C O N T E N T S Page One The Self in Autism Token Economy Alternative Therapies for Autism cont. (Hindi) Helpline Upcoming Workshops at a Glance

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2 AUGUST 2012 VOL 7 ISSUE 2 Action For Autism is registered, non-profit, ntionl prent orgnistion. Autism Network is published by Action For Autism to provide informtion on eduction, therpy, cre, nd to provide interction for fmilies nd professionls cross the country. Autism Network is forum for expressing diverse opinions. Action For Autism does not hold itself responsible for opinions expressed by individul writers. Publiction of ny informtion does not men support of Action For Autism. Autism Network does not ccept dvertisements. Expenses re met through memberships, dontions nd sponsorships, from our reders, friends nd well wishers. This journl is for free distribution. INFORMATION For informtion on receiving the Autism Network write to: Pocket 7&8, Jsol Vihr, Behind Si Niketn, Opp. Gte 6 Sector 8, SFS Flts, New Delhi Tel: /2 YOUR CONTRIBUTIONS Do you hve ny comments, suggestions to offer? Informtion nd experience to shre? We look forwrd to our reders' prticiption. Send letters, rticles, illustrtions to: The Editor, Autism Network t the bove given ddress or E-mil: ctionforutism@gmil.com Editor: Merry Bru Editoril Bord: Indrni Bsu, Indu Chswl, Nidhi Singhl, Ann Vrvkul, Design & Production: Bindu Bdshh, Sudhir Pilli In referring to the child with utism, Autism Network often uses he, him nd his, not s prejudice ginst the girl child with utism, but for resons of simplicity nd becuse the vst mjority of children with utism re mle. However, mny rticles lso use she, her, nd hers. Website: Helpline Emil: helpline.f@gmil.com Cover Illustrtion Spidermn' by Prnv Gupt, 8th Stndrd, Springdles School. Dhl Kun, Delhi WISHLIST! Aprtment/ House/ Residence for people with utism IPODS IPADS for children to communicte Tblets for teching cognitive/socil skills Computer/Video gmes, X Box Connect Colour coded keybords Gymblls Music systems (CD/MP3 plyers) Adpted mouse Hed phones Bord gmes Microwve for cooking skills Wshing Mchine for independent skills trining unit Computers tht cn support grphics Digitl Video Cmer to record children's progress Lptop & LCD projector for prent trinings Trmpoline Light & sound mking toys Lego: lrge & smll blocks Sttionery: Cobr/ Box files for student records Fevicol Jrs Pper/ plstic file covers for student schedules Mrkers, pencils, pens, coloured sheets, chrt pper Reusble/ fresh A4 pper Hndmde pper for rtwork Glossy mgzines Sticky bck Velcro Reusble visiting crds Empty shoe boxes Acrylic pints Volunteers : For yog, rt & crft, music, Respite cre If you wnt to help, write to AFA or cll: AFA: /2 Reet: C O N T E N T S Pge One The Self in Autism Token Economy Alterntive Therpies for Autism cont. (Hindi) Helpline Upcoming Workshops t Glnce

3 PAGE ONE On 30 June lst yer the committee chired by Dr Sudh Kul to drft new lw to replce the Persons with Disbilities Act submitted the finl drft of the Rights of Persons with Disbilities Bill (RPDB) to the Ministry. There is still no informtion s to when the lw will finlly be plced before Prliment. In the mentime, hlf-wy through nd the yer is turning out to be one of cutious optimism. In Mrch this yer cme the nnouncement of Deprtment of Disbility Affirs (DDA) under the Ministry of Socil Justice nd Empowerment. Within two months Centrl Government notifiction nnounced the cretion of the DDA, under the inititive of the Minister Shri Mukul Wsnik. And couple of dys go cme the nnouncement of the ppointment of Sm Stuti Kckr s Secretry of the division. The fulfilling of the commitment towrds seprte ministry for disbility hs been long overdue; this quick succession of events is perhps sign of better times. We hope this positive development which hs come bout with the efforts of numerous ctivist groups in the country working t vrious levels, will go beyond the superficil nd t lst give our community voice nd presence. heterogenous. And perhps no disbility highlights this heterogeneity s shrply s Autism does. In this issue we crry n rticle tht ddresses criticl re, n re in which persons with Autism pper to develop mrkedly differently from the non-utistic. Professionls, the wider disbility sector, nd even prents themselves often do not fthom the pervsive nture of Autism. For instnce, the generl perception is tht ll persons with Autism re self bsorbed nd tuned to their own selves. Wheres the relity is tht people with Autism hve difficulty in reflecting upon their own ctions, thoughts nd emotions, which directly impct the wy they lern, nd wht they lern. They often hve reduced sense of self, which often impcts on their bility to lern in group s well s lern from the liner non-experientil mnner in which teching is conducted in our school clssrooms. Most experts in the disbility sector fil to grsp this, nd therefore cnnot pprecite tht inclusive clssrooms often end up being plces where persons with Autism re the most excluded. And tht children with Autism who re enbled to led inclusive dult lives often do so due to the specil needs eduction tht they receive outside so-clled inclusive clssrooms. With the setting up of the DDA it is time tht the disbility community try nd ddresses differences within our rnks, difficult though it my seem t times. Much of these differences re driven by perceptions of disbility. These perceptions re often bsed on focus of wht one experiences personlly, nd wht one is exposed to. This in turn contributes to the mistken belief in the homogeneity of disbility experiences. Much of the discourse on disbility, divisive or otherwise, is driven by this unitry view of disbility. The relity is tht disbility is extremely Recent Enggements Even s we go to press, experts in Autism re still locked over the chnging definition of Autism. The proposed DSM-V revisions hve sprked debte over In April 2012, Merry Bru Director AFA ws invited to present on Autism in Indi t the Autism Speks GAPH First Annul Conference of the Advoccy Ledership Network in New York. She lter spoke on Eduction for Persons with Specil Needs in Interntionl Settings t the College t Old Westbury, SUNY. In My 2012, Nidhi Singhl Director Reserch nd Trinings t AFA mde presenttion on Ethicl Considertions in Conducting Reserch in Low Resource Countries t the Interntionl Meeting For Autism Reserch Conference in Toronto. In August 2012, Merry Bru ws invited to spek on Empowering Mothers to Increse Rech in Low Resourced Settings s well s on Perspectives in Including Children with Autism in Minstrem Clssrooms t the ICre4Autism Interntionl Autism Conference in Jeruslem. the inclusion of ll the PDDs under the hed of Autism Spectrum Disorders, nd the possibility of those on the ble end of the spectrum flling through the crcks nd losing ccess to resources nd services tht they need. Whether one shres this fer or not, this concern further illustrtes the complexity of condition tht is often ttempted to be glossed over by homogeniztion of the disbility prdigm. 1

