…….

WHEN the nurse handed me this soft, rosy pink, babywrapped in a clean crisp sheet the first time, he hadplaced his index finger on his chin, as if he was in deepthought...A thinker!! I told myself, he’ll surely make meproud one day. We named him Drishaan, the learnedShiva...a sage, a scholar.

DRISHAAN was an extremely happy and satisfied child.Once he was well fed, he rarely asked for my attention.Sure, there seemed to be some things that were a bitdifferent about him. For instance, he never crawled andhe did prefer to play with the TV remote and pens,instead of traditional toys. He could assemble anddissemble watches and mobiles in seconds. He wouldhold my hand and lead me to his blocks and get me tomake models for him.

WHEN other children his age were making their parentsecstatic by calling them ‘Papa’ or ‘Mama, Drishaanwas labelling everything ‘Kyku’. He was clumsy,frequently bumping into things and resisted physicalactivity, but had a strong inclination for music.

AT the age of two and a half, Drishaan wasmisdiagnosed as hearing impaired. A few months later,when his twin, Drishabh was diagnosed with autism,fortunately Drishaan was accompanying him. And, it wasthen that Drishaan received his accurate diagnosis, thatof being on the autism spectrum too, like his twin. Atthat time, this did come as a surprise to me, that the boyswere so very different from each other and yet happenedto be diagnosed with the same condition. But, I did nottake long to recover. Reading up on autism, I understoodwhy Drishaan was the way he was. He, like each one ofus was bestowed with his unique strengths andchallenges. I decided to focus on his assets, on hisstrengths. Drishaan has a very strong affinity for music.So, I started playing nursery rhymes in the background at

home. As a result he picked on humming tunes and thenstarted speaking new words. Throughout the day,describing them, but, never testing him. Word by word,his vocabulary blossomed and strengthened; and withinno time he was speaking in phrases and then sentences. Iread stories to him every night and from that, hedeveloped a desire to read. This also helped littleDrishaan vary his tone while speaking.

PRINT fascinated Drishaan and I realised that he couldread. He was hyperlexic, which meant that he could readvolumes, but, without comprehension. So, I worked onhis understanding ability by starting with easy passagesand then moved on to more complex ones. We did ourmath experientially in the environment; countingnumbers and learning various operations whilst eating,walking, climbing steps, swinging and so on. I usednature to teach him other concepts like that of sizes,colours, shapes and many more...We performedexperiments to understand the various phenomena inscience. I taught him to solve his own problems as andwhen they arose. I helped him ‘learn to learn’.

OUR aim was always, learning for the sake of learning -to gain information, to understand what was beingtaught, because learning in itself was so enjoyable.Learning was never forced and there were no unrealisticexpectations. Probably this was what generated a keeninterest in academics and Drishaan continued to be aneager participant to learn more and more. The aim, per sewas not to move to a higher class. And when Drishaandid get promoted every year to a higher class, that wasjust the bonus!

DRISHAAN was lucky to have accepting, loving andencouraging teachers. Year after year he excelled. I madehim aware of his uniqueness early and encouraged himto appreciate differences. I did not use one particularintervention approach to teach him, but instead used thebest of all the strategies I knew of.

DRISHAAN’S success was due to the contribution of apositive and healthy atmosphere and his strong learningbase. But, most importantly, this success would havebeen impossible without Drishaan’s own effort, hiswillingness and passion to learn.

CGPA Score of 10...a Cakewalk?Sudhanshu Grover


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Social skills training classesThis interactive programme, gives participants anopportunity to develop social skills for school andeveryday life, make friends, talk about feelings and arange of other socially appropriate skills.• Age of participants: 5-15 years.

• The Social Skills Training Classes commence from7thJuly 2014 and will be conducted for a period of 8 to10 weeks, on every Monday from 3 pm to 5 pm

Magic Beans Language ClassesThe Magic Beans Language classes offer acomprehensive and advanced language curriculum.Through this novel language programme, the childrenlearn different aspects of language. The programme isdivided into four modules: listening and memory;sentence formulation; reading comprehension andpragmatics,each module having four weekly sessionsfor two hours each. Participants can choose to enrol forone or more modules.• Age of participants: 5-15 years.• The Magic Beans Language Classes will be held onevery Tuesdays from 3 pm to 5 pm, from 7thJuly 2014.