4 The Self in Autism Rchel Brezis Historiclly, reserchers nd clinicins ssumed tht since persons with utism re often oblivious to their surroundings, they must be deeply self-bsorbed. In fct, when Knner published his first description of children with utism, he picked the term utism becuse it is derived from the Greek word utos, mening self. For mny decdes, reserchers focused on these children s difficulties in interpersonl reltions, theory of mind, nd repetitive behviors without questioning the initil ssumptions regrding the self in utism. Recent studies, however, re beginning to show tht persons with utism in fct hve vrious impirments in their sense of self nd tht these in turn cn hve pervsive consequences in their dily lives. In wht wy is the self in utism different? How does it ffect their bility to remember, to pln, nd to empthize? And wht cn we do to help? IN this piece, I ll begin by reviewing the different behviorl wys in which the self in utism my mnifest differently, continue by looking t some of the different brin structures tht would underlie these differences, nd conclude with some prcticl recommendtions for helping children nd dults with utism develop stronger nd clerer sense of self. Wht is the self? The self hs been centrl topic of investigtion for mny centuries, cross different cultures nd religions nd different definitions of the self bound. On n intuitive level, the self refers to the unitry core we ll possess, our essentil being which mkes us distinct from others. Willim Jmes, one of the founders of psychology, mde n importnt distinction between the self tht simply cts nd experiences (the I ) nd the self tht perceives the cting self (the me ). The I is the more bsic nd implicit lyer of the self, including n intuitive wreness of our body in spce, our self in reltion to others. The me is more explicit, reflexive lyer tht emerges lter in development, nd includes our beliefs bout ourselves, nd n understnding tht our personl identity hs continuity over time. In wht wys cn n utistic person s self be different? Ulrich Neisser, socil psychologist, expnded on Jmes notion of the I nd the me, nd divided the self into five forms of self-wreness. As reserch on the self in utism is unfolding, it is useful to follow Neisser s ctegories to better understnd where impirments in self-wreness emerge in utism 1. THE first two ctegories in Neisser s model re more implicit forms of self-wreness, corresponding to Jmes I : ) The ecologicl self The ecologicl self is our bility to perceive of our own body nd the effects of its ctions in spce: I m the person here in this plce, engged in this prticulr ctivity. Hving n ecologicl self mens recognizing the boundries of my body nd distinguishing between my body, other bodies, nd the environment. At rudimentry level, newborn bbies hve the bility to distinguish between their own nd others bodies: if you tke bby s hnd nd touch it to their cheek, the bby would be less likely to turn nd suck thn if you touched your own hnd to their cheek, s if the bby knows whose hnd ws touching them. ANOTHER importnt spect of the ecologicl self is our sense of gency, our intuitive bility to distinguish between chnges mde by the environment, nd chnges tht we ourselves hve mde. On broder level, it involves perceiving ourselves s the center of control for our own ctions, nd recognizing our responsibility for prticulr chnges in the environment. Newborns cn lern to suck on pcifier t specific rte in order to see or her prticulr sound, such s their mothers voice indicting tht they cn control their behvior to chnge the environment. Do persons with utism hve n ecologicl sense of self? It seems tht t bsic level, children with utism re 1 The following discussion is bsed on Lind nd Bowler (2008) Episodic memory nd utonoetic consciousness in utistic spectrum disorders: The roles of self-wreness, representtionl bilities nd temporl cognition. In: D. Bowler nd J. Boucher (eds.) Memory in Autism. Cmbridge: Cmbridge University Press. pp

5 cpble of moving their bodies in reltion to the physicl environment without much difficulty. A recent study of high-functioning dults with utism by Willims nd Hppe 2 hs lso demonstrted tht persons with utism re cpble of identifying which of number of moving dots on screen ws being moved by their own hnd on the computer s mouse mening they hve n intuitive sense of gency. HOWEVER, it is uncler whether this bility would extend to persons with low-functioning utism, nd whether more subtle impirments in the ecologicl self would pper. For instnce, we know tht compred to the non-utistic, persons with utism hve mny more sensory issues such s n over-sensitivity or undersensitivity to sounds, lights, touch nd het. As Temple Grndin recounts: My hering is like hving sound mplifier set on mximum loudness I hve two choices: (1) I turn my ers on nd get deluged with sound, or (2) shut my ers off I cn t modulte incoming uditory stimultion. Persons with utism my be highly irritted by the touch of new grment, but unffected by pinful tempertures or pricks. Furthermore, mny persons with utism hve difficulties with git, blnce nd coordintion, suggesting tht they hve some impirments in negotiting their physicl environment. Given these differences in sensory nd motor functioning, it is possible tht rther thn perceiving their bodies s bounded nd controllble, they would insted perceive of the reltion between their bodies nd the world s much more permeble nd blurred. Such differences in perceptul experiences my hve fundmentl consequences for the wy in which persons with utism perceive their body in reltion to their environment, nd their selves in reltion to others. b) The interpersonl self The interpersonl self is our understnding of ourselves in reltion to others in our socil environment: I m the person who is engged, here, in this prticulr humn interchnge. In typicl development, interpersonl selfwreness is cquired through erly socil interction, imittion, turn-tking nd so on. For instnce, typicl infnts engge in non-verbl converstions with their cregivers, tht involve turn-tking nd imittion of vocl, fcil nd gesturl expressions. When the interction is not responsive nd interctive (for instnce, if n infnt is observing video-recording of their mother), the infnt loses interest nd becomes distressed. These behviors show tht typicl infnts hve cler wreness of themselves in reltion to others. By prticipting in these interctions, nd observing the interlocutor s rections to their expressive ctions, they begin to cquire sense of gency in directing socil ctions. IN utism, mny of these socil behviors re compromised from erly development, nd thus children with utism hve difficulty cquiring n interpersonl self-wreness. Some children with utism show indifference to other people, treting them s objects rther thn s beings with whom they cn interct. Even in high-functioning children, converstions tend to be stereotyped nd lcking in reciprocity. For exmple, Therese Joliffe, n dult with high-functioning utism recounts: When I ws very young I cn remember tht speech seemed to be of no more significnce thn ny other sound It ws ges before I relized tht people speking might be demnding my ttention Without the erly bility to engge in socil interction, persons with utism will hve limited sense of interpersonl self; nd this, in turn, will mke it difficult for them to cquire more sophisticted mens of interction nd interpersonl understnding. THE following 3 ctegories of the self s described by Neisser pper lter in development, nd pertin to our more explicit self-wreness (the me ): c) The privte self The privte self emerges when we begin to become wre tht some of our experiences re not directly shred with other people: I m, in principle, the only person who cn feel this unique nd prticulr feeling. The privte self is directly relted to theory of mind: between the ges of 3 to 5, typiclly developing children begin to understnd tht their desires, intentions nd beliefs re different from others, tht other people hve different mind. At the sme time, they begin to reflect on their own experiences, understnding tht some of these re privte, nd cnnot be perceived by others. With time, they become wre not just of hving n experience, but tht they re hving it. 2 Willims nd Hppe (2009) Pre-Conceptul Aspects of Self-Awreness in Autism Spectrum Disorder: The Cse of Action- Monitoring Journl of Autism nd Developmentl Disorders. pp s39:

6 AS we know, persons with utism hve difficulty with theory of mind, nd thus, they re lso significntly impired in understnding their own mentl sttes. For instnce, persons with utism hve difficulty recognizing their own emotions even when they exhibit n pproprite physiologicl response to fer or joy, they hve difficulty rticulting their feeling. 3 WHAT do persons with utism think bout? An interesting glimpse into the inner world of persons with utism ws provided by Frncesc Hppe nd Ut Frith, who sked severl dults with Asperger s t different points in their dys to puse nd report on their thoughts. The first indiction of reduced sense of self ws provided in tht most dults interviewed could not comprehend the tsk reporting on their present ction (e.g., unscrewing bottle), rther thn the mentl picture of their current experience. Tht sid, two of the dults interviewed were cpble of reporting their thoughts fter severl dys. The following re exmples of their thoughts: Robert ws on the trin to London nd hd just seen from the trin window suspicious looking cr prked or bndoned on the rod ner the trck. He ws trying to memorize where the cr ws so tht he could come bck nd find it when he got off the trin, in order to get its registrtion number (which he did in fct lter succeed in doing). The imge of the cr Robert ws seeing ws in ccurte color, just behind low wll, with some grges in the bckground behind it; the prts of the cr obscured by the wll were not seen. Nelson ws wtching TV nture documentry bout wter botmen [ type of insect] on pond. He ws seeing on the screen how the insects move, from left to right cross the screen, nd he ws lso picturising clssroom scene from when he ws younger, when he hd wtched similr TV progrmme. In the imge, he could see the TV, group of children sitting in front of it on the floor, nd the techer stnding behind the children. The perspective ws from the bck of the techer, over her shoulder, pst the group of children, towrds the TV. The imge ws in color nd movement: he could see the brown of the wter nd the color of the clothing the techer nd children were wering. WHAT is striking bout these exmples, beyond the gret focus on detils nd visul imgery, is the fct tht they do not report on their emotions nd bodily senstions (this is true of other thought smples surveyed s well). Further, Robert s ccount does not provide ny interpersonl reflection on other humns; nd while in Nelson s scene, he reclls the memory of his techer nd clssmtes, those re quickly glossed over in fvor of the engrossing imge on the TV. THESE thought smples, s well s more clculted experiments, suggest tht the privte self of persons with utism my be fundmentlly ltered from tht of typiclly developing persons. We will return to these experiences lter in this rticle, when exmining the possible brin bses underlying the experience of self in utism. d) The conceptul self Conceptul self-wreness rises when the self becomes the object, rther thn merely the cting subject of thought. In other words, we begin to reflect on our own behviors, nd begin to develop set of beliefs bout ourselves. In typicl development, conceptul self-wreness emerges only in the second yer of life nd is reflected in the development of self-conscious emotions (such s embrrssment nd pride), personl pronoun use, nd explicit beliefs bout the self. One of the wys in which psychologists hve exmined the emergence of conceptul self-wreness is through the Mirror Self-Recognition tsk. As the child is plying with n dult, the dult covertly smers their fce with color, s they re pretending to wipe the child s fce. The experimenters then observe the child s rection to their own reflection. At 18 months, toddlers typiclly touch the color mrk on their fce indicting tht they hve n emerging self-concept. At 24 months, toddlers lso begin to show blushing, shy smiling nd gze version which re indictive of the emergence of self-conscious emotions such s embrrssment. WHEN children with utism re given the Mirror Self- Recognition tsk they typiclly do touch their hnd to the mrk on their fce t the pproprite mentl ge indicting tht they hve bsic self-concept of their 3 It is interesting to note tht different psychitric disorders, such s depression, re chrcterized by n over-rumintion on the privte self nd its experiences. 4