Bubbles: The Social Communication ProgramChildren who are functionally more able and based inmainstream schools may find it difficult to follow groupinstructions, comply with daily routines of classroomslike taking out notebooks, copying from the blackboard,sitting during transitions, waiting for their turn in

classroom activities, asking for help and even providinganswers to questions they may know. Bubbles: TheSocial Communication Program has been devised toaddress such difficulties commonly faced by childrenwith autism in mainstream schools. This weeklyprogramme replicates classroom situations through funactivities and builds upon social skills necessary tointeract with peers and adults.• Age of participants: 4 years onwards

• Bubbles: The Social Communication Program,will runSaturdays, starting on 19 July 2014, for a period of 8 to10 weeks.

Leaps And BoundsLeaps and Bounds is a unique training program usingbest practices to help the adolescent and young adultwith autism be independent and move towards self-reliance in vital skill areas using learning modes like rolemodeling, to -do lists ,work systems and power points onthe skill being targeted. The program comprises of fourmodules: cooking, daily living skills, leisure time andsocial etiquette. Each module comprises of fourweekly sessions for two hours each.Participants canchoose to enroll for one or more modules.• Age of participants: 13 years and above• Leaps and Bounds will start from 10 July 2014 andwill be held Thursdays between 3 pm to 5 pm.

If an individual can be so motivated as to findacademics as enchanting as Drishaan does, it is easy tosecure a CGPA score of 10 in the Board exams.

Getting a CGPA score of 10 in the Board exams mayactually seem to be a cake walk.

And wouldn’t all our children, whether autistic orneurotypical, scale new heights, under similarcircumstances, given similar passions?

So really, what is so unusual about Drishaan’s CGPAscore of 10 in the Board exams?

Interactive Classes at the National Centre for Autism

Action for Autism is delighted to announce a range of interactive classesfor children and youngsters on the autism spectrum for the 2014-2015 academic session,

at the National Centre for Autism, Pocket 7 and 8, Jasola Vihar.

The classes will address different needs and skill areas, and, at all timeswill incorporate the element of fun to ensure that the learning process remains motivating.

For registration or any further inquiries,please contact Salini at 01140540991/ 01140540992

or email at [email protected]


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E L LH ENIP

QQQQQ Hi. My son, M, is 16 years old. He has always hadextremely irregular sleep patterns. However, for the pastcouple of years he virtually does not sleep at all in thenights. On some days he sleeps for just half an hour inthe day and that’s all. He seems to be fine. But, we arecompletely tired. We get no sleep in the nights, since Mkeeps us up. We keep telling him to go to sleep, but,instead of listening to us, he asks us to do different thingsfor him like give him a snack or to put the TV on and soon and if nothing else to just stay awake with him. Evenafter we do all of this, he does not sleep. Is thereanything we can do to change this?

AAAAA Thank you for writing in. One completely appreciateshow fatiguing this situation may be for you and yourfamily. There seem to be two issues here: one, M notsleeping at night; two, other members of the family beingdeprived of sleep due to M’s keeping them up.

To address the first: there are some individuals withautism who may have sleep disorders and there are alsothose who just seem to need less hours of sleep than thenon autistic population. From your email, it seems that Mmay fall into the latter category, since you mention thathe seems to function fine even with just half an hour ofsleep in a day. However, it may be worthwhile to seeksome medical advice on this. For instance, it seems thatsome individuals with autism may have a lack ofmelatonin (melatonin regulates sleep-wake cycle) andthis could disrupt brain systems and cause sleepdisorders. In such cases giving melatonin to theindividual may definitely help in regulating sleeppatterns.

In addition there are strategies that one could try out, tohelp M sleep better and / or be more settled in the nightwhich we discuss in the following.

Firstly, try to introduce a ‘bedtime routine’, in case Mdoes not already have a regular bedtime routine. Forinstance, if we decide that M needs to be in bed by 10.00pm, we could start setting up this ritual from as early as8.00 pm. The routine could start with a hot water bath(hot water baths often help calm the senses) and then hecould change into his ‘bed clothes’. If M does not havespecific bed clothes, you could set aside one or two setsof comfortable clothing that M wears only for going to

bed and at no other time, so that M associates thosegarments with ‘going to bed’. M could then have hisdinner. Since you have mentioned that M tends to ask forsnacks in the night, you could give M a slightly heavydinner, to make sure that he is not hungry in the middleof the night. After this, you could put on some soft music,perhaps instrumental music,without too much percussion.One of the things to avoid at this time would be watchingTV or sitting at a computer. Studies show that both theseactivities that involve looking at a lit screen suppressmelatonin and delays the onset of sleep.

This could also be time for some quiet interaction whenyou can chat with M about the day’s activities. Theconversation has to be a relaxed, casual discussion, andnot about testing his knowledge. Any kind of roughhousing or animated play too, is best avoided at this time.