7 physicl ppernce. However, children with utism don t show ny of the self-conscious emotions tht ccompny mirror self-recognition in typicl toddlers. More brodly, while persons with utism hve cler experience of bsic emotions such s joy, fer, nger nd sdness, they hve difficulty experiencing nd expressing self-conscious emotions such s pride nd embrrssment, which require n understnding of how others perceive you. ANOTHER mrker of the conceptul self in typicl development is the use of personl pronouns, such s I nd me. The unique property of personl pronouns is tht their mening shifts ccording to who is speking: e.g., prents ddressing their child lwys sy you, but typicl toddlers lern to cll themselves me. Thus, their proper cquisition indictes tht the child hs developed self-concept, nd tht he or she cn represent themselves nd others s distinct individuls. In utism, pronoun reversl is very common, nd even serves s dignostic mrker for verbl individuls. For instnce, rther thn sying I wnt ice-crem, Ansh might sy you wnt ice-crem or Ansh wnts ice-crem. Ansh s confusion indictes tht he hs difficulty perceiving of himself in reltion to others his self-concept remins fixed in others wys of ddressing him, rther thn becoming personl I or me. IMPORTANTLY, the conceptul self continues to develop over time. As we grow, we grdully cquire set of beliefs bout our self, our personl chrcteristics, fetures nd trits. As children, our self-concept consists minly of beliefs bout physicl trits nd bilities (e.g., I hve brown hir ; I cn skip ). Lter, our self-concept extends to psychologicl nd socil trits tht cn be more interpersonl in nture (e.g., I m shy ; I hve lots of friends ). IN my own reserch, I sked children nd dolescents with utism in Los Angeles how they would describe themselves. Mny of the children hd difficulty nswering the question, sying I don t know, I don t understnd, or simply chnging the topic. Those who did describe themselves, used more physicl chrcteristics thn their typiclly developing peers, such s: I m from Mexico, I m hndsome nd chrming, I hve mouth, nd nose, nd rms nd legs. In contrst, typiclly developing children nd dolescents gve more psychologicl descriptions of themselves, such s: I try to be friendly, I m good listener, Sometimes I get md. As we cn see, while typicl children nd dolescents spontneously describe their self in emotionl nd socil terms, dolescents & children with utism focus on their physicl or externl trits. e) The temporlly extended self The finl lyer in Neisser s ctegoriztion of the self involves our wreness tht the self continues to exist through time: I m the person who hd certin specific experiences, who regulrly engges in certin specific nd fmilir routines. One simple wy of exmining this temporl wreness is through the Delyed Self- Recognition tsk: fter the experimenter covertly colors child s fce, the child nd the experimenter wtch video of the interction. While typicl children utomticlly rech their hnd to their fces, recognizing tht the child in the video nd themselves re the sme, utistic children need to be prompted to recognize this identity. This difficulty in recognizing their self s continuous in time my hve fundmentl consequences for memory nd future plnning, s we shll see below. TO summrize our discussion thus fr, persons with utism hve impirments t vrious levels of selfwreness: beginning with the most bsic, physicl sense of their body, nd continuing on to more bstrct wreness of their self s distinct entity with feelings nd beliefs tht hs continuity over time. Not surprisingly, persons with utism hve the most difficulty with interpersonl spects of the self: viewing themselves through others eyes, nd understnding tht their own emotions nd beliefs re not visible to others. THUS we see tht rther thn being self-bsorbed nd selffocused, s erly observers of utism hd ssumed, we now know tht persons with utism hve s much difficulty understnding themselves s understnding others. Why do people with utism hve reduced sense of self? At the biologicl level, severl brin-imging (MRI) studies of persons with utism hve begun to uncover the possible resons for reduced self-wreness. First, persons with utism hve reduced connectivity between the limbic regions which re responsible for emotionl response nd the frontl cortex which is where selfprocessing occurs. This my explin why persons with utism my hve physicl emotionl response, but hve difficulty rticulting their emotion, nd remembering the emotionl experience lter on. BOTH the frontl cortex nd the limbic regions re prt of lrger network clled the defult network, which 5

8 overlps with self- nd other-processing. When typiclly developing persons nd re not given ny prticulr instructions, their brins utomticlly ctivte these regions of the defult network, suggesting tht when our minds re left to wnder, we typiclly begin to think bout ourselves nd others. Individuls with utism, however, did not ctivte this defult network utomticlly only when told to do so. This reltes to the thought smples provided by Frith nd Hppe, bove: even when told to explicitly reflect on their thoughts, dults with utism focused on visul imgery of objects, rther thn persons nd emotions. A further mnifesttion of this phenomenon is tht persons with utism pprently do not hve s mny drems s typiclly developing persons (s mnifest by Rpid-Eye Movement, or REM, during sleep, nd self-report t wke-up). Thus, it seems tht persons with utism do not spontneously reflect bout themselves nd others when their mind wnders. Since utism is neurobiologicl condition tht begins t birth, the fct tht children with utism do not spontneously reflect bout themselves in reltion to others when their mind wnders, my men tht they will lck the experientil glue tht gives us our experience of self. Wht re the consequences of reduced self-wreness? Hving sense of self is directly relted to three primry humn bilities: our bility to remember events in our pst, our bility to pln our ctions in the future, nd our bility to empthize with others. MULTIPLE studies of memory in utism hve shown tht while persons with utism hve good memory for semntic fcts, such s word lists nd trin tbles, they hve difficulty remembering their own events. Why is tht? Perhps it is becuse children with utism don t hve rich, elborted sense of self, events in the world tht occur to them wouldn t necessrily be worthy of remembering. In one experiment, reserchers took group of utistic nd non-utistic children on wlk. When they returned, they sked the kids wht they remembered. The typicl kids remembered more ctions tht they hd performed (e.g., I petted the horse, I plced letter in the milbox), thn ctions tht the other kids hd performed. But children with utism remembered just s mny ctions tht they hd performed s others hd performed. It ws s though their self simply wsn t s slient, nd events tht hppened to them didn t get tgged with tht specil personl connection. In my own reserch on memory in utism, I found tht high-functioning children nd dolescents with utism would often report the fcts nd physicl objects present t events they hd experienced, but not the emotionl or socil spects of the sitution. For exmple, Jordn, n 11-yer-old boy, told me: On my lst birthdy I went to movie. It ws nice. Then I went to resturnt nd te some burgers. They hd lettuce nd tomto inside. IN contrst, when tlking bout his fvorite fictionl chrcter, Meggie, Jordn ws cpble of giving more elborte descriptions of his mentl sttes: When Meggie ws little he didn t know his mom... He wnted to see his fther, but he didn t know where he ws. IN wy, it ws esier for these children with utism to relte to fictionl chrcter, whose story is pre-fixed, thn to construct their own nrrtive bout themselves. Using their bility to relte to fictionl chrcters, we my help high-functioning persons with utism better understnd themselves. REMEMBERING who you re nd wht you ve done in the pst, hs direct effect on your bility to pln hed. We know tht persons with utism hve significnt difficulties in decision-mking nd future plnning. For instnce, one high-functioning dult with utism told me tht every time his mother would sk him wht he wnts for dinner, he d role dice to decide. If he hd hd stronger memory of liking dl mkhni in the pst, or perhps even n identity tht he s sg pneer kind of guy, it would be esier for him to decide wht he wnts to et tonight. FINALLY, s mentioned bove, reduced sense of self would mke it difficult for person with utism to understnd others. If you don t hve good memory for how it felt when you were hppy, sd, or in pin, it would be difficult for you to show empthy towrds others in the sme stte. In ddition, if you don t hve cler understnding tht your emotions re different from others it would be difficult for you to conceive of someone being sd when t tht moment you hppen to be hppy. Prents of children with utism re often frustrted by their children s lck of empthy but perhps their problem is more fundmentl one, difficulty in self-wreness? FOR ll these resons, it is importnt to work with persons with utism to increse their self-wreness. This will help them develop stronger identity nd memory for themselves, help them mke their own decisions, nd ultimtely, help them better understnd others. 6

9 How to increse person with utism s sense of self? Going bck to Neisser s lyers of self-wreness, we cn see tht n utistic child s self-wreness my be improved upon on severl levels. Arnold Miller, therpist who works with children with utism, suggests severl techniques. FIRST, on the physicl, ecologicl, level it is importnt to increse children s wreness of their own bodies, their sense of propriception. Some techniques include: rough nd tumble ply, tickling, fce touching, elevtion (ctivities on rised pltforms), nd pressure or weight relted ctivities (pushing, pulling, weight-bering). All of these ctivities help children feel' their bodies, nd gin more wreness of wht they re doing', nd how tht ffects the world. Since children with utism my not seek physicl ctivity on their own, it is importnt to expose them to vriety of novel ctivities. The more physicl experiences child encounters, the esier it will be for them to develop generliztion of themselves s doers', nd they cn begin to form sense of self s someone who cn do mny different, specific things. AS children become more wre of their bodies nd wht they cn do, it becomes esier to tech them bout wht other persons re doing. This cn be tught through socil gmes such s hide nd seek, tg, musicl chirs nd jump rope, tht highlight for the child how his ctions relte to others. This will increse the child s wreness of themselves in the context of other persons (the interpersonl self), nd my lso led to stronger emotionl experiences (the privte self) nd more communiction. IN order to increse child s conceptul self-wreness, nd their sense of self-continuity over time, we cn help them by highlighting the trits tht mke them specil. Since persons with utism my not be ble to do so on their own, it is importnt to tech them to express who they re wht they wnt, need, nd feel in whtever wy they cn. Some strtegies include: covering their wlls with pictures of themselves doing vriety of ctivities with vriety of people; writing list of trits, reding nd cting them out; giving them chores you rely on them doing; nd pointing out emotions s they re experienced, till the individul cn express the emotions themselves. High-functioning children my be tught to reflect on their own thoughts emotions by hrnessing their specil interest in fictionl chrcter first teching them to recognize the emotions in the story they red or see, nd then relting those emotions to rel-life experiences s they occur. IT is lso importnt to encourge individuls with utism to mke their choices in how they d like to decorte their environment, wht they d like to wer, nd wht they d like to do. This will enhnce their sense of gency, nd mke them more ttuned to the physicl nd socil consequences of their behviors. With time, children s identities will become stronger, their thoughts nd feelings will be clerer nd more intense, nd they my be ble to better recll the pst nd project into the future. Summry nd