Closer to bed time have M cross off the day on acalendar. If the date is 10 November, you could help Mput a cross on the ‘10’ in the calendar, to clearly signifythat the day is over. If M uses a visual schedule thenplace a ‘Bedtime’ / ‘Sleep’ card on the schedule that hecan take and match to his sleeping area. This would bethe last activity on the schedule, so after taking thebedtime/ sleep card the schedule gets finished. Thiswould again help M understand that all activities for theday are over. Once M has checked his schedule andheaded to, or been guided to his bed you could introducea closing ritual. Depending on his functional level, hecould read a story or you could read one out to him / singsome songs and/ or say a prayer with him. Whatever it is,it would be a good idea to keep your voice very soft.

Once this is over, say ‘good night’ to M, tell him that it istime to sleep and then just let him be. Should he get upagain, you could guide him back to bed, gently tellinghim ‘It’s time to sleep’.

The preceding is just an example of a bed time routine.You may want to tweak it to M’s interests and functionallevel, and what makes sense to M and the family.

Once a sleep routine has been introduced, follow thesame pattern of activities daily with no or minimalvariation so that for M there is predictability in theactivities that lead up to his bed time.


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It is possible that despite the bedtime routine Mcontinues to be up and is unable to sleep. Then the nextthing to do would be to help structure the night time forhim.

If there are any activities, for instance looking atmagazines, listening to music or doing puzzles, that Menjoys, you could add these to his schedule for the night.Of course, in that case ‘Bed time’ / ‘Sleep’ will not bethe last activity on the schedule. A ‘to do list’ or a minischedule could have pictures of the activities in thesequence in which they are to be done (eg first, listen tomusic; then, look at magazines and last, doing thepuzzles). Should you feel that M does indeed get hungryin the night, you could also set aside a small snack forhim to eat. Further, do make sure that your house iscompletely safe for M, ie the main door and balconydoors are locked, there is nothing fragile/breakablearound etc. Also if there is something that you wouldrather that M did not have access to, for instance, thekitchen or the TV, you could block the access to thesame, maybe by locking the kitchen or disconnecting theTV from the main switch or keeping the remotes away.This will ensure that M is safe as well asdoes not havepossibility of doing things during the night that youwould rather he did not.

Another strategy that may help would be to write a socialstory about bedtime. The social story can be a veryeffective tool to provide M with information of what isexpected of him. You could use pictures/ photographsrelevant to the situation to illustrate the story. The storywould describe the activities that lead up to bedtime andwhat happens at night. It could provide informationabout the options of activities that he has in the night,should he be unable to sleep, even as his parents sleep.

You could read this story out to M two to three times inthe course of the day, and also as one of the stories thatyou read to him at bed time.

Along with all of the above, do also try to ensure that Mgets ample physical exercise and that he does not napduring the day.

An extremely vital learning for M would be tounderstand that while it is okay to want to stay awake atnight, bed time is not a time to interact with others. Forall of us there are those nights when we are be unable tosleep. On such occasions we keep ourselves occupied byreading, watching the TV, listening to music or any otheractivity that may help us pass the night, and we also

know that we cannot wake up the rest of the family.This is what we will have to help M to learn.

From your mail we understand that when M asks you tostay awake with him, or to put on the TV or give him asnack, or when he is just moving around, you invariablyinteract with him. M has learnt that if he stays awake atnight he gets your attention, if he demands a snack youwill get up and give it to him, and so on. He has learnt thatwhen he is unable to sleep it is okay for him to wake youup, get attention from you, and get his demands met byyou. This is something that we need to help M unlearn.

So from now onwards, once you have wound up for theday and gone to bed, you will need to stop responding toM completely till it is morning. That would include nottelling him to go to back to sleep or not getting up to givehim something he wants. Instead, continue to keep lyingin your bed. This would also entail not looking at himwhen he makes his demands, or looking annoyed,exasperated, anxious or any of these. Pretend to sleep andif need be, cover yourself tightly with a sheet.

Initially, both you and M may find this very challenging,but, it is essential for you to be able to do this, for M tolearn that even though he is unable to sleep, it is okay foryou to continue sleeping. Initially you may face resistancefrom M; he might try to shake you to ‘wake’ you up, or pullthe cover off. Depending on how he reacts to unexpectedsituations, he might also vocalise or make other sounds ormovements. The important thing would be for you to stayconsistently non-responsive to his efforts to get you up.

Finally, any night when M has been more settled it will beimportant to reinforce him the following morning, with alot of attention / affection / activities or items that he likes;in short anything that hold a big appeal.