Conclusions While erly reserch on utism ssumed tht persons with utism re self-bsorbed nd therefore hve rich sense of self, more recent work is reveling tht persons with utism hve reduced sense of self. In fct, the bility to understnd self nd others co-develops: such tht without rudimentry physicl nd interpersonl sense of self, persons with utism find it difficult to engge with their surroundings. And their difficulty engging in interpersonl exchnges in turn mkes it difficult for them to develop rich sense of self. IMPAIRMENTS in self-understnding in utism cn be mnifest t different levels: from sensory difficulty understnding the boundries of one s physicl body in spce, to more complex bilities to understnd tht certin spects of the self (such s thoughts nd emotions) re privte, nd tht the self is n entity tht continues through time. While typiclly developing persons turn spontneously to self- nd other-reflection when their mind wnders, persons with utism will only do so with explicit instruction nd even then, their thoughts re likely to focus on visul detils, rther thn emotionl nd socil perceptions. This pervsive difficulty from birth hs importnt consequences ffecting person with utism s bility to remember personl events, imgine future ctivity, nd empthize with nother person s emotions. In order to help persons with utism gin better selfunderstnding, we cn begin with simple sensory techniques to enhnce their physicl sense of self, nd grdully dd ctivities tht enhnce their interpersonl nd conceptul sense of self. Ultimtely, these ctivities will serve to strengthen their personl identity, nd empower them to ssert their gency in the world. Rchel Brezis, PhD holds postdoctorl fellowship from the Foundtion for Psychoculturl Reserch t the University of Cliforni, Los Angeles (UCLA). She is currently coordinting the reserch collbortion between UCLA nd Action For Autism (AFA), nd is working with AFA to conduct n evlution of the Prent-Child Trining Progrm, nd study on dults with utism in Indi. 7

10 Token Economy Sudhnshu Grover Very erly in its history, humn kind hd developed the brter system. You hd grins tht I needed to stisfy my hunger. I hd niml skins which you needed to wrp round you to wrd off the elements. I exchnged some of my grin for some of your niml skins. We both got wht we desired. But soon people relised tht brters could be problemtic. I hd lot of skins which no one needed, so I used them up for vrious things. Now I need your grin but hve no skins to give wy. Tht is how neutrl tokens cme into being. The term token suggests something tht is sign or symbol for something else. These tokens were something tht could be brtered for nything. THE erliest use of tokens cn be trced to cly coins tht first ppered in humn history in the shift from nomdic hunter-gther societies to griculturl societies, nd with the progress from simple brter to more complex economies. At different times nd in different climes, this neutrl token took the form of cowrie shells, bits of engrved stone, nd bits of metl, nd pper, which we now know s money. This neutrl item hd no intrinsic vlue of its own; the vlue ws derived from the power of exchnge, the power to ccess things tht one desired. After ll, there is nothing prticulrly motivting bout bits of pper. However, becuse we cn exchnge these bits of pper to buy food, housing, entertinment, etc, these bits of pper we cll money is extremely reinforcing, nd we re willing to do lot of work to obtin them. THIS use of money is wht is lso known s token economy, nd is probbly the token economy system tht is the most well known. However, n re where nother vrition of the token economy system is widely used is in teching children, nd especilly children with developmentl disbilities. How does Token Economy work? Bsed on the principle of providing support for positive behvior, it works in much the sme wy tht money works, except t very simplified level. So the shop ssistnt works hrd the whole month nd knows tht for every dy he works he is ccumulting bits of pper (which is the token clled money) nd every dy he does not work he does not ccumulte ny. Then t the end of the month he collects ll his erned py (ll the bits of pper clled money) which he cn how exchnge for whtever he desires. Likewise kid does the work which we wnt from him, nd in exchnge he erns tokens. When he hs ccumulted predetermined number of tokens he cn then exchnge them for items or ctivities he desires. SO, token economy is system in which n individul erns tokens for doing the work we wnt from him, or in other words for engging in or displying desired behviours or trgeted behviours. Once he hs collected predetermined number of tokens he cn trde them for n item or ctivity tht he desires, which is the bckup reinforcer. Token economies re type of secondry or conditioned reinforcement since, s lredy mentioned, tokens begin s essentilly neutrl, of little significnce in nd of themselves. However, s the tokens become incresingly ssocited with the reinforcers for which they re exchnged, the tokens themselves cn become reinforcing, mking the lerning more motivting. Just like our money! Fig. 1: The bsic chin of Token Economy Child hs no tokens & no ccess to desirble items/ ctivities Child engges in desirble/ trget' behviours Child is given tokens for engging in these behviours Child trdes tokens for bckup reinforcers (desirble items/ ctivities) Wht cn be used s tokens? When we wnt to use token economy in helping children lern, in teching nd/or strengthening behviours, we cn use rnge of items s tokens. However these must be things tht re portble, nd esy to dispense when the trget behviour occurs. Tokens cn be objects such s buttons, printed crds with smiley fces, fke money or mrbles. They cn even be nonobject' such s tick on sheet of pper, hole punched in crd, or picture or design stmped onto crd (Foxx, 1998). TOKENS cn lso be iconic, using imges of the trgeted behvior. For exmple, if child were working on being quiet, one might use token system where he erned pictures of student with his finger on his lips. These tokens re then exchnged for bckup reinforcer. TOKENS could lso be representtive of the bckup reinforcer, for instnce using pictures of wht would be 8