The whole process may take some time: for M to settleinto his bed time routine; for him to stop trying to makeyou get up and meet his demands; learn to keep himselfoccupied if he is unable to sleep and thereby you beingable to sleep; and hopefully for M to start sleeping betterand longer. However, if you are consistent in the strategiesthat you follow, and give M time to understand what isexpected from him, some of these issues that you arefacing will certainly get sorted out. All the best!

Q I am a diplomat with an 11-year-old autistic son.We are currently on a 2-year tour of duty in the US, butwill soon be sent overseas again and are looking forthe best countries for autism education.


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I read with interest your list of international autismorganizations. Thank you for compiling such a useful list!Do you have, or are you aware of, any reports that rankcountries by the quality of their autism education?

A You have asked an interesting question for which I amnot sure that there is an easy answer. To the best of ourknowledge, there is no study on the quality of autismeducation in countries.

There are several variables that I imagine you will have toconsider. For instance, is your child included in a regularclassroom or does he attend a special needs classroom? Ifhe is in the former, what kind of accommodations does herequire for him to be able to learn better and to keep hisschooling a positive experience? In addition, does herequire the additional support of backup services from agood therapist to bolster all that he is learning at school, aswell as teach those concepts for which he may needspecialised inputs? If this is the case, then you may needto look at a country where there is ample emphasis oninclusion, and alongside there are those add on servicesavailable either through the school itself or throughexternal facilities.

If your son is in a specialised set up, the variable toconsider there would be the particular interventionstrategy that he learns best with. Whilst there are servicesin some countries that use a combination of strategies thatare considered to be ‘best practices’ for autisminternationally, like the Structured Teaching, ABA, VBA,and tailor the programme to the specific strengths andneeds of the child in question, there may be others whichuse only one such intervention strategy.

Given all these factors, I am not sure if there is anycountry where every service is of the same standard. Thepercentage of good quality services in each country varies;some higher than others. Of course, there would becountries where the number of organisations/professionals providing services to individuals withautism may be greater, making those services more easilyaccessible. However, to reiterate, the quality of servicesmay again vary across organisations and / orprofessionals.

The key to ‘good’ education for individuals with autismmay often be understanding the condition, understandingthe unique ways in which children with autism think andlearn, accepting their autism as a vital, vibrant part of theirbeing and then approaching the intervention, the teachingof skills, and / or changing of behaviours, from that

paradigm of understanding and acceptance. What your sonwould need is a service that has a rock solid understandingof autism, provides students with structure and predictabilityand uses good behavioural principles in the teaching.

Hence you may need to widen your quest a bit more: inaddition to looking for a country which provides goodquality services to individuals with autism, you would alsoneed to delve into the quality of services that are providedby the organisations and professionals in question.

Unfortunately, there are no precise answers that we can giveto this particular question. But, we do wish you the very bestin your search.

Action For Autism is excited to launchthe pilot of its newest programme:

AAKAAR:Early InterventionSchool Readiness Programme, in July 2014.

Aakaar will run twice a year,beginning in January and July of each year.

Aakaar is a comprehensive early interventionprogramme for children with Autism Spectrum

Conditions upto seven years. The programme is childcentric, play based and family focused. The primary aim

of the programme is to help the child ‘learn to learn’by working on various school readiness skills

and prepare the child for a successful inclusion in themainstream classroom.

Each session will have a group of six childrenwho train together with their mothers (or parent

primarily involved in the child’s education) throughoutthe duration of the programme.

Aakaar aims at helping the mother understand theunique learning styles of the child with autism. This

enables her to both teach new skills and help generalizelearnt skills in the environment using the most

appropriate teaching strategies, as well as empowers herto act as an informed support for the child’s needs in the

mainstream classroom. in the mainstream classroom.

AAKAAR: Early InterventionSchool Readiness Programme

For registration or any further inquiries, pleasecontact Salini at 01140540991/ 01140540992or write an email to [email protected]


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Upcoming WorkshopsAt a Glance

Creating Opportunities for Work & Employment• Speaker: PreetiSiwach, Action For Autism

Thursday, 24 April 2014; 9:30 - 5:00 pm

Like everyone else people with autism too needappropriate work skills and opportunities in order to leadproductive and happy lives as adults. Some individualssucceed in open or semi-sheltered workplaces. But formost others, sheltered workplaces or vocational centresare ideal. Preparation for this ideally starts young, shouldbe underway in adolescence, but for someone who hasnot had the opportunity, can also begin in adulthoodregardless of the age. As a parent or professionalworking with people with autism, the workshop willfocus on essential work skills; how to teach them as wellas basic pointers on how to set up and run a vocationaltraining centre employing individuals with autism andother developmental disabilities.