11 delivered fter the occurrence of the trget behvior. Reinforcement puzzles would be n exmple of these nd re cretive wy to implement token economy system. So sy, the child in question enjoys working on the computer, nd tht is his bck up reinforcer, one could use photogrph/picture of the computer. Initilly, the photogrph/picture is cut up into twopiece puzzle. The child lerns tht he hs to ern ech piece of this puzzle individully nd complete the puzzle of the computer in order to receive the fvoured reinforcement, which in this cse is time on the computer. The completed picture of the computer serves s visul cue to the individul of his success. As the child gets more proficient with the use of the token economy, nd is ble to work for longer periods, the number of pieces tht mke up the reinforcement puzzle cn be incresed by simply cutting the photogrph/picture up into more pieces. For token system to work effectively, it should provide cler visul representtion of how much the child hs lredy ccomplished, nd how much more he needs to ccomplish, before he cn get ccess to the reinforcement. One of the wys to do this is by using strip of bord with defined spots on which the child ffixes the tokens tht he erns. The number of discrete spots would be predetermined depending on the number of tokens tht the child needs to ern before he cn exchnge them for the bckup reinforcer. The discrete spots on the token bord provides visul cue tht helps the child predict exctly how much work he needs to do before he gets the reinforcement. IN Fig 2, given below, it hs been determined tht the child hs to ern three smileys which re his tokens. His token bord hs three distinct spots where he hs to ffix the tokens tht he erns. As the child erns ech token, he cn fix it on one of the blnk spots. When he fixes one smiley the token bord shows him tht he hs to still ern two more. When he erns second smiley he plces it on the next blnk spot nd cn see tht he needs to ern one more token. When he plces the third smiley token on the token bord, the child knows tht he cn now get his bckup reinforcer. Fig 2: The Token Bord The token bord t the strt of work The bord fter child erns one token The bord fter child erns two tokens The bord fter child erns three tokens The trget behviour A token economy cn be used to ddress ny trget behviour tht is socilly significnt or meningful for the individul. This could be new skill tht one is trgeting for the child such s when Rocky is lerning the new skill of identifying the colour red. When sked to Touch red, fter being presented with red, blue, yellow colour crds, Rocky could ern token every time he touches the red colour crd independently. A token economy cn lso be used to mintin or strengthen skill/behviour tht the child lredy hs. For instnce, Reen cn thred 10 beds independently. To mintin the behviour of her threding 10 beds, Reen cn be given token for threding ten beds. ADDITIONALLY, to increse the number of beds tht Reen cn thred independently, she cn be given tokens for threding dditionl beds. A trget behviour cn include socil skills, self help skills, cdemic skills, voctionl skills nd so on. THE token economy cn lso be used to encourge positive behviours nd thereby reduce chllenging behviours. For instnce, Shil voclises very loudly in clss nd this disturbs ll his clssmtes. The chllenging behviour in this cse is the loud voclising, nd the trget behviour for Shil would be not voclising. So, if one were to use token economy here, one would first determine Shil s motivtor which would be his bckup reinforcer. His techer would then determine how mny tokens Shil would hve to ern in order to hve ccess to his bck up reinforcer. Hving thus set up the token economy, Shil would then ern tokens t the times t which he is not voclising; or in 9

12 other words he erns tokens when not engging in the chllenging behviour. Delivering tokens when the individul is not engging in the chllenging behviour strengthens the occurrence of the lterntive behviour tht we would wnt to encourge. In Shil s cse the lterntive behviour is tht of his keeping quiet in clss. ONCE trget behviour hs been identified, it is importnt to define the behviour in specific nd observble terms so tht it is cler to both the techer nd the child wht exctly is expected of him. For exmple, the trget behviour for Gyn could be tht in period of ten minutes he will do t lest four out of given five ddition sums correctly. On the other hnd, the trget behviour for Nitin could be tht whenever presented with sop during hnd wsh time, Nitin will be ble to wsh his hnds independently. The Bckup Reinforcer The bckup reinforcer is the item or ctivity tht the individul trdes or exchnges his tokens for; nd this defines the effectiveness of token economy. Therefore it is importnt tht the bckup reinforcers re chosen specificlly, keeping the individul s preferences in mind. A bckup reinforcer cn be n ctivity, item or privilege tht the individul likes nd enjoys. They my be consumbles, toys, gmes, mgzine, pinting ctivities, TV time, free time, listening to music, n outing nd so on. When working with simple token system the individul cn choose from n rry of vilble reinforcers the item or ctivity tht he would like to be working towrds. With more complex token systems one my hve menu of reinforcements posted long with the prices of vrious items for exmple, bubbles might cost five tokens; video cost 16 tokens; trip to McDonld s 50 tokens. Following the steps Whilst using token economy, the first steps would be to decide upon: 1) the trget behviour viz the desirble behviour to be tught or the behviour to be strengthened; 2) the bckup reinforcer viz the ctivity or item s well s the quntity tht will be delivered in exchnge for the tokens; 3) the type of tokens tht will be used. THE next step would be to estblish schedule of reinforcement ie to determine the number of tokens tht would need to be exchnged for ccess to the bckup reinforcer. Initilly the child my hve to ern just one token to get ccess to his bckup reinforcer. This would men tht ech time the child chieves the trget behvior; he erns token which he cn then immeditely exchnge for the bckup reinforcer. Once the individul mkes the connection between the delivery of token nd the consequent erning of the reinforcer nd we see the trget behvior beginning to occur with more regulrity, the number of tokens tht the child needs to ern in order to get his bckup reinforcer cn slowly be incresed. IN this mnner one cn move from sitution of immedite delivery of the bckup reinforcer, to point where the