Building Bridges through Sensory Integration• Speaker: Dr Anjali Joshi, Director Research andTraining, Ummeed Child Development Centre, Mumbai

Friday, 25 April 2014; 9:00 am- 5:00 pm

Living and working with children with Autism and/orexhibiting Sensory Processing Disorders can berewarding, but it’s also very challenging! It is seen thatwhat people need the most help with is learning how tomanage the apparent unmanageable behaviors that get inthe way of learning, progress and relationships. Thesessions will focus on planning and executing flexibleand effective curriculum and learning environments.

Including the Child with Autism in the MainstreamClassroom• Speaker: Indrani Basu, Founder & Director, AutismSociety West Bengal, Kolkata

Saturday, 26 April 2014; 9:00 am- 6:00 pm

The Indian law mandates that schools cannot refuseadmission to students with autism. In reality parents arestruggling to get admission for their child with autism.One of the chief reasons is that the schools still feel

inadequately prepared to meet the needs of people withautism. This workshop will focus on fine nuances of thedifficulties that the child with ASD faces in theclassroom and the accommodations required to facilitatelearning. The workshop will be useful for professionalsto facilitate an inclusive learning environment and forparents as they prepare their young ones formainstreaming.

Empowering my Child: A Training for Parents• Speaker: Action For Autism Team

Thursday 3 July to Saturday 5 July 2014;9:00 am – 5:00 pm

Whether you are a parent of a newly diagnosed child, orwhether you are a more seasoned parent, the bottom linein helping your children learn is to understand autismbeyond theoretical explanations. Here is an opportunitythat will help you understand autism and your childbetter, and empower you to help your child learn moreeffectively. Professionals wishing to understand theworld of autism from the child’sperspective and exploreapproaches to enjoyable learning are also welcome toregister.

For all inquiries, please contact:

Aditi Rao, Trainings CoordinatorEmail: [email protected]: + 91 99906 72647Tel: +91 11 4054 0991-92

“ The difference between high-functioningand low-functioning is that

high-functioning means your deficits are ignored, and low-functioning means

your assets are ignored”

- Laura Tisoncik -(from the 'Circle of Moms' blog)

~~


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The Editor, Autism Network,Pocket 7&8, Jasola Vihar, New Delhi - 110025

B O O K P O S T

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Published & printed by Merry Baruaon behalf of Action for Autism (AFA) from

Pocket 7&8, Jasola Vihar, New Delhi - 110025

Tel: 91 11 40540991, 91 11 65347422Email: [email protected]

Website: http://www.autism-india.org

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(RNI No. DELBIL/ 2006/ 23172DELBIL/ 2006/ 23172DELBIL/ 2006/ 23172DELBIL/ 2006/ 23172DELBIL/ 2006/ 23172)

(...cont from Pg One)

the bill should be completely scrapped and a new onedrafted, and those who felt that it was not a perfectbill, but would assure new disabilities some rights.

We believe that with some amendments, the bill must bepassed. Before being sent to a Parliamentary StandingCommittee, many non-negotiable amendmentssuggested by the disability community, have alreadybeen incorporated. We believe the way to go is innegotiating with the government to strengthen the billfurther and ensure the Right of Persons with DisabilitiesBill is an Act within the coming year.

The reality is that disability is not a homogenousconstruct. There is extreme heterogeneity within eachdisability group, and more so across different disabilitygroups. Yet during disability discourse, unfortunately,the voices of those who need support to articulate theirwants and needs get side lined, such as those withintellectual impairment and autism.

The other important point to keep in mind is that therecan never be a perfect law. If we wait for the perfect lawto come about, we could wait forever. Those disabilitiesthat already have various entitlements to educationand jobs and travel etc, can say with great vigour thatthey would rather not have a new law if it were not aperfect piece of legislation.

But is someone listening to the voices of the Kaustav’sand Gambhir’s of the country?

AFA has entered the 20th year of its official existence,though unofficially we are a 23 year old. Two decades isa short time in the life of an organisation. We haveachieved a significant amount in this short span andfought many successful battles. But there are manybattles yet to be fought: it’s just that the battles arenow different, and many times more complex. But likeexperienced troopers we gamely marshal our forces,support our children with schedules, organisers, socialstories, reinforcers, visuals, etc, sort out our often-difficult family lives, benignly ignore judgementalneighbours, service people, schools, etc that are quick tocritique our parenting, and prepare for the next battle.

*Names changed

Documents

C O N T E N T S 2014 Vol. 9 Issue 1.pdf · AUTISM NETWORK: VOL 9 ISSUE 1~ APRIL 2014 APRIL 2014 VOL 9 ISSUE 1 C O N T E N T S Action For Autism is a registered, non-profit, national