delivery of the bckup reinforcer is progressively delyed, such tht tokens re erned nd exchnged for the desired reinforcement fter n extended period of time. LET S sy tht the behviour tht is being trgeted for Anoop is mking eye contct with the techer for t lest three seconds, nd his bckup reinforcer is tickles from the techer. In the initil stges of implementing the token economy, Anoop would receive one token every single time he mde eye contct for three seconds; or in other words engged in the trget behviour. This token would immeditely be trded for tickles, ie the bckup reinforcer, from the techer. Lter, s Anoop s behviour of looking for three seconds t the techer hppened with greter frequency, he lernt to wit longer nd longer before receiving his bckup reinforcer of tickles. He hd to ccumulte totl of ten tokens before he could get ccess to the bckup reinforcer. ONCE child is comfortble with the dely in reinforcement, one cn design token systems tht my encompss n entire dy or week insted of just one prticulr work session. For exmple, in clssroom, individul students nd often the clss s whole re wrded tokens for being good. When the student or the whole clss ccumultes certin number of tokens, they then receive prize or get to do specil ctivity which is their motivtor. As token systems become complex nd sophisticted, there is often menu of reinforcements tht re posted, long with the prices in tokens, nd specified time plce for exchnging the tokens for bckup reinforcers. IT is vitl to remember to lwys pir verbl prise with the presenttion of the token. Giving Good sitting! or Gret reding! will remind the child why he is getting the token. Also when tokens hve been estblished s secondry reinforcers, they cn in turn help estblish socil prise s reinforcer. When tht hppens it is then esier to fde the tokens over time nd ultimtely the 10

13 person will be nturlly reinforced through the socil interction with the dult. Advntges of Token Economy The use of tokens s mens of delivering reinforcement through the individul exchnging them for bck-up reinforcers hs number of dvntges. 1 Token economies estblish visul routine. Given the fct tht most individuls with utism re visul lerners, they understnd the process of how the token economy works relly well. 2 A token system is gret wy to build n individul s bility to dely grtifiction s they lern to wit for reinforcing items or ctivities for grdully lengthening periods of time. They help the individul understnd tht he cn get to do something relly enjoyble nd fun, nd exctly how much work he hs to do before he gets to do so. Token systems cn help individuls who hve little sense of time become more wre of how long they hve been t tsk nd how much longer they will hve to remin t tht tsk. 3 By delying the reinforcement nd providing vriety of bckup reinforcers, token economies cn ensure tht the individul s desire for the reinforcer remins high nd results in lowering the rte t which the individul becomes stited with prticulr form of reinforcement. Thereby the item or ctivity continues to hve vlue s reinforcement. 4 Whilst working with student if one hs to deliver the reinforcement fter every response, then even reltively brief reinforcement cn gretly interrupt the interction nd slow down the rte of instruction. Reinforcing response with token is quick, nd llows for speedy, interruption-free instruction, thereby ensuring tht the student s ttention is mintined. When the reinforcement is delivered fter severl responses insted of fter ech response, items or ctivities tht re longer-lsting cn be chosen for reinforcement. As n exmple, where video is bckup reinforcer, it is probbly not effective to use it s the reinforcer when it hs to be delivered for ech correct response. Even few seconds of video fter ech response cn slow down the rte of interction nd possibly result in the loss of ttention. However, if the video is especilly rewrding for child, he my be willing to work for nd ern severl tokens in order to get chnce to wtch it. 5 In most school settings, it is not common to see techers wlking round hnding out crzy blls or blowing bubbles fter every correct nswer. Using tokens cn be less obtrusive in the clssroom. They lso provide the sme reinforcement for individuls who hve unique preferences in bck-up reinforcers. So in clssroom, irrespective of wht ech child likes, ech child essentilly gets the sme token. Therefore tokens re esy for the techer to dispense nd esy for children to ccumulte. For this reson token economy is prticulrly successful in inclusive clssrooms. 6 Token systems re very good opportunity to introduce some rel-world mth skills to the child. Asking questions like, How mny stickers do you hve? How mny more do you need to get the bubbles? Does Sunny hve more stickers thn you? How mny more? cn get children thinking bout numbers in new setting. 7 Finlly, use of token economies cn lso help to develop n individul s plnning skills s different quntities of tokens need to be erned for different types of bckup reinforcers, nd further the tokens must be grdully ccumulted until enough hve been erned. Disdvntges of Token Economy As with ny system, token economies too hve some disdvntges: 1 Techers hve to be vigilnt in piring socil prise with tokens. As with ny tngible reinforcement, it is importnt to wen the individul off the tokens nd therefore it is bsolutely necessry to pir socil prise with the tokens so tht the socil prise in itself cn work s the reinforcement t lter stge. 2 When token economy is used for lrge number of students or n entire clss, it requires some extr effort in orgnising nd conducting the progrm, 3 When used inppropritely nd without understnding the principles behind it, token economies cn end up being counterproductive. IN conclusion, it is importnt to note tht token economy is not specil eduction. Tokens in the form of stickers nd strs hve lwys been used in regulr clssrooms. In fct, they work in the rel world with dults s well. Most dults prticipte in some form of token economy, whether it be crd point system of deprtment store like Shoppers Stop or the frequent flyer miles by Jet Airwys. IF used ppropritely, with cler understnding of the principles guiding it, token economy cn be very effective system of helping children lern. Token economy systems build confidence, ptience, nd demonstrte the mening of the phrse, Good things come to those who wit